ONTARIO ASSOCIATION OF RESIDENTS' COUNCILS
CONCERNED FRIENDS OF ONTARIO CITIZENS IN CARE FACILITIES
CONSUMER COALITION ON LONG-TERM CARE
RIDEAU REGIONAL CENTRE ASSOCIATION
CANADIAN UNION OF PUBLIC EMPLOYEES, OTTAWA-CARLETON DISTRICT COUNCIL
ONTARIO PSYCHOLOGICAL ASSOCIATION, EASTERN REGION
CONTENTS
Tuesday 23 February 1993
Long Term Care Statute Law Amendment Act, 1993, Bill 101
Ontario Association of Residents' Councils
Peter Kehoe, president
Mary Ellen Glover, executive director
Concerned Friends of Ontario Citizens in Care Facilities
Freda Hannah, president
Consumer Coalition on Long-Term Care
Patti Bregman, counsel
Sam Savona, coordinator
Sandy Spring
Rideau Regional Centre Association
Molly Morris, executive member
Eleanor Bradley, secretary
Glebe Centre Inc
Colleen Henderson, president and chair, board of directors
Madeleine Honeyman, director
Doug McKeen, director
Rev George Strong
David Foulkes, vice-chair, board of directors
Canadian Union of Public Employees, Ottawa-Carleton District Council
Betty Sommers, president, CUPE Local 870
Mary Catherine McCarthy, president
Ontario Psychological Association, Eastern RegionS-1148
Dr Irwin Pencer, representative
Lesley Cluff
STANDING COMMITTEE ON SOCIAL DEVELOPMENT
*Chair / Président: Beer, Charles (York North/-Nord L)
Vice-Chair / Vice-Président: Daigeler, Hans (Nepean L)
Drainville, Dennis (Victoria-Haliburton ND)
*Fawcett, Joan M. (Northumberland L)
Martin, Tony (Sault Ste Marie ND)
Mathyssen, Irene (Middlesex ND)
*O'Neill, Yvonne (Ottawa-Rideau L)
*Owens, Stephen (Scarborough Centre ND)
*White, Drummond (Durham Centre ND)
Wilson, Gary (Kingston and The Islands/Kingston et Les Îles ND)
Wilson, Jim (Simcoe West/-Ouest PC)
Witmer, Elizabeth (Waterloo North/-Nord PC)
*In attendance / présents
Substitutions present / Membres remplaçants présents:
Bisson, Gilles (Cochrane South/-Sud ND) for Mr Drainville
Caplan, Elinor (Oriole L) for Mr Daigeler
Carter, Jenny (Peterborough ND) for Mrs Mathyssen
Hope, Randy R. (Chatham-Kent ND) for Mr Martin
Jackson, Cameron (Burlington South/-Sud PC) for Mr Jim Wilson
Jamison, Norm (Norfolk ND) for Mr Drainville
Marland, Margaret (Mississauga South/-Sud PC) for Mrs Witmer
Rizzo, Tony (Oakwood ND) for Mr Owens
Wessenger, Paul (Simcoe Centre ND) for Mr Gary Wilson
Also taking part / Autres participants et participantes:
Quirt, Geoffrey, acting executive director, joint long term care division, Ministry of Health and Ministry of Community and Social Services
Wessenger, Paul, parliamentary assistant to the Minister of Health
Clerk / Greffier: Arnott, Douglas
Staff / Personnel:
Gardner, Dr Bob, assistant director, Legislative Research Service
Drummond, Alison, research officer, Legislative Research Service
The committee met at 1014 in committee room 2.
LONG TERM CARE STATUTE LAW AMENDMENT ACT, 1993 / LOI DE 1993 MODIFIANT DES LOIS EN CE QUI CONCERNE LES SOINS DE LONGUE DURÉE
Consideration of Bill 101, An Act to amend certain Acts concerning Long Term Care / Loi modifiant certaines lois en ce qui concerne les soins de longue durée.
The Chair (Mr Charles Beer): I call this meeting of the standing committee on social development to order. Just before we begin with our hearings, I note for members of the committee that legislative research has just put together some articles from the weekend papers on the question of long-term care for our information. Some of you may have seen them, but as often happens, one misses them.
ONTARIO ASSOCIATION OF RESIDENTS' COUNCILS
The Chair: We've had several cancellations this morning for a variety of reasons, but I thought as the Ontario Association of Residents' Councils, which was to begin at 10:30, is none the less here, it would be useful if we got started. That way, we can even give them a little more time, which I think would be useful for all of us.
With that, could I call upon the representatives from the Ontario Association of Residents' Councils to come forward. We're delighted you could fight through the snow and whatever else lay out on the roads to get here and be with us this morning. Help yourself to some Toronto water, if that appeals. Please have a seat.
Mr Peter Kehoe: My remarks will be very brief, and I feel quite at ease standing.
The Chair: Our problem is for electronic Hansard. I'm afraid it's one of those encumbrances of modern time. Would you also be good enough just to introduce yourself again for Hansard and for the members.
Mr Kehoe: I will. Good morning, ladies and gentlemen, honourable members. On behalf of the Ontario Association of Residents' Councils, it's my pleasure to be here. I'd like to introduce myself. My name is Peter Kehoe. I'm the president of the association and I'm a resident of Rotary Laughlen Centre, which is a long-term care facility. It's a charitable care facility in downtown Toronto. To accompany me this morning we have our executive director, Mary Ellen Glover, and our research director, Miss Pat Prentice, both of whom are paid employees.
The Chair: Would you like them to be at the table with you?
Mr Kehoe: They will in due course. Mary Ellen Glover will present the brief on behalf of the association.
Also accompanying me this morning are four members of our executive. They will be available to answer questions as they may arise after the brief has been presented. We've a fifth member of the executive, a woman who is physically disabled, who is unable to be present this morning. She's a person we would be proud to have with us. She's a very competent individual, but she has difficulty getting around. She represents the women in our constituency, who are a significant number of the residents in long-term care facilities.
By way of introduction, I would say that the Ontario Association of Residents' Councils is made up of councils in long-term care facilities and speaks on behalf of the residents in these homes. Our function is to interpret for the residents the views put forth by the management of the facilities, the information that's given to us by the government through the various departments and also to interpret back to the management of the facilities and to the government the views of the members we represent.
With respect to long-term care, we feel we speak on behalf of about 25,000 people who are presently living in these facilities. We also speak on behalf of their dependants and next of kin and those in the community who may one day be in long-term care facilities or who may wish to consider that as an alternative way of life as they advance in years. So our constituency is a large one.
In general, our reaction to the proposed changes in long-term care are positive. We can quibble over details and there are many things about the proposed changes that we would like to alter, but on balance, we feel pleased to see some action being taken. We would like to feel whatever changes are being made will be made on a trial basis and they will be subject to revision based on experiences that may develop over the years.
There are two or three points I'd like to make just before I turn the meeting over to Mary Ellen Glover, our executive director. The first point is, we are concerned about access to facilities. We recognize that long-term care is an expensive, limited resource that has to be available to the community on a need basis. We would like to feel the need of the individuals concerned is recognized in a holistic way and also, apart from taking account of their physical and mental capacity, recognizes their personal preference with respect to ethnic, cultural and religious background. That involves of course an appeal process and the like.
Once they're in the facility, we are concerned about the quality of life and the quality of care. We feel these are very important elements and we feel they need to be monitored because of the substantial amounts of money involved in providing this care. For that reason, we feel some kind of inspection process is warranted.
We're also concerned about the financing of the whole operation. We recognize that finances are a vital and important part of the continuing supports in the community. Apart from being supported by the taxpayers at large, those who are enjoying the benefit must be able to contribute as far as their means permit. We also feel that those who are able to pay more than the minimum should be expected to do so if they want preferred accommodation.
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We are concerned with the long-term financial stability of the institutions in which we live, be they charitable organizations, such as the one in which I live, or others. We feel they must have some secure, dependable source of income that's going to give the residents assurance of their continued efficient, effective operation. Those are my general comments.
Our executive director has prepared a brief and we feel quite confident that she's able to present it to you on our behalf. Following her presentation, if there are any questions you wish to direct to either Mary Ellen Glover, the executive director, myself or the other directors who are here this morning, we will be pleased to do what we can to answer your inquiries. Thank you for your time and attention.
The Chair: Thank you. Perhaps you would care to remain there, because after the presentation we'll move to questions. Ms Glover, welcome to the committee. Please go ahead.
Ms Mary Ellen Glover: Thank you for providing us with this opportunity. As Mr Kehoe has noted, our association is governed by a board of directors elected from and by residents in our member facilities. Pat Prentice and I are the only two people associated with the organization who are not residents in long-term care facilities.
We provide our services to both members and non-members, and when we are faced with an issue such as long-term care reform, we solicit information and opinions in the following manner: We solicit them through questionnaires such as that in our report, Long Term Care Reform: The Resident Perspective; we solicit them through regional conferences, through meetings of our board and executive at which items of concern to residents are discussed and policy set, and through personal visits to individual homes and groups of homes.
We also work in cooperation with other organizations concerned with residents and their welfare, be they other consumer organizations or care providers, to ensure that the rights and dignity of residents are protected.
We have participated fully in discussions on long-term care reform from the original initiatives developed by the previous government through to participating on the working group which worked to develop the standards of care that will come into effect with this legislation. We are pleased to see that some of our recommendations have been accepted, however we still have some serious concerns about the reform process and its consequences. Therefore, we wish to comment briefly on the following aspects of the reform.
First of all, we'd like to talk a little bit about residents councils and their right to exist. Currently, the only piece of legislation that recognizes the right of residents to form a residents' council is the Nursing Homes Act. It requires that administrators of nursing homes inform residents of their right to form a council and specify some limited powers. No such requirement exists for homes for the aged, whether they be municipal or charitable.
While the requirement to inform under the Nursing Homes Act has not resulted in all nursing homes having an effective residents' council, it has increased the awareness of the need to have residents' councils. Where homes have taken the responsibility of forming a residents' council and providing it with appropriate support mechanisms, these councils have proved to be an effective liaison between the resident population and the management of the home.
We are disappointed that Bill 101 does not recognize residents' councils and the need for them in all forms of long-term care facilities. We feel this is perhaps a step backwards for a province which under all governments over the past 15 years has recognized the need for a vehicle in long-term care facilities that will lead to resident empowerment. In fact, the province of Ontario has shown itself to be so forward-thinking that it is the only Canadian province which has recognized the need for an association such as OARC and provided it with financial support.
During the consultation process, many organizations other than OARC supported the idea of greater recognition of residents' councils. Even Dr Ernie Lightman in his report on rest and retirement homes recommends the establishment of residents' councils.
We would therefore recommend that some consideration be given to formal recognition of residents' councils in legislation. As well, we would recommend that standards or regulations outline mechanisms that should be put into place within homes to support the council and its activities.
We also have a serious concern about the placement coordinator aspect of the legislation, the powers of the placement coordinator and the appeals process. In our original brief, we dealt with the concept of a service access coordinator and we were certainly in favour of such an agency as a central information agency. However, we did have some grave concerns about the ability of such an agency to take into account the wishes of the individual.
These concerns have increased after looking at the powers given to the placement coordinator in Bill 101. We are extremely concerned that this placement coordinator will literally be given the power to control the individual's life. Not only will the placement coordinator decide who is eligible for admittance to a long-term care facility, but he will also decide who will be admitted to what facility. What guarantee do we have that this power and authority will not be abused? It would appear there is indeed no guarantee.
In our original brief, we pointed out that there are seniors who do wish to live in a communal facility, to be with peers, to have the opportunity to socialize and to feel safe and secure. Will the placement coordinator recognize these as valid reasons for admission to a facility?
Again, not only have our members told us that they wish to live in a communal facility, but they have told us that for the most part, they very carefully selected a specific facility. They didn't just enter the one which was closest to where they lived or take the first bed that came along. What regard will be given to the individual's wishes to live with others of the same religion or ethnic background or indeed to live in an all-female residence?
Currently, we often face the situation where a hospital discharge planner almost threatens the senior or family members by strongly implying that a senior who must go from hospital into long-term care must take the first bed available or they will be put out on the street. Will the placement coordinator alleviate or aggravate situations like this?
Our concerns about the powers of the placement coordinator arise partly from what we see as the result of Dr Ernie Lightman's report, A Community of Interests. Dr Lightman made recommendations which he felt would help people. While I'm certain he was well-intentioned, his report reflects his opinion and the recommendations are his. It does not reflect the consensus of a group, and in reality it ignores the needs of a good portion of the senior population who live in retirement homes. He has actually put forward recommendations which could harm rather than help these people. Will the same thing happen with the placement coordinator? Will it be "Do this because I think it is best for you" rather than "What do you want to do?"
Not only would it appear that the placement coordinator -- he, she or they -- has the power to literally play God, to decide what quality of life the individual will or will not enjoy, but it would appear that there is no realistic avenue of recourse open to the individual. Yes, there is an appeal process. If the individual does not like the decision of the placement coordinator, he, she or their representative can go to the appeal board. If they don't like the decision of the appeal board, it's on to Divisional Court.
How realistic is it to believe that your average frail 85-year-old widow will be able to follow such a process through on her own? Is it even realistic to think that your average family member could follow the process through without some assistance from an advocate or even a lawyer? Where will this assistance come from? Yes, the advocacy legislation has been passed. There will be an advocate to help the consumer, but what will happen in the period of time between the implementation of this legislation and a full-fledged advocacy system being in place and working?
The legislation specifies that one member of an appeal board may be a physician. That's fine, but who will be the other members? What about provisions for a consumer representative or an advocate?
Many of our members have come to us with concerns about the proposed copayment. The government has told us that copayments for people who currently occupy extended care beds will be increased under reform. First we were told it would rise to about $35 per day. Then the rumour was $37 a day. Now we hear that it will be $38 a day. Now, ladies and gentlemen, tell me what would you say if your mortgage holder or your landlord told you that your monthly payment was going to increase by approximately $360 per month. It would be an awful blow, wouldn't it? Perhaps Dr Lightman's comment made to the conference on long-term care sponsored by the Institute for Law and Medicine that even nursing homes should be covered under rent control was not so off the wall after all. At least residents would have some protection.
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It would appear that long-term care reform is being paid for by residents. It would also appear that residents have, at this time, no guarantee that they will be getting a bigger bang for their buck. We are still not certain if they will be getting more service, higher quality service or if in effect they are only being charged an increased user fee which will simply go to finance the system in place. On a very basic level, this just isn't fair.
We also have grave concerns about the ability of the current resident population to pay this increased fee. While we applaud the fact that subsidies will be provided to residents who cannot pay the full copayment and that testing will be based only on income and will not include assets, we wonder if the government has a realistic idea of the disposable income available to the resident population.
Several years ago, we did a survey of our membership to determine what residents who depended on the comfort allowance bought with their very limited disposable income. As a side effect of this survey, we also discovered there were many residents who did not depend on the comfort allowance but still had only very limited incomes. They came from a time when private pensions were limited or non-existent. Many women never worked but married and depended upon their husbands. When their husbands died, their pensions died with them or were reduced drastically. We wonder if this increase in copayment will result in the revenue projected or will it simply mean that more people are subsidized to a greater extent.
Putting aside the financial implications of the increased copayment, what will it mean in human terms? The human side of it is that an unknown number of residents will be forced to move, perhaps not change facilities, but move from preferred accommodation to less desirable accommodation. Has the government considered the situation of the 67-year-old nurse from Whitby who has a 90-year-old mother? Mother has been in the nursing home for five years and daughter is subsidizing her. Daughter is paying the preferred accommodation charge for a private room. This room has been mother's home for five years, but now mother must move because daughter cannot pay the increased copayment and the preferred accommodation charge. This is a true story. This is not what if, this is a real question that was asked to our office.
I guess the other side of this question is the facility's side. What happens when people come and request a change in accommodation from perhaps preferred to ward? How does the facility juggle accommodation? Where do they find the cheaper accommodation and what do they do with possibly empty beds?
Lastly, we have some very minor concerns about the powers of inspection that were listed in Bill 101. Over the years, we have received a small but steady stream of complaints from residents' councils about the inspection process that was in place in the past in nursing homes. These complaints range from complaints about how individuals are treated by inspectors to complaints about how the group residents' council is treated.
There are two aspects of this legislation as it applies to the rights of inspectors that concern us:
First, it specifies that inspectors have the right to question a person on matters relevant to the inspection. But, we ask, what about the right of the individual resident to refuse to be questioned? Many residents find the inspection process intimidating. They feel they are being inspected and judged.
Again, the legislation specifies that the inspector "may demand the production for inspection of records or other things relevant to the inspection." We have encountered instances of the inspector demanding access to residents' councils' records, and when being given access, telling the council that its records are not appropriate or kept to the satisfaction of the inspector. It must be made very clear that it is not the council's records that are being inspected. What should be checked is the home's response to council requests. Council records should be the property of the council and it should be clear that the council has the right to decide who sees those records.
In conclusion, we would like to comment briefly on the consultation process. The government has provided many opportunities for consultation. They have asked consumers what they want changed and how the system should work. They have asked consumers to sit on committees. Consumers are doing this, often giving a great deal of their own time and often at their own expense.
It was very difficult for all of us to get here today. One of our members had to come from Ottawa and one of them had to come from Kingston. The weather was certainly not very good yesterday, but we made it.
The government is getting a lot of free consultants, but often these consultants are coming away with the feeling that this whole process was just a sham, that we are giving but not getting, that the decisions have already been made and that all this is simply window dressing.
On behalf of our association, thank you very much for this opportunity.
The Chair: Thank you very much for coming in and for your detailed brief. We appreciate that. We have had a number of individuals who have been before the committee, sometimes with other groups, who have spoken on behalf of residents, but this is the first time we've had the council. It's an area that has been of interest to members of the committee, so we're delighted to have you with us this morning. We'll begin the questioning with Ms Marland.
Mrs Margaret Marland (Mississauga South): Good morning, Ms Glover. I would like to congratulate you on making the effort to make a presentation to this committee. I was sitting here thinking that I hope Mr Jamison isn't intimidated, because I've been in the Legislature eight years and it's the first time I've sat on a committee with five women and one man.
Mr Norm Jamison (Norfolk): That's exactly the number of women who are in my house.
Mrs Marland: So you feel comfortable.
The Chair: There are a few of us guys up here too, you know.
Interjection: They don't count.
Mrs Marland: It's a coincidence that there are so many women sitting on this committee this morning. The reason I mention that is that in my experience of 20 years in politics, I think these kinds of issues are very often ones that for some reason we end up being closer to. I think it comes from the fact that, if we look after family members in our homes before we become involved with different forms of long-term care, it has been traditional that the women have been the care givers in most cases. I think it's great that the representation on this committee this morning, when you're here, is as it is.
I want to say that I have some experience with a residents' council at the Mississauga Hospital, which is currently chaired by Kathy Harvey, who is a constituent. Her family have been constituents of mine. When I went to the public meetings that residents' council held to look at the discussion paper of the ministry, I heard a lot of the concerns you've addressed this morning. I think Kathy Harvey herself is an example. I think she's maybe 46 or 47 now, and she's a multiple sclerosis patient who has had to live in the hospital since she was 34.
When I look at the category of patients who are from that particular residents' council, I realize we're looking at a whole range of needs when we deal with the subject of long-term care. It concerns me that long-term care in this particular Bill 101 never addresses chronic care. I can't ever begin to understand why the Ministry of Health thinks it could separate the two between long-term care and chronic care.
Also, I hear very clearly the concerns you're expressing about has it all been window dressing and is it a sham, because the only way we'll know that is if the bill goes through exactly as it is now. If there are no substantial amendments from the government to this legislation to address the concerns that have been brought before this committee through a number of weeks of public hearings, then we'll know it has all been window dressing and it is a sham. The government intends to pass its legislation the way it's drafted and we might as well forget about the public input process. I felt the public input process was ignored even with the drafting of the bill, after the response to the discussion paper.
You said, "Of course there will be advocates," and then you went on to talk about an Advocacy Commission. Because I don't have a copy of your brief in front of me, I'm trying to paraphrase what you said. If there's going to be an Advocacy Commission, do you have the sense that there's going to be a safety net out there? People's expectations will be that each and every one of them will have access to an advocate for their personal needs, and when the reality hits that there won't be an advocate for each and every person in need -- do you have a concern for people whom your residents' councils represent, that the whole area of advocacy isn't going to help in their long-term care?
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Ms Glover: Yes. I do have a concern that the proposed advocacy system really won't help residents in long-term care facilities all that much. One of the things our association preaches when we go out to help a home set up a residents' council is cooperation, not confrontation. It's working together. Where you can get cooperation between the administration of the home and the residents' council, the council can do great things.
I have a bit of a concern that if things aren't worked properly with an advocacy system, it will be setting up a confrontational situation rather than a cooperative situation. That's the concern I have with that placement coordinator thing and the whole appeal process. You've got this person there who looks like he or she or it or they are going to play God: "You can go." "You can't go." "You can go in here." "You can't go in there." Then the person can appeal to an appeal panel, but we don't know much about that appeal panel, and that's a difficult process to go through. It would be difficult for me to go through it on behalf of somebody without some assistance.
If you're rejected by the appeal panel, then you get to go to Divisional Court. It seems to me to be just a little too much to expect people to take advantage of it without a great deal of assistance. I can give you examples of things that have happened, a couple of cases where residents in retirement homes have appealed against an increase in their monthly rate. They've had to have a great deal of legal assistance to be able to use the process effectively.
Mrs Marland: When you talk about the power of this placement coordinator, I should tell you that you're certainly reiterating a lot of comments that we have been hearing. If there's one pivotal point of concern, that's the one we've heard the most. I'm not sitting on this committee regularly, but the days that I have been here, there has been a lot of concern about that.
In fact, yesterday in Sudbury, it was rather interesting to hear that one of the questions was there should be two ways of appealing the decision of that placement coordinator, one for the client to be able to appeal, but also for the facility to be able to appeal in terms of, "In my facility, I can't accept this person because I can't give them the adequate care or the type of care," or whatever the needs are that are being met.
The other point that was made yesterday in Sudbury too was that perhaps there should be a guaranteed expediency dealing with that appeal, because you simply can't say 30 days. Thirty days from now may be too long for everybody who's involved in placing that individual. I wonder if you'd like to comment on the two-way appeal and the length of time it would take.
Ms Glover: I think it would be fair to say that our association would also feel that it's not only the protected resident who has the right to appeal, it is the home that has the right to appeal against taking an inappropriate placement.
One of the things we hear most often when we go around the province and talk to residents in individual homes is the difficulty that presents to fairly well residents who are alert and active, like the gentlemen who are with us today, when they're constantly faced with the situation of having to deal on a daily basis, 24 hours a day, with people who are cognitively impaired perhaps or who are disruptive, I guess. It's very wearing on residents. So certainly the home should have the right to appeal, and if it's going to be any kind of a decent appeal process, it should be quick. I guess maybe that's another concern about this Divisional Court thing.
The Chair: If I can move on then. Ms Carter.
Ms Jenny Carter (Peterborough): Thank you for your presentation. There's one question I would like to ask you straight away. Do you think it would be a good idea if the act stated that residents' councils were to be compulsory in all facilities?
Ms Glover: I guess that would be a wonderful idea, but making residents' councils compulsory does not necessarily make residents' councils good. There has to be something in there that will assist in making residents' councils effective.
I'll give you a perfect example. This particularly applies to chronic care hospitals. They decide they're going to go for accreditation. The first thing they do is phone us up and say, "We want to become a member." This is so they'll get a membership certificate they can hang on the wall saying they're a member of the Ontario Association of Residents' Councils. This is so that when the accreditation people come in, they can say: "We have a residents' council. Look here, we're a member of that organization."
Ms Carter: The point is that it's obviously something that is very good to have, and I think we would all agree with that, but you really can't force it. It has to be spontaneous to be genuine.
Ms Glover: I think there should be something in there that encourages the home very strongly to develop and support an effective residents' council. When a nursing home looks at the act and takes that situation where they have to inform, they can do one thing or another. They can say, "Guys, you need to have a residents' council" or "You can have a residents' council," or they can sit down and put into the home some systems whereby the council will work.
We produced a video last year with the assistance of the Ministry of Community and Social Services and one of the councils that is in this video is a council in a nursing home. All the members of the executive are over 90. The vice-president is 96. They're all in wheelchairs. They have monthly meetings. They get maybe 50 to 60 people at each meeting. But the home makes sure that the aides take the people down to the meetings. The home has provided the council with a volunteer who acts as their hands and their feet. The council makes the decision; the volunteer goes out and implements the decision. This is the kind of support that would be effective.
Ms Carter: I am looking at this whole question of how we're going to ensure that there is a high quality of care in institutions. You mentioned that the Advocacy Act might not do a great deal, but it seems to me there is an interplay here that where you have a flourishing residents' council, maybe there wouldn't be much need for advocacy. But maybe in a home where, for whatever reason, a residents' council was not functioning well or was not in existence, then that provides another fallback for individuals whereby they can get problems remedied. Of course, if enough people in a given institution did that, then the systemic side of advocacy would come into play, where a problem that affects a lot of people can be looked at and remedied.
Then, of course, there's the question of inspection, which you did mention. That has been raised before this committee quite frequently, that people don't like the idea of having these people coming in and looking. I'm just wondering what is the best sort of interaction between these three possibilities.
Ms Glover: Between inspection, advocacy and residents' councils?
Ms Carter: Yes. We need something in place there to safeguard residents.
Ms Glover: I don't think you can deny that there is some kind of an inspection process needed, but I think the idea that has been put forward over the last several years of compliance and cooperation between the governing agency, which is the government, and the administration of the home is the way it should go. Inspectors don't do bad things, but sometimes they can be rather insensitive to the needs of the residents. Sometimes they can say that the home has to do things that maybe the residents don't really want it to do.
I had a situation where the council phoned one time and they were all up in arms because the inspector said they could have apple pie only once every six weeks. They had been used to having it for dinner on Sunday.
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Ms Carter: The residents' input is very important to keep this on a commonsense basis.
Ms Glover: Yes.
Ms Carter: The other point I would like to raise is this whole question of the coordinators, because again, we've heard a lot about this and about how powerful these people might turn out to be and so on. Although that is not clarified in the act -- I'm inclined to think it should be -- the intention certainly is. I think if you look at the regulations and so on, you will see this. The coordinator would not act like that. He would put the consumer's choice very much at the top of the agenda as far as where that person would go. Things like ethnic differences, religious differences and so on would be respected and people, wherever possible, would go somewhere that was at the top of their list and was appropriate. So that certainly is the intention, although as I say, it doesn't seem to be very clear in the act.
Ms Glover: I suppose one of the reasons we have concern about this is that over the summer when we participated in the development of the standards that will be used, not only was our association concerned, as Mr Kehoe put it, that people be eligible for holistic reasons as opposed to, "You're old and you're physically sick so therefore you can get in" -- because there are people who choose to live with their peers in some form of communal setting. I'm not saying everybody does, but there are people who need to be considered. So we'd be looking at the standards and everybody on the committee would agree on certain wording. Off it would go to wherever it went and it would come back and the wording would not have been altered to reflect the concerns registered by the committee. This is why we're concerned.
Ms Carter: This is a universal concern.
The Chair: I'm afraid we're going to have to move on. Ms Fawcett.
Mrs Joan M. Fawcett (Northumberland): I too want to thank you for making the effort to come, because I think this is one group that we really need to hear from. Certainly, what you have said so far echoes what other people have been saying, but you've even gone a little bit further on a few things and I can certainly agree with you.
I have a 94-year-old aunt who is in a retirement home right now. Getting into the idea of the residents' councils, they boasted of having one, but absolutely it just died. It was more or less as you termed it, window dressing, because it seemed that any of the concerns of the residents just got lost and did not go forward. Certainly, one of the things she wants to know whenever she sees me is what's happening about these kinds of things and what we're doing.
When thinking of an amendment, I certainly liked your words "develop and support an active residents' council." I think that goes a long way. I don't know whether you have put your mind to an amendment that possibly would work in this legislation, because we fear, with so much that is going to be left to regulations, maybe we won't have a chance for the input. So we'd like to see some of these things that are concerning people in the legislation. Have you put your mind to a proper amendment that would say what you want it to say?
Ms Glover: No, we haven't, but we're having an executive committee meeting this afternoon and we could certainly put that on our agenda for other business.
Mrs Fawcett: You might just want to consider that, and certainly we'd be interested to know just what you would come up with.
We too wonder about the copayment system, because as most facilities have expressed to us, we don't know what the formula is going to be and we keep hearing rumours. Now we're told that hopefully we'll know at the end of March, and that's coming soon. It's put a lot of facilities on tenterhooks, because they don't know just what it is they're going to be doing. So we certainly appreciate you coming in. I have other questions, but I know my colleague would like to ask just a short question as well, if that's okay.
The Chair: Okay, a very short question.
Mrs Yvonne O'Neill (Ottawa-Rideau): It's more of a comment. I'm very pleased that you told us the specifics of your problems with the consultation process, because we feel the same way; that although this document is touted as having the highest level of consultation ever, the consultation took place previous to the legislation, and many are telling us that they don't see the results of that consultation here.
Everywhere we've gone, the residents' councils have been more than helpful, you'll be happy to know, and we have found many presentations that were joint residents' councils and administrators, and as you say, the cooperative model certainly is one we all aim for. So I think you can keep up the good work. I'm glad you're going to put us on the agenda of your meeting this afternoon.
The Chair: The parliamentary assistant has a couple of points in response to your brief, and if, in return, you wish to ask any questions of him or of staff on those, please feel free to do so.
Mr Paul Wessenger (Simcoe Centre): Thank you very much for your brief. I just thought I'd clear up a few items and then ask staff, also, to clarify a few more. First of all, with respect to concern about the legislation, there is likely to be a second phase of legislation with respect to the community aspect of long-term care, so hopefully if there are any corrections that need to be made, we'll have the opportunity to do that at that stage as well.
Mrs Marland: Would you explain, Mr Wessenger?
Mr Wessenger: We have a policy statement coming out in the month of March with respect to long-term care.
Mrs Elinor Caplan (Oriole): Don't hold your breath.
Mr Wessenger: Likely, there will have to be legislation prepared to integrate based on the policy statement. For instance, one example of course is the role of the placement coordinator, which will relate to community care as well as institutional care.
Mrs Marland: I have a point of order, Mr Chairman.
The Chair: Point of order.
Mrs Marland: My point of order is this: The parliamentary assistant said there would be a second phase of legislation, and I asked him to explain it because I didn't want anybody in this room to not be able to understand that; I certainly didn't. Now in explaining it, he backs down and says, "Well, there will be a policy statement, and there probably will have to be legislation to enforce the policy statement." I think, in fairness, on a point of order, the parliamentary assistant, speaking on behalf of the minister, should say one thing or another.
The Chair: If I might preface, the parliamentary assistant is speaking to the points. I understand your comment, and the parliamentary assistant's comments will have to be taken as they are given.
Mr Wessenger: The second point I'd like to deal with is with respect to the question of residents' councils in all long-term care facilities. I certainly agree with you that all of the long-term care facilities ought to have residents' councils, and certainly I'll be recommending that legislation be amended with respect to all the long-term care facilities to ensure that this occurs.
Also, with respect to what Mrs Fawcett raised, we certainly would appreciate your recommendations as to how we could make residents' councils more effective, and I'm pleased to hear it's going to be on your agenda so that you can respond to that aspect.
With respect to your concerns about the lack of a holistic approach concerning the admission criteria, I assume that was based on the first manual draft, which did, I understand, relate basically to personal and nursing care requirements. There is a subsequent, second draft. I don't know whether it's out yet, but if it isn't, it will be out very shortly. I hope you'll review it, and I'm assured it will take account of social factors as well as just the personal care factors.
On the question of placement coordination, I think I'll ask ministry staff to explain again, because there has been a fair amount of misunderstanding with respect to that. I can assure you the intention is to ensure consumer choice, and I can also assure you we are looking at ways to make that clearer in the legislation.
Mr Geoff Quirt: I'm Geoff Quirt, acting executive director of the long-term care division. As Mr Wessenger said, the proposed placement coordinator's job would first of all be to determine whether a prospective resident was eligible for admission to a long-term care facility and to allow consumers, the prospective resident or his or her family, in that context to make an informed choice with respect to the community service options they may not have been aware of and also an informed choice about which long-term care facility they would choose to go to. Many prospective residents currently would not know what resources were available in their communities, so the placement coordinator's job is to make sure they understand that and to make sure that they get fair access to the facility of their choice.
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In other words, once the prospective residents indicate which facility they wish to go to, then their access to that facility should be based on whether they need to go to that facility more than someone else who has expressed a preference for the same facility. So the notion of client choice is of paramount interest to us in that context, and as Mr Wessenger said, we suspect that amendments to that effect would be coming forward for the bill.
The second point I'd clarify is with respect to legislation. As you're well aware, the bill before the committee, Bill 101, amends a number of pieces of legislation: the Nursing Homes Act, the Homes for the Aged and Rest Homes Act and the Charitable Institutions Act. It's our hope to proceed with a more comprehensive piece of legislation that would replace those bills. This bill before you simply amends them, and the consistent standards that are being put into each of those three bills would form the basis of a larger reform replacing those bills and also providing, in that second piece of long-term care legislation, the legislative framework necessary to implement community service reforms as well. An example would be the creation of multiservice agencies.
So we do intend to proceed with the second phase of legislation to consolidate existing bills or legislation that relate to long-term care facilities, and also, in that second phase of legislation, to provide the framework for community service improvements as well.
The Chair: Any comments, questions or thoughts that you want to make on that at this point?
Mr Kehoe: I would like to volunteer a couple of remarks before we conclude. With respect to the question regarding the Advocacy Act that was raised by a member, we rightly or wrongly look on the Advocacy Act as a means of ensuring the rights of individuals as it's providing a safeguard for the individuals. We feel the residents' council function should be to look after the group and to avoid getting entangled with individual problems. We sometimes flip from what we think is our mandate, but if we're doing what we think we should be doing, we're concerned with the overall welfare of the residents in a particular facility and we try not to deal with individuals per se. We'd rather like to feel that we're dealing with policy matters that affect everybody.
With respect to the residents' councils, we feel quite strongly that a facility is better if it has a well-run residents' council, but it's a very difficult thing to legislate because unless the management of the facility is convinced that the time is worth the effort and that it will be able to improve things significantly by devoting the necessary time -- and it's a considerable amount of time, because many of our residents are past their peak of productivity; they're very frail and that makes the task even more frustrating. But if the management is convinced that a residents' council can be effective, we think that the rewards can be significant.
But the mere fact that it's legislated is not in itself going to convince the management. They can go through the motions, and if they're not enthusiastic about it, the thing's going to be a failure, and we see that all too frequently. But if the management is convinced that it can do a good job by enrolling the efforts, although they're diminishing, of the residents in trying to provide for their own wellbeing, a residents' council can be a very effective device, and it can contribute significantly to the long-term quality of life for the residents and also, we think, to the efficiency of the operation.
It can develop a rapport between the management and the residents, which can go a long way towards overcoming many of the frictions which make life so miserable for so many people in these facilities, but the management has to be convinced that it's worthwhile. We think it can add to the quality of life, and we think it's one of the reasons why inspection is important. We like to feel inspection is about the same as going to the dentist: If you're in good shape, you've nothing to fear, but if you've got a mouthful of trouble, you hate to go. The ones who hate to go are the ones who usually need it the most.
In closing, I'd like to thank you all for your time and attention and the opportunity of being here. We appreciate the support we receive year-round from the department in our efforts, and we look to your continued goodwill in the future. Thank you very much for your time.
The Chair: Thank you, and may I, on behalf of the committee, thank the two of you as well as the other members who have come down today. As was noted, you're having an executive meeting this afternoon. If there is anything from it that you would like to bring to the attention of the committee, we would be delighted to have it. If you could make it available through the clerk of the committee, that would be very helpful. Thank you again.
CONCERNED FRIENDS OF ONTARIO CITIZENS IN CARE FACILITIES
The Chair: I call on our next presenter, the representatives from Concerned Friends, if you would be good enough to come forward. We have a copy of your submission. Please make yourselves comfortable. Welcome to the committee. We hope you didn't have to shovel too much snow to get here this morning.
Mrs Freda Hannah: I was stuck on the subway for a while.
The Chair: Right. Everything is not working as well as it ought to. If you would be good enough, first of all, just to introduce yourselves to the committee members and for Hansard, then please go ahead with your submission.
Mrs Hannah: I'm Freda Hannah, and I'm the president of Concerned Friends. This is Eleanor Murphy, who is on the board, and we're both on the advocacy committee. Eleanor's been with the association for eight years, and I've been around four years.
Concerned Friends is a volunteer advocacy organization which has been working on behalf of seniors in the province of Ontario for 11 years. Our goals are to address the quality of life issues in long-term care residences, to work for constructive changes in statutes and regulations and, most importantly, to provide information to residents and their relatives concerning their rights and responsibilities under government legislation.
We commend the efforts of those who are responsible for the development of the new proposed standards and guidelines for the long-term care facilities. That probably sounds strange coming from Concerned Friends, but we were in on this from the very beginning, and we felt the original standards and guidelines were a great improvement over the last guidelines. They're not perfect, but we felt they were addressing a lot of the problems that we deal with through the year. We only hope they won't be changed, with all the input, so much that we won't recognize them. I believe in input, but I hope the grass-roots problems are going to be addressed.
The amendments in Bill 101 show a determination for the progressive restructuring of the long-term care system in Ontario. As with any major change in a traditional and ingrained system, the transition period may prove to be fraught with unseen difficulties. In some instances, the impact on the consumer of acknowledged difficulties will be underestimated. Concerned Friends has reviewed the amendments, and we submit our comments and recommendations regarding the following areas, and we've just listed those in the bill.
Subsidies: We support the equalization of subsidies to long-term care facilities. Subsidies for seniors must be clarified and made public. A concern has been expressed repeatedly by seniors who call us that the phase-in period of this plan may cause unexpected financial, and thus emotional, hardships for seniors in residences and those on waiting lists.
There is an increasing fear among some families as to the eligibility of their relatives for subsidy. Residents whose copayment will increase by approximately $330 a month, or $11 per day, will benefit from a graduated scale of increase to the maximum over a period of time. This will allow for an adjustment period to a lifestyle with less money. We're looking here again at little problems like will they have enough money to pay a podiatrist, to have their hair done, to buy gifts for their grandchildren and families and so on. This may have a big impact on a lot of seniors.
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Service agreements: We support the service agreement as a comprehensive tool to increase the factor of accountability for service delivery.
Control of admission and placement coordinators: The development of centralized access and controlled admissions by a placement coordinator is a progressive step. We do however have strong recommendations for this area. The coordinator must be well trained in the process of assessment in the areas relating to social, psychological, emotional and physical needs of seniors. The components of case management should be examined carefully to ensure that seniors and their representatives do not fall into gaps within this new system.
The bill is unclear as to how extensive the range of case management tasks will be. So we recommend:
-- Clarify the responsibilities of the parties concerned should a placement break down. For example, a senior who has Alzheimer's disease may suddenly become aggressive and abusive when placed in a long-term care facility where there is noise and confusion. If the facility is unable to adjust to his or her behaviour and it results in harm to this resident or others, who will resume the case management responsibility?
-- Clarify the rights of the families within the appeal process to ensure both fair representation of their concerns and a full and satisfying quality of life for the resident.
-- Define the lines of accountability, for example responsibility and reporting, regarding the placement coordinator.
Concerned Friends emphasizes the need for the improvement of the placement process because of the 11 years of continuous complaints about the current process. This following scenario is one that we deal with over and over, and I've just gone through this within the last two weeks with several families. This is where a person is now in a hospital, probably had a stroke or a broken hip, and the senior has made no plans for the future.
A hospital team determines that a senior would be better served in a long-term care facility. The family, if there is one, is notified. The discharge planner gives the family a list of available facility beds. The family visits the facilities on the list. The family's unable to find a suitable home. Now, by "suitable home" I'm not talking about the Ritz. I'm talking about a place that's clean, there's kind staff and they're made to feel at home -- well, similar to home. The family, of course, examines each one carefully.
The discharge planner informs the family that they must move the relative to the first available bed or they may be charged the per diem hospital rate. If the senior has no family or representative, the hospital will transport the senior by ambulance to a bed, and that's the first available bed in a long-term care facility.
This causes overwhelming strain and frustration for most families, because they feel there is no choice. They must take what's there whether or not they are going to be happy there. It may not even be in their area. This is one reason why there are so many unhappy residents and families in long-term care.
Quality assurance plans: The ministry should add a procedure whereby external parties, such as family members and/or representatives, residents' councils and/or members of a professional body such as advocates, be incorporated into the quality assurance committees.
We note that quality assurance plans are an essential factor in monitoring the plan of care and ensuring that standards are met. However, we wish to stress that these plans can often become merely well-documented guidelines for service delivery and operations. That means they may look great on paper but they're not really being carried out in the hands-on care. The self-monitoring system can become weakened by time constraints and vested interests.
Waiting for accreditation councils and compliance officers to uncover the weak points in the system seems to us to be putting the residents' interests in jeopardy if for example the problems go unnoticed by the inspectors for six months or a year.
The external parties should also be given authority to take standards or quality assurance issues forward to an external committee of the district health council when their concerns are not being noted and acted upon at the quality assurance council.
Plans of care: We agree with this amendment, however the definition of "resident" must include "representative"; for example, "resident/representative." We, Concerned Friends, have discussed that many, many times when we've been sitting on committees. This would ensure that an individual with severe impairments would have the right to be represented by a friend, a neighbour, a family member or an advocate.
Staff must meet the minimum standard of literacy in order to implement an individual plan of care. This is essential in a multicultural society.
Inspections and sanctions: This is where we take a hard-nosed approach compared to other groups. The proposed monitoring system is satisfactory as described if it is implemented effectively. Some facilities appear to comply with the regulations, others have been in flagrant violation of the regulations to the detriment of care, comfort and quality of life and adding to potential risks of life.
We recommend:
-- Rotate long-term care advisers/inspectors at least every two years to avoid relationships that may develop between inspector and service provider to the detriment of residents' welfare.
Families often fear reprisals against their relatives or loss of residential placement if they voice complaints without anonymity.
-- The residential services branch should conduct a consumer satisfaction survey as part of its annual review. These questionnaires should be sent to families and/or representatives prior to the on-site inspection. These confidential responses should be returned to the residential services branch. This will provide accountability to the consumers by providing a profile of the quality of care provided by individual facilities.
We support the sanctions described in Bill 101. We would add the following:
-- Fines should be graduated in amounts to recognize the seriousness of violations as they relate to residents' safety, care and comfort, and should be increased in amount for each day of non-compliance.
-- Notice of enforcements should be reported to residents and families and published in the local newspaper. The general public would be made aware of conditions in their local long-term care facility.
-- Invoke the Health Facilities Special Orders Act, 1983.
When governments, federal, provincial and local, truly endorse the full spirit and intent of their legislation, standards and guidelines, when all owners, staff and unions of long-term care facilities make a concerted effort to provide a service that ensures the dignity of full quality of life for residents, then long-term care facilities will provide a viable residential choice in the community.
I want to thank you for the opportunity to present our comments and recommendations on behalf of the residents and the representatives whom we have assisted in long-term care facilities.
The Chair: Thank you very much for coming before the committee today for your brief. I think many of us have links with members of your organization in our own areas and we're delighted that you could be here today. We'll begin our questions with Mr Owens.
Mr Stephen Owens (Scarborough Centre): Welcome, Ms Hannah and Ms Murphy. Nice to see you again. The scenario you outline on page 3 of your brief almost sounds like a case that's come out of my office. You're absolutely right that in many situations people are being devolved from hospitals with little choice in where they go. The one thing that is missing here is the threat from the hospital that if they're not out by such and such a date or time, they -- the patients and their families -- will be charged an exorbitant rate to stay.
A little bit further down you talk about quality assurance plans. I heard a phrase yesterday when we were in Thunder Bay, "total quality management." Does this mean anything to you?
Mrs Hannah: Oh, there are so many. That probably means the same thing.
Mr Owens: In terms of care for the seniors in residence, not only seniors but other residents of long-term care facilities, what does that actually mean? Does it mean anything to you other than a new management buzzword?
Mrs Hannah: Yes, it is a buzzword. I have to say that, I think. However, if the plans can be set up and if they're fully operational and the staff will understand these plans -- this again requires staff training. That is a big problem as well that we haven't addressed here but we certainly have addressed many other times. I understand there is a committee set up now, a resource committee, to look at standardized training for health care aides, and we have a board member on that. That's a step forward.
Mr Owens: Yes. I think you're right. You hit the nail on the head again on page 3 of your brief when you talked about the self-monitoring system that can become weakened by time constraints and vested interests. I think the message is quite clear. Based on some of the experiences I've had in my own riding, in which your group has rendered assistance, that is clearly the point that needs to be made. I'm certainly not a lawyer, but when I review the inspection process that's listed in Bill 101, it's by no means the most coercive inspection language that I've ever seen.
In your view, do you feel it's necessary that we have reasonably tough language around inspections so that we don't have to wait until a system becomes weakened until the system can respond?
Mrs Hannah: Yes, we do. For example, as we mentioned, some of the homes are well run. We know them. Of course, we don't hear from people who live in some of those homes.
Mr Owens: That's right. Exactly.
Mrs Hannah: We do know there are well-run homes and I don't feel they probably need this type of inspection, but for those homes that are constantly in violation -- I review all of the compliance reviews where they have violations. I get that on every home in Ontario and it's not great reading. I look at those and quite often the same homes keep coming back for the same violations. They say they're going to change these violations, they're going to correct them, but they keep coming back over and over. We could name them actually. You can too, I'm sure, because we worked on the same places.
Mr Owens: As a matter of fact, I can.
Mrs Hannah: I think maybe more time should be spent on those homes. When I was sitting on the committees looking at the standards, one complaint that a lot of the administrators had was that they felt these standards were an insult to the staff, that they all know what to do. Our concern or our comment to that is: "Why worry about it if you're doing a great job? Don't worry about it. You know this. Leave this for the people who aren't doing a good job. They do need detailed guidelines for staff, at this point anyhow."
Mr Owens: I think that's an excellent point in terms of training. I think you may agree that it takes a special person to work in a facility that serves residents, whether they're seniors or other residents of long-term care institutions. I guess the challenge for the government is to make that job competitive in terms of salary and training, so it actually becomes a job choice rather than a place to make the rent money for a couple of years.
Mrs Hannah: That's right.
Mrs Fawcett: Thank you for coming today. Actually, I would like to pose a question on page 2, when you said, "The bill is unclear as to how extensive the range of case management tasks will be." I just wondered if the parliamentary assistant could help us out with that one question in the dark print there, "Who will resume the case management responsibility?" Should a scenario like this happen? Would you have clarification?
Mr Wessenger: Yes. Thank you for raising that issue. I'm going to have staff explain it. I thought of the same issue, so I appreciate your raising it.
Mr Quirt: The question is, who would assume responsibility for looking for an alternative placement for a resident who may have been appropriate when first admitted to the facility but acquired a need for a service that couldn't adequately be met in that facility? It would be the responsibility of the facility staff to alert the placement coordinator that an alternative setting might be necessary. The placement coordinator would assume responsibility then for finding an alternative placement if that was the appropriate way to meet that resident's needs.
I think it's important, however, to note that certainly our preference would be that every effort be made to provide services appropriate to the resident in that facility, the facility that presumably the resident had chosen in the first place, and the provincial consultative resources could be made available or other resources made available to allow the facility to meet its obligation to the resident it had admitted. Moving residents, because of a problem being encountered in their care, is a far less attractive option than equipping the facility to deal appropriately with the resident they have in their care and to provide them with the assistance they might need to do a good job in doing that.
Mrs Fawcett: Also, on the idea of inspection, we've heard from several people that the whole idea of inspection, policing, is really a step backward when you put it versus the continuous quality improvement that we would like to see going on, because if you just have a level that you have to meet then maybe you're not encouraged to make it better; and we can always make things better. We've certainly heard from numerous people who are doing a good job that they resent that whole inspection idea. I'm just wondering if you would like to further comment on that.
Mrs Hannah: I think to the extent the inspectors, if they aren't getting complaints from families and residents, know where the homes run well and don't, as you say, police them in the same way, they give them more time. They may not have to have an inspection every year, maybe every two years. That to them is a compliment, for one thing, that they're running a good home.
We have a report called the Report Card. If anyone wants a copy of this, you can look at our findings in 1990-91. As I said, I review all these complaints or the reports that come in and I can tell you that a lot of the homes just don't change, many of them don't. So therefore, I think these people have to have a different type of inspection, and they take advantage of the other system.
Mrs Fawcett: From what I could understand, this whole change to better qualit and always making something better -- I mean, homes were getting better, whereas now they really feel that this is just an affront and that it's a step backwards.
Mrs Hannah: It could be with some of them, but I feel that if administrators and directors of nursing or care want to do more than the standards, and there's lot of room there, they could go ahead and do that. That's why we like the standards overall, because they are going to hopefully bring up the level of care in some of these homes that are poorly managed.
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The Chair: Mrs Marland.
Mrs Marland: First of all, I want to congratulate Ms Hannah and Ms Murphy. This is a very dynamic presentation that you bring to this committee today. We've just been handed your Report Card for Ontario Nursing Homes, January 1990 to March 1991. Just glancing through this, this is a very comprehensive report, and what a tremendous amount of work this must represent on the part of your organization. I wish something like this had existed in the 1970s when I had a family member to place. I really commend you as a non-profit volunteer organization for your kind of dedication. Concerned Friends is certainly the most apt name for the work that you're doing. I think it's just wonderful.
I'm wondering if you're experiencing a level of frustration with Bill 101 or whether you feel, overall, the people whom you've been concerned about in the past are not going to need you in the future. Do you have that much confidence in Bill 101?
Mrs Hannah: No. We'll always need advocates. Even in the best-run homes, there will be a need for advocates now and again.
Mrs Marland: As a volunteer organization that practices advocacy every living minute, how do you feel about having an advocacy bureaucracy with paid advocates now being established? How do you feel that'll impact your work on behalf of clients in long-term care?
Mrs Hannah: We're hoping it will lessen some of our work. We have no legal authority whatsoever.
I'll just tell you a little story. Last week I went into a home because a woman whose husband is living in this home was having a dreadful time. I won't go into the details, but I felt really badly about what was going on. She had tried to go through the system to talk to the administrator and the director of nursing, and she was told to call me or call Concerned Friends. So I went in, and her complaints were legitimate, for sure. The home found out that Concerned Friends were in there. So they summoned her to their office and told her she should not be working with Concerned Friends, she should be reading books on gerontology instead, and that she needed counselling because she was concerned about her husband, who had gotten outside, fell into a snowbank in his wheelchair and then later went down a flight of 15 steps.
I don't want to go in, and we don't like to go in, and be confrontational. I hate that myself personally; I don't like that. I was prepared to go in and sit down and talk with the administrator and the director of nursing and try to settle these problems because I don't think the problems are huge. I think they can be settled, and this lady will be happy. But they treat her like a child and they're not going to give in to her. That's what it sounds like. You're concerned about advocates being confrontational; let's look at the other side, of the people who are in the homes.
I know the government will be training staff and administrators and so on regarding advocates and hopefully the residents are going to be informed as well or educated. But how many families are really going to call in advocates if they know there are going to be problems around it? So the advocates have no reason to be confrontational when they go in, absolutely none, because it's not going to help the resident at all.
The Chair: Final question, please.
Mrs Marland: We're almost out of time?
The Chair: No, go ahead.
Mrs Marland: In the example that you gave, the irony is that you could have been talking about -- you weren't, but you could have been -- my sister-in-law with my brother, just over a month ago. She was told she should be reading books, understanding and getting some counselling herself. So I guess some of these facilities -- and this was a non-profit, government-run facility; it wasn't even a private facility that I'm speaking of -- have the same lines. But it's a great deal of concern for the families, I know.
Mrs Hannah: Yes, it is.
Mrs Marland: On page 3 where you talk about this frustration of placement, you say: "If the senior has no family or representative, the hospital will transport the senior by ambulance to a bed in a long-term care facility.
"This process causes overwhelming strain and frustration for most families because they feel there is no choice."
This business of the placement coordinator and the choices of where, the location, the type of facility, the access for family members to be able to continue visiting and making the adjustment for the resident leaving home, perhaps for the first time and going into a facility, are not happy situations. They're not happy times. Do you feel that one individual, namely the placement coordinator making that decision, is too arbitrary?
Mrs Hannah: I don't know. It sounds that way, yes. But I feel if the family, and of course the family and/or friends or advocates, must be involved in this and have a say in this. I don't see it as the placement coordinator just simply saying, like they do now, "You go here." The big problem, and why it's hard to answer, is because there won't be enough beds to go around in the future.
Mrs Marland: Exactly, that is the problem.
Mrs Hannah: If the nursing home people who are residents who are now living in rest and retirement homes were to come into the nursing homes, into that area of the long-term care, they'd be overwhelmed with people. There just wouldn't be enough beds. That's where the problem is going to be. It sounds great to be able to say, "You're going to have a bed in your community and if you can't get into that bed, you go into another home." I'm working with a case right now on this. You'd go into this other home and then when a bed becomes available, of your choice, you will go in there. But in all probability, you won't because there will be an emergency from the community who will have to have that bed, and you are in a bed, so that's where you'll stay.
Mrs Marland: That's right.
The Chair: Thank you. Parliamentary assistant, one point.
Mr Wessenger: Yes, I just have one quick question. You made a comment that you felt that some facilities take advantage of the system with respect to the existing compliance in the inspection system. I wonder if you could elaborate on that for the committee.
Mrs Hannah: I feel, when there are violations, the home is given time to correct the violations and they state how they're going to do it. But they don't always correct them and then when the inspector does a follow-up, the same violation is there or it may be corrected, but then in a year from now, when the annual review comes in, you find the same violations again.
Right now, if there's a shortage of beds, they tell families, "If you don't like it here, go somewhere else," knowing full well they can't.
Mr Wessenger: I don't want to suggest to you, but it would seem that if you have problem of recurring violations, you need a more flexible inspection process. Is that what you think you need, to pay more attention to these facilities that are clearly having repeat situations?
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Mrs Hannah: Right.
Mr Wessenger: Fine. Thank you.
The Chair: Thank you very much on behalf of the committee for coming here today. We appreciate your brief and also the answers to our questions.
CONSUMER COALITION ON LONG-TERM CARE
The Chair: If I could call our next presenter, the Consumer Coalition on Long-Term Care and disability issues. If the representatives would be good enough to come forward and, as they do, if I could just note to committee members that Miss Caplan has talked to the Chair and also to some of the members on the committee to permit one final person to come briefly before the committee at 12 o'clock or when we finish this particular group. This concerns the case we've been discussing that she raised both in London and yesterday in Sudbury. So there would be one final presenter, but that will be following this one.
First of all, let me thank you both for coming before the committee today. We have your submission and other attached documents that are being circulated. If you would just be good enough to introduce yourselves for the committee members and for Hansard and then please go ahead with your submission.
Ms Patti Bregman: I'm Patti Bregman, and I have been the consultant working with the coalition. I'm working as a lawyer at the Advocacy Resource Centre for the Handicapped, working on long-term care and other issues. For the record, I should say that I have also been a long-time user of long-term care services. I've been doing home IV therapy for seven years now. I'm probably one of the people who has saved over 180 days a year in a hospital as a result. So I do have a very personal interest.
The Chair: We should issue you a cheque at the end of the presentation.
Ms Bregman: That's right; seven years.
Mr Sam Savona: I want to thank you for having us. My name is Sam Savona. I'm the coordinator of the Consumer Coalition on Long-Term Care. I myself live in an SSLU. I've been living there for about 16 years, and in particular in this one, the tenants have seen a revolution, from not having a representative on the board of directors to having a majority on the board of directors. I may add one more point, that I am presently the president of that board.
Ms Bregman: There's one more thing that Sam had asked me to indicate earlier, that if anybody has trouble understanding him, if you'd just indicate it, I can interpret back for you. I think most of the comments are written, but we may diverge from that.
The Chair: Thank you.
Ms Bregman: Basically, knowing that Concerned Friends was ahead of us and would do such a wonderful job of making presentations on the issues with respect to seniors and the residents and nursing homes, we're going to address Bill 101 and put it into a context for you because, despite what the parliamentary assistant said before about legislation that may be forthcoming, we have a great number of very serious concerns about Bill 101 going forward as it stands now without any other legislation that's going to protect us in the community and with respect to housing.
In particular, we're going to link this to Ernie Lightman's report on unregulated accommodation, because both at ARCH and PUSH in the last six months we have seen an unprecedented increase in the number of calls from individuals, living in support living units, living at home and living in institutions, who are having services cut, threats of service cuts or threats of eviction.
Basically, what has happened is that we have developed a very large system of unregulated care outside of the regulated sector. What concerns us in the context of Bill 101 is that we will see a nice process for getting into certain long-term care facilities but absolutely no indication of protection for the people who are currently living in substandard conditions.
We've got Professor Lightman's report. I urge you, if you have not already heard from him, to ask him to come before the committee to discuss some of his findings. This month alone in Windsor there have been two inquests coming out of unregulated housing. There have been fraud charges against a chain owner of one of the largest unregulated housing operators. As you can see from the two situations which we've attached to this brief, there have been problems in Windsor with somebody receiving attendant care services, and we are currently working with the Peterborough legal clinic on behalf of the residents of Peterborough who are threatened with eviction on Monday. I should tell you that we have made it known to the landlords that we will fight this and that we will challenge the exemption under the Landlord and Tenant Act.
However, we consider it within your mandate and within the scope of Bill 101 that in order to address long-term care and even residential care, movement has to go towards doing two fundamental things: one is to separate housing and services, because currently there is that linkage, and I'll talk about it a little at the end; second is to make sure that people living in this accommodation have the same rights any other tenants in the community have, because without this, we will see a fight for the perfect resident. I think we saw some of that a bit this morning and with good reason. Residents want to think that they're going to live with other people who are like them; they don't want to live with people who may have a psychiatric disorder or somebody with a psychogeriatric problem or who has HIV or AIDS.
What we're finding is that, as it becomes more profitable and acceptable to exclude categories, we're going to be left with, as we see in Peterborough, this group of people nobody wants. Unless we build along with this legislation some kind of protection that's going to make sure those people don't get constantly shifted from place to place, we're really concerned about the safety that they are going to face. Believe me, if they go through with the eviction in Peterborough -- we've heard it said by people in the community that the owners have tried to get one of the people recommitted to Kingston psychiatric facility. They want to put them in hostels that are used for men coming out of Kingston Pen. This can't be allowed to continue.
We have a great deal of concern that the message this legislation sends is that there is only one category of residents worth protecting and that with the Lightman report being ignored, it's sending the wrong message and leaving these people unprotected. I will get back to that, but I did want to turn it over to Sam to talk about the direct funding, which is the other critical issue for this community.
The Chair: Just before Sam begins, if there are any difficult parts of his presentation, I'll just stop perhaps and ask if you could help the committee.
Ms Bregman: Sure.
The Chair: Thank you. Please go ahead.
Mr Savona: My name is Sam Savona. Direct funding must apply to a broad range of services, including, but not limited to, attendant care services. As I am sure you are aware, direct funding of services has long been a goal of people with disabilities, particularly those with mobility impairments who currently rely on attendant care, myself included. Although some people with disabilities are currently receiving care through orders in council, most people with disabilities are currently restricted to services available through service agencies, which are limited in availability and restricted in the scope of services.
We were pleased to see that direct funding was included in Bill 101 and that it was not restricted to attendant care services. This is important since there are many people currently receiving services not strictly defined as attendant care who would benefit from the ability to hire and train their own providers or at least have some control over the process. However, as it stands, this amendment is permissive only: There are no guidelines or indications as to who will receive direct funding and in what circumstances. I'm having a hard time.
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Expanded access to direct funding for long-term care services: We believe that the reason for the amendment is to allow for the funding of a pilot project. In our opinion, the time has come for the development of a more comprehensive program of direct funding. We already have years of experience on direct funding of attendant care through those people now funded through orders in council. In addition, the Workers' Compensation Board has used direct funding for several years, and there was recently a committee established under the auto insurance reform to look into direct funding.
We need to move swiftly to develop a fair, comprehensive program that will expand the range of services available and increase the number of people eligible to receive direct funding. This is critical if we are to respond to the increasing number of calls that we are receiving at PUSH and that ARCH is receiving from people who are having services cut amid allegations that they do not get along with the people the service provider wants to send or who cannot get the appropriate services because there are program restrictions.
Ms Bregman: I'm going to pick up here because we're talking a bit about the case that came out of Windsor, which is not the only case that we've heard about, and this is women with children. Women with disabilities can and do have children, and they're encouraged to do so, yet they turn around and find out that attendant care services will not assist children regardless of whether or not they're assisting the parent. In this case, they refused to cook dinner for the children. We're not talking about babysitting or child care; we're simply talking about serving the two children when you're cooking dinner.
In this case, the mother, for nine months, was afraid to complain to the agency because she knew if she complained she'd get nothing. The children were forced to kiss the picture of the attendant's cat in order to get fed. This went on, she complained about it and they said, "No, you're neurotic." She complained again and finally she started a branch of PUSH Windsor, after attending our long-term care conference this September. Then they said, "We're cutting you back because nobody wants to go and see you any more," which was blatantly not true.
We're pleased to say that the Ministry of Community and Social Services has stepped in and to date there's been no service cut. But she's not alone. We've had several calls at ARCH from women who have been threatened with a loss and in one case have lost custody of their children. That's not acceptable. Yet we see, because we're not dealing with the community -- we've got these service providers thinking they can do what they want -- we don't have any protection. We're going to see more and more of this grow as people move outside that restricted sector.
I want to go back to the housing and residential issue, because I think it's important to understand what's going on here. Under the Landlord and Tenant Act, it exempts places that provide housing for care or therapy. This was done a long time ago. We are challenging this as being contrary to the charter. However, until that happens, this still exists and many operators still assume that's how they will operate. We now have 993 people living in support service living units who are not entitled to the same protection you and I are, including Sam, who is obviously quite competent to make decisions, but simply because he's forced to live in a place, because he needs service, he doesn't get it.
I think we need to think about this in the context of Bill 101. We would like to see the bill expanded to make it very clear that the service separation applies across the board and that housing becomes regulated.
Mr Savona: If I --
The Chair: Sorry, just before you go on, Sam, we're going to go through the whole brief. I know there are going to be some questions.
Ms Bregman: Yes. I actually wasn't going to go through the rest of it in its entirety. I just thought I would briefly outline.
The Chair: Yes, that's fine. I appreciate that.
Mr Savona: If I may make a point here, as Patti said just now, I am a receiver. To give you one example of what is happening out there, last year I went through an ordeal myself. I wasn't able to have my bath for weeks. After eight years my attendant decided that the way they were lifting me in and out of the bath wasn't safe. This was after eight years, without talking it over with me to see if there was another way or to get my own opinion. They decided arbitrarily that they were not going to lift me in and out of the tub.
Ms Bregman: It's this kind of constant "we own you" attitude. In other words, in most places, if you decide you don't like what the attendant is doing -- in Sam's case, it was suddenly, "Gee, you can't have a bath any more because I can't lift you" -- you don't have any options. You have absolutely no protection against complaints right now. I should say that Sam is now heading up a new tenants' rights advocacy project that PUSH is sponsoring.
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One of the biggest problems we're facing in organizing is getting members who are willing to speak out publicly, because they know they're subject to harassment. Here are people who can't do anything physically. We have people who have been left in a wheelchair overnight because they complained. I think as one of the excerpts from releases that I distributed shows, just talking about the fact that there's a problem in your home is grounds for eviction.
The situations that we see going on on a day-to-day basis and that we get calls about are scary. One of the scary ones -- it goes back to what somebody was saying this morning -- is this question of people who deteriorate. Currently, what happens is there's no protection so they get shoved out. We've had calls from people who've got multiple sclerosis or, in one case, Friedreich's ataxia. Suddenly, while you can't be in an attendant care facility because you have to be self-directed, it doesn't matter that we could bring somebody in for you, we will not let you stay.
Until we get some kind of protection and some kind of recognition that if we're really going to have community living, it's in the community and not what is going on now, which is subsidized institutional living but without the protection of the institutional legislation. Somehow or other, in the very near future -- we can't wait for the next piece of legislation -- we have to deal with it, and I think Bill 101 is a place in which it can be dealt with.
I will stop there. I think the rest of it's self-explanatory.
The Chair: I know there are a number of questions. We really do appreciate the documents you have brought, but if we could then move to questions, and we'll begin with Ms O'Neill.
Mrs O'Neill: Thank you very much for coming. I think if I remember correctly, you are the first ones who have asked us to have Dr Lightman come before us. That certainly is an idea I think we should consider.
Ms Bregman: I should tell you that he would be willing to appear if asked.
Mrs O'Neill: Certainly, I am having a lot of correspondence on the report, but I agree with you that there has been no reaction from this government on it. It's very helpful, Sam, that you would bring even that very last personal story to us. We did meet with the lady you mentioned from Windsor. You likely know that. I think that too was a very helpful presentation.
I think there have been infractions or should I say deep misunderstandings. It's hard to use words stronger than that in committee on the attendant care situation. Can you tell us a little bit about how you feel about attendant care workers and the training they receive? You are part of the group, I understand, who are working on training, both those who receive the care and those who give the care, which presented in one community. I thought it was a good idea. Do you want to say a little bit about how you think the attendant care could either be attended to in Bill 101 or improved in the regulations that would accompany it?
Mr Savona: As consumers, we are always dealing with this issue. We've been hearing that attendant care workers might be regulated or might get a certificate or grading. Our backs go up when we hear the words about the certificate or licences, because attendant care work is very, very personal. Not everyone wants their cup of coffee the same way as the rest of the others. By the way, when I hear that people might be licensed or might be certified, I'm wondering, are they going to take away my individual way of living. Even though I'd be demanding someone come into my own home, and I ask them, "Please give me a shave with an electric razor," and they go: "Oh, I wasn't trained to use an electric razor. I was trained to use a straight razor, and that's the way you're going to get your shaved."
Ms Bregman: We do recognize that there are going to be cases in which people cannot train their own attendants, may not choose to train their own attendants, may need some assistance. We have no objection to having programs around. I'm sure you heard from people from HAGI when you were in Thunder Bay, which is the consumer-run attendant care service provider. That's great. We think there need to be multiple options available. We don't believe in shutting it out, but I think as Sam said, we have a great deal of difficulty with a specific certificate required. It's great to have training available, it's great to have courses, but I would not necessarily want to see that in regulation.
There is some need to deal with some issues of quality assurance, particularly in the area of abuse, and I think we do have to work through how to deal with that, but that's a separate issue.
Mr Savona: Let me add one more thing to Patti's statement. We do agree that there should be some kind of basic training, but I would emphasize this point: I feel my colleagues would agree that whatever training program is developed, the consumer be in on the very first step, at the very beginning, improving and also administrating every aspect of the training.
Mrs O'Neill: You did indicate in your presentation, Sam, your very first intervention. You said you're concerned about who will receive direct funding and in what circumstances; the uncertainty that surrounds that area. Could you say what your concerns are or what are the uncertainties that hang over Bill 101 in your mind in this area?
Ms Bregman: Maybe I'll respond, because I've been doing some of the analysis. We just don't see any guidelines, to be honest. What we want to make sure is that it's not limited simply to a pilot project that goes out there, which we've been hearing about for a long time. We want to make sure that direct funding can be made available for people who need a variety of services. We think a number of people can be independent in hiring, and it will assist particularly women with children, for example.
We just think we should have more of a move towards a direct funding system that will allow flexibility in what people need. We've been running into some problems in the multicultural community, to be honest, with people in attendant care projects or whatever who are told, "The attendant doesn't like East Indian cooking," for example. So I think the more we have direct funding, the more flexibility. We just want to make sure that it's broad and it's not simply restricted to attendant care services.
Mrs Marland: Speaking again as the person for the PC caucus who represents disability issues, I want to thank you both very much for your presentation this morning. It's been a concern of our party that there are so many things wrong with this bill obviously, but in the area that you've particularly presented this morning, I think you're here emphasizing all the concerns that we've had.
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Mind you, I have to admit that as far as attendant care, I've had the disability portfolio now for almost eight years and for that length of time I've been asking questions on attendant care in the House and certainly ARCH and PUSH are well aware of what I've been doing in that area. But, you know, it's shameful really that anybody has to come and ask for something that's so obvious. I think that's the bottom line. This is my last opportunity to sub on this committee, so I might as well hit right out.
What I think has disappointed me most about this particular government is when it was in opposition, it was the party in this province that had the licence for compassion, caring and support. They were the only people, if you listened to them, who ever cared about people with disabilities.
I've got a file of letters here, by the way, and I brought them in this morning because again the committee members have heard me talk about Kathy Harvey who is president of the residents' council at Mississauga Hospital, who is a multiple sclerosis patient since she was 34 and she's about 47 now. Kathy came up with a wonderful idea, which I'm sure, Sam, you would be interested in.
It's an idea where people with disabilities at all levels, never mind people who need an attendant but also people who needs nurses, could have a system across this country which she, for lack of a better name, called bed swapping, but really it's sort of home swapping. It's residence swapping, and if your residence happens to be an apartment or your residence happens to be a hospital bed, that it would be possible to organize this across Canada so these people could travel, meet other people in every corner of this country.
Do you know what's really ironic is, I wrote to the ministers, both Community and Social Services and Health, to put forward Kathy Harvey's proposal and every single province in Canada has responded to this proposal with great support, with great enthusiasm, I have yet to have a reply from any of the ministers in this province about this idea.
So I hold little hope for anything to be changed to address the concerns that you're speaking to this morning, at least to be addressed in the next two years with this current government because unfortunately this government uses people very badly. I think the fact that they won't even pick up on an idea where people can travel and have experience in other parts of this country and perhaps teach people in other provinces what we might be doing better in Ontario or maybe learn something in Yukon or British Columbia that we could do better in Ontario.
The scope of this one program is limitless. It's so exciting and I'm so enthusiastic about it and I don't even get a reply. I think it would be wonderful to have Professor Lightman before this committee. I'm just sorry that I won't be a member of the committee to be part of hearing him or making amendments to the legislation to address recommendations that he might make or to address the recommendations that you have made. But we will certainly convey your recommendations from this morning to those members of our caucus who will be going through this bill clause-by-clause, and I thank you very much again for the tremendous presentation that you've made today.
The Chair: Thank you. Ms Carter.
Ms Carter: Thank you very much and I want to welcome you, especially as the member for Peterborough. Certainly your presentation has filled a gap. We've had far more presentations that were to do with specific seniors' homes and so on. Of course, this reminds us, I think, of the kind of situation that led to the Advocacy Act, for example, where there was the home in Orillia where somebody died, Cedar Glen, because there was really nobody he could appeal to who could rescue him or the other people in the home.
Of course, in Peterborough we have a particular situation that has arisen -- you have given us documentation on that -- where a privately owned home, basically for seniors, which has recently changed hands, issued eviction notices to 13 residents who were people, I think, aged on average about 40, several of them are ex-psychiatric patients, I think they are schizophrenics, but who really, one would think, would need a different kind of institution and a different kind of care to what they were getting in that institution.
It's not good for younger people really to be in the same institution as the very much older people. They have different needs. But of course their immediate problem is that they're no longer even going to be able to live there, so that naturally, the Ontario Friends of Schizophrenics and other groups in Peterborough are very anxious to remedy this situation. They have been to my office and taken a rather hostile attitude that I didn't feel was justified because myself and my staff were very willing to work with them to find solutions, but of course the point is the solutions aren't there. It was suggested that some of them go to a mission, which is mentioned here, which is really for men who are on the street and homeless and is not intended to be a long-term home for anybody.
So what I'm suggesting is that we do in fact have gaps in our view of what is needed. We need to look at that as a government in our legislation. I wondered if you would have any suggestions as to what kind of things we need here.
Ms Bregman: I think ultimately what we need is more development of community support programs that would ultimately enable these people to live in their homes, and to develop the community mental health services. But I think we also need the protection from eviction, even if it's not the most appropriate place. The problem is there isn't any alternative. This is, in a sense, where we find ourselves.
We certainly need more and an increased number of outreach services as well as housing, basically, housing development. But again, it's only going to work in terms of providing more housing and all of that if we provide protected housing; in other words, housing that not only has services that can be brought in if necessary, but basically housing like everybody else's and that has the same rights as everybody else has attached, and that we deal with the service needs and we deal with the other problems in the same way anybody else does. That is by bringing in community-based services. That will give us an incredible amount of flexibility. We wouldn't run into this situation, necessarily. These people could then be moved into private, normal apartments and the supports be made available in those apartments if they were community-based.
Ms Carter: So that the landlord is a landlord in the same sense as for anybody else.
Ms Bregman: That's right.
Ms Carter: Of course, we do tend to forget, people don't have basic rights very often when they're in this kind of situation.
Ms Bregman: What happens and what we've seen and the roomers' and boarders' coalition has seen is that landlords, including the for-profits -- in this case it's fairly clear there's a profit motive -- introduce minimal services and they get exempted from the act. That, we think, is a very serious problem and we're seeing it growing. The courts have decided that absolutely minimal service gives you that exemption. So there is now a phenomenal incentive, particularly with the number of nursing homes beds frozen, I think, as Freda Hannah said, we'll see more people going into unregulated housing to develop this because they can make a lot of money.
We think that it's absolutely imperative that this housing be viewed as just that, that we no longer evict people only because the services aren't the ones that person happens to want or need. What we have right now are institutions in the community, to all intents and purposes, where people have no control over where they go or how they go.
The Chair: Thank you very much. I'm afraid our time has come to an end, but Ms Bregman, Mr Savona, we want to thank you for the presentation, for again the documentation and I think in particular the personal examples and stories. You've brought a dimension that we haven't received every day during our hearings. So we have you again for being with us this morning.
Mr Savona: You're welcome. Thank you, every one of you, for taking the time to listen.
Ms Bregman: I'm sure you'll hear from us again.
The Chair: Thank you. Good.
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SANDY SPRING
The Chair: I'm now going to ask if Miss Caplan would bring Mrs Spring to the table. Perhaps, Miss Caplan, you could just give us the context again. I would just say to members that we'll be fairly expeditious in going through this, as I know we have to get organized to get a flight to Ottawa.
Mrs Caplan: Thank you very much, Mr Chair. I'd like to introduce Mrs Spring. She's a little nervous to be here this morning but is happy to answer your questions.
You've heard the story without the name of the individual in both London and in Sudbury. We've also heard a lot at this committee about choice and flexibility. We've heard that this new long-term care system is supposed to result in a greater sensitivity to the level of care that the individual needs and to the service requirements. In fact, we heard the last presenter make the statement that a person shouldn't be forced to live in a place just because he needs the services, and in fact this is somewhat similar.
Dr Spring, Mrs Spring's husband, right now is in a chronic care hospital here in Toronto. He's been in two chronic care hospitals, and both are requiring that he sleep in the institution in order to receive the speech therapy that he requires. Mrs Spring is requesting the minister and the ministry to tell the hospital that it's okay for him to receive the service but be allowed to sleep at home and spend the evening at home, because in the environment in the hospital he's not sleeping as well, with other patients in that particular unit tending to cry out and so forth. It does interfere with his sleep.
So it's really a question of telling the hospital that it won't be penalized in any way if it's flexible enough to allow him the choice to spend his evenings and sleep at home. I put it a slightly different way. We've talked about the name on the bed not being as important as the person who needs the service. So my suggestion has been to let them leave his name on the bed and then allow him and his family to have the flexibility to see that he comes in for his intensive speech therapy, which is only available in Metropolitan Toronto at this time as part of an inpatient program.
Mrs Sandy Spring: That's about it. That summarizes it very well.
The Chair: Would you like to make a few comments?
Mrs Spring: I did write something out. It's sort of an emotional piece. Are you --
The Chair: Please go ahead.
Mrs Spring: All right.
The Chair: If you wouldn't mind just approaching the microphone just so that we can pick up what you're saying. Thank you.
Mrs Spring: My husband, Dr Morris Spring, was a practising physician in general practice up until --
Mrs Caplan: It's okay. You don't have to.
The Chair: Take your time.
Mrs Spring: I want to -- until Tuesday, December 15, 1992. He was on staff at Northwestern General Hospital and a past president of the medical staff. Wednesday, December 16, the day after, 12:15 am, my nightmare began. I woke up to find my husband incoherent, and I knew immediately he was having a stroke. I telephoned my nephew Jeff and he answered. He arrived 10 minutes later and drove us to Sunnybrook hospital. I can't tell you how frightened I was. Terror gripped my very soul. I could not eat or sleep for the next two weeks.
Seeing my husband in a stroke unit with an IV running, a catheter, plus his inability to speak, was extremely devastating. Dr Johnson, the attendant resident physician, told me that first night to be prepared for more possible progress of the stroke and the uncertainty of the prognosis for the next few days, as there was weakness in the right side.
A few days later, Saturday, December 19, the IV was discontinued, catheter removed, and he was sitting in a chair at short intervals. The following day I arrived to find my husband out of bed, walking up and down the corridor. He was able to answer questions with a yes or no. Although his speech was absent, he appeared to comprehend his predicament and was determined to get better.
My sister who lives in Milwaukee, Wisconsin, left a busy law practice to be with me for the next two weeks. She's a tremendous help emotionally to me.
On December 24, he came home on leave from Sunnybrook hospital. It was wonderful having him. He swam 50 lengths in our indoor pool -- I live in a condo -- and helped with all the household chores and cooking. His spirits were good. His being home seemed to normalize our lives and did a world of good for all of us.
He returned to the hospital a few days later, but it was a total waste of time. It was the holidays, and there were no therapy or programs available, as his physicians were on holidays. He was discharged December 31.
Two weeks later, Morris saw Dr Somerville at Sunnybrook, who follows patients who have had strokes. She strongly recommended he be admitted to Riverdale Hospital so he could get daily speech therapy and some physio. She said it was imperative that he have intensive speech therapy daily and anything else would shortchange him and affect his future. He spent three weeks there with weekends at home. There was progress with his speech.
On February 10, we transferred Morris to Baycrest under the care of Dr Morris Freedman, a neurologist, as I thought it would be easier for me to go back and forth. The same rules apply at Baycrest: The patient has to stay in hospital with weekends at home.
Conclusion: To keep Dr Spring in hospital for a couple of hours of therapy is not beneficial to his emotional and physical health.
I'm here to have you change the rules and allow a patient who requires therapy in a hospital to be allowed to have it as an outpatient, contrary to the present rules which insist you stay in the hospital.
That's my story, and it's a happy ending because the prognosis is very good. His speech in the last two weeks seems to be spontaneous. He is speaking more, and he's as intelligent as he was before the stroke. I'm just nervous talking in front of you and thinking about what happened. Going back a bit, it is very disturbing, but the prognosis is very good. When he's at home, our life is just fantastic; it seems almost normal because he understands everything I say. I work with him on his language. I'm just on a cloud right now, although it doesn't look like it, but I am. I'm very happy right now. Thank you for listening to me.
The Chair: Thank you very much, and I'm going to just allow a question or comment from each caucus, but I want to thank you. I know that it has not been easy to come before the committee, but we thank you for doing it and for telling us about what you have been going through, because the intent of all of this, that we all share, is to make the system a better, more responsive system.
Mrs Marland: I can't thank you enough, Mrs Spring, for coming before the committee, because you've told me something that I didn't know existed. I realize it's very difficult for you to come and that this is a very foreign atmosphere. We try to be human, and indeed, speaking for all the committee members, we are.
I just want you to know that, first of all, we're very sympathetic to what you have been through. That indeed has been a tremendous trial, but I cannot believe that there is a requirement to hold a bed during the week in order for your husband to receive this treatment. I thought the direction from the Ministry of Health was the opposite. I thought they were now doing everything on an outpatient basis.
If Dr Spring is able to be home on the weekend, they obviously don't think that he's in any kind of risk being out of the hospital environment, so the absolute absurdity is that he has to stay in that bed Monday to Friday in order to receive his speech therapy and physio. As you say, it's now at Baycrest, so you've had the same policy at two hospitals. I think that you're here as a very strong ambassador today, pointing out the absurdity for all similar patients in this province who live through this.
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Actually, through the parliamentary assistant, I would say to the minister that I hope we can get this remedied immediately. I thought there was a shortage of beds, for crying out loud, and here we have a situation where someone obviously doesn't need a bed, according to his own attending physicians, and doesn't even need the bed on the weekend, according to the hospital's responsibility. So I look to some kind of commitment from Mr Wessenger that the remedy will be forthcoming, it will be addressed and that this bed can be used for someone else in long-term care who doesn't have the option of being at home on the weekend and yet, as in Dr Spring's case, can have the treatment that he obviously needs at this time.
So surely to goodness we can get that kind of commitment, and I think that if there were any days that Dr Spring had to be in hospital, maybe if they extended his treatment one day and he had to be in that particular night, there would be flexibility in a facility the size of the two that he's been in that this eventuality could be addressed if it was a one-night situation from time to time, working in the availability of that bed for respite care for other families that need it from time to time. We're told all the time by the ministry about the cost of one bed in a hospital for one patient, and here is a situation where it's being mandated. It's so backwards it's unbelievable. So I do thank you very much.
The Chair: Thank you. Ms O'Neill?
Mrs Marland: Excuse me, can I get that answer from him?
The Chair: Mr Wessenger will be speaking. I'll just get a few comments from Ms O'Neill.
Mrs O'Neill: This case, as you know, was brought to our committee yesterday, and I heard an explanation from the ministry official who is now walking away. I wonder if he would say what he said in Sudbury yesterday so that we would have some verification that this was the end of the line for this incongruity. Maybe Mr Wessenger will begin and ministry officials will continue.
The Chair: I believe they're going to respond.
Mrs O'Neill: Okay, because I thought yesterday we had some assurance, and I'd like to have that repeated because, as I understand it, some of the assurances were made in conversations after Hansard.
The Chair: I will ask Mr Wessenger to respond, and I just note for the record that this was raised in London as well as in Sudbury.
Mrs Marland: I wasn't in London.
The Chair: No, but I'm just saying it. I'd like to ask Mr Wessenger if he would respond.
Mr Wessenger: Thank you very much for coming here, Mrs Spring. I really appreciate your difficulty and the difficulty of your husband in dealing with these rigidities. First of all, I'd like to assure you there is no government regulation whatsoever which prevents Baycrest from providing outpatient speech therapy. It really is a question of the policy of that particular institution. What I can assure you is that we will certainly do everything we can to try to see that the policy is changed; that's the assurance I'd like to give you.
Mrs Caplan: That's a very specific request, and I've spoken with authorities at the hospital. What they say is that the level of speech therapy that Dr Spring requires is only available as an inpatient service. So there's that issue. The issue really is whether or not they will permit him to spend the evening and stay at home whenever he can or would like. The issue for the hospital is not so much shifting its service from inpatient to outpatient, but it's the flexibility of allowing a designated inpatient to not only have a weekend pass but to also be able to spend whatever other evenings and nights at home that he is able to. It's that policy that I believe they're concerned about. They say that there's a regulation, a requirement for a head count, and that in order to be classified and have an inpatient service available, you must sleep in the bed.
If the minister and the ministry would tell them that they could make this exception and allow an inpatient to sleep at home during the week, just as they allow him to sleep at home on the weekend, that flexibility would give him the choice, and I think it would be a benefit to his wife also. Obviously, what you've heard from her is that they're happier with that.
So it's not just changing your program, it's allowing the flexibility within your existing program for somebody you're letting sleep at home on the weekends to do the same thing during the week if he wants to. I said to put a teddy bear in the bed if you need a head count or get a volunteer to lie down on the bed when you're doing your head count at night; be sensible about this. But they said there's some regulation that says if you're registered as an inpatient, you have to sleep there.
The Chair: It seems to me that the case has now been clearly presented. The committee is going to be sitting for a number of weeks yet. I think we have the commitment from the parliamentary assistant to take this issue back and to look into it so that we will try to get a response.
Mrs Caplan: Perhaps the government could change the policy that would be specific in permitting that for inpatient services. That would be helpful.
Mrs Marland: I don't feel that I have a commitment from Mr Wessenger. I've heard him say that they would look into the policy at Baycrest, but what I would like for the taxpayers of this province is a commitment that where this option exists, there is a mandated requirement from the ministry, which funds these hospital beds through the taxpayers of this province. Obviously, in the long run Dr Spring is going to require less physio and less speech therapy because he is able to be at home with his wife and family. So in the long run it's going to cost less money for that individual patient, but also there's the option of using the bed for somebody else who needs it.
So I think what Mrs Spring has brought to the committee today is not only her husband's example but an example that obviously must exist across the province. I want to hear Mr Wessenger say that he will speak to the minister about a remedy so that we don't have to subject Mrs Spring to coming back a year from now and telling us that this ridiculous, nonsensical bureaucratic situation still exists.
Mr Wessenger: The only thing I can add to what I've said is that I certainly agree there's too much inflexibility in the system, and obviously what you have to look at is making the system more flexible. That's really what we want to look at, making it more flexible and also enabling us to deal specifically with the problem Mrs Spring has. We want to deal with her problem, but we also want to deal with the whole problem of the flexibility of the system.
Mrs Marland: Never mind looking at flexibility. Will you work for a remedy?
The Chair: I believe the parliamentary assistant has indicated that he will do so. Mrs Spring, again, I want to thank you for coming before the committee, and I know, through Mrs Caplan and through the ministry, that you will be kept abreast of what is happening. But again, thank you. I know it wasn't easy, and we appreciate it.
I just note that the plane leaves at 3 o'clock, and I trust that everybody can get there on time. We stand adjourned until we meet again tonight in Ottawa at the Westin Hotel.
The committee recessed at 1240.
EVENING SITTING
The committee resumed at 1840 in the Westin Hotel, Ottawa.
The Chair: Good evening, ladies and gentlemen, and welcome to the first of our hearings in Ottawa. We're going to be here tonight, tomorrow morning, tomorrow afternoon and tomorrow evening to hear presentations on Bill 101, An Act to amend certain Acts concerning Long Term Care.
I would like at the outset just to inform committee members that we have heard back from the House leaders and we have been given permission to meet after the break for two days on clause-by-clause. So the week of March 8 will be hearings, and that will provide us with an opportunity to ensure that everyone is heard. I think that's good news.
J'aimerais aussi dire que nous sommes très contents d'être ici comme comité. Nous aurons trois séances à Ottawa, ce soir et demain, et on va discuter du projet de loi 101 qui touche la question des soins à long terme.
RIDEAU REGIONAL CENTRE ASSOCIATION
The Chair: With that, we'll invite our first presenters of the evening, from the Rideau Regional Centre Association, if you would be good enough to come forward. Help yourself to some water. If there's anything you'd like distributed, the clerk can pass it out.
Ms Molly Morris: I believe that has been done.
The Chair: Okay, fine. I want to welcome you both to the committee. You don't need to touch the mike. We always have to remind ourselves that if you touch them, we all sort of self-destruct, and we would hate to see you disappear. But if you'd be good enough just to identify yourself for the members of the committee but also for Hansard, then please go ahead with your presentation.
Ms Morris: My name is Molly Morris and I'm a member of the Rideau Regional Centre Association.
Mrs Eleanor Bradley: And I'm Eleanor Bradley. I'm the secretary for the Rideau Regional Centre Association.
Ms Morris: Good evening. I'm a member of the executive of the Rideau Regional Centre Association. The Rideau Regional Centre Association is one of the eight member associations of the Federation of Ontario Facility Liaison Groups, parents, relatives and friends of developmentally disabled people who live in Ontario institutions. The federation was formed 12 years ago when it became apparent that the needs of adults who had profound disabilities and who lived in facilities were neither understood nor realistically addressed by the proponents of the policy to close institutions and to use only generic community services.
When I was invited to speak before this committee, I felt I had a lot in common with Hillary Clinton:
(1) It's my relationship that makes me an important person. No, he's not the President, he's a resident of the Rideau Regional Centre;
(2) I've not withstood election to hold my position. I feel, though, that as a member of this advocate group, I represent the 780 residents of the schedule 1 facility and the 583 relatives and friends who are currently members of this association;
(3) I have accepted an assignment that, no matter what the outcome, is bound for criticism; and, finally,
(4) This job has no remuneration.
I appreciate the opportunity to appear before this standing committee. Consultations on the redirection of long-term care and support services and the proposed Bill 101 are directed towards elderly people and those with physical disabilities. However, there's a significant population of adults who are developmentally disabled who require care and services throughout their lives. Many have physical disabilities, mental disorders and, in the cases of adults in institutions, a growing number fall under the category or definition of being elderly. It is on the behalf of these people that I wish to make the representation tonight and to make certain that the special needs of the mentally retarded are included in plans for long-term care in Ontario.
My association with developmental disabilities began the day of my birth. Instead of watching the Victoria Day fireworks, my mother was delivered of me by forceps. As did every good father in the early 1950s, the local vet continued on and delivered a mare of her foal. Also that day my uncle, a physician practising in rural Saskatchewan, set out on a three-day journey by car to the Ottawa Civic Hospital. My mother was overjoyed to see her brother. Then she was shocked and then dismayed. Why was he so concerned about my Oriental features? Two years earlier, he knew of my brother's prognosis. Until my birth, it was beyond his professional ability to share his concerns with my parents. Neither his training nor his expertise has equipped him to share the sadness of his knowledge.
I enjoyed the tender, nurturing environment of a small eastern Ontario village. It was a warm, accepting community. At three, I knew I belonged. When Mrs Evans saw my brother Mark pulling his little red wagon filled with me and our dog, Cocoa, she shared her uncooked sugar cookie dough. Mark also knew that Mr Brown's bakery was the best source of chocolate doughnuts.
At five, I realized that Mark was different. While walking home from kindergarten on the path through the hayfield, Peter, my friend, told me that his mother would no longer allow me to play with him.
After being expelled from grade 1, Mark went to live at the Rideau Regional Hospital School in Smiths Falls 32 years ago. I can only imagine the anguish my parents experienced at this time. Yet, supported by the recommendations of the most qualified experts in the field and worn thin by the demands of four young children, a mentally retarded son and their independent professional practice, my parents agreed to Mark's admission.
My dad, alone, took Mark on the half-hour drive on the day of his admission. Walking hand in hand down the long, busy corridor at Rideau Regional, Mark increased his grip. Neither dad nor Mark had ever seen such a variety of humanity. Dad, betrayed by his tears, increased his grip. Sharing their terror, Mark turned to my dad and said, "Daddy, they're not going to make me blind in here, are they?" My dad did not enter the doors of that institution for 20 years.
I still have my adolescent journals referring to the atrocities that we saw Mark live through. Yes, I understand what Peter Gzowski's guest referred to last year when he talked of such institutions as fruit bowls. Vegetables are closely related to fruits, aren't they?
Fortunately, some years ago, someone saw fit to look at Mark's home as his home. They discovered that the vegetables belonged in the fridge and the fruit bowls could be used for potato chips during hockey games. Mark and his special needs were addressed and served. He was recognized as a human being with intrinsic value in his humanity. His special medical, dental, physical, exercise and nutritional needs were served by interested professionals with expertise in mental retardation and for the most part committed to a long-term relationship. His psychiatric, psychological, vocational, educational, recreational and spiritual needs have been similarly met.
Yes, finally, Mark is at home. This is his home. He shares his swings with my children and never misses a chance to sit down with me for a coffee. He's proud of his bed, his cow in his cupboard, his coffee break from his job, his friend Doug and the rest of the guys and his long-time friends and care givers. It is in this community that Mark is safe and secure and comfortable. It is in this community that Mark is happy and contributing. This is Mark's community.
I've read this part of my submission because I have chosen these words carefully and deliberately. As the sister of a developmentally disabled person and as the mother of a developmentally delayed daughter, I have strong emotional reactions to issues related to long-term care in Ontario. As a sibling and as a parent, I believe I hold a valid, unenviable perspective.
All of the Rideau Regional residents are adults ranging in age from 28 to 75; 85% of the population are over 30 and 45% are over the age of 40. All 780 residents are mentally retarded; 90% are diagnosed in the severe to profound range of retardation. About 80% have been dually diagnosed, that is, they have other problems as well as being mentally retarded, such as epilepsy, blindness, cerebral palsy or deafness: 46% have epilepsy, 6% are profoundly deaf, 16% have cerebral palsy, 33% exhibit severe behavioural problems and 19% are non-ambulatory.
It is the present policy of the Ontario government to close residences such as the Rideau Regional Centre and discharge the residents into the community. There are not the services in the community to serve these people even in the short term, let alone the long term.
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Two years ago, when I first sat on the executive of the Rideau Regional Centre Association, I brought with me my baggage of sibling, parent and qualified educator and social scientist. When faced with the long-standing long-term plans of the Ontario government to close residences such as Rideau Regional, and faced with the concerns of aging parents, families and friends, I began my quest for empirical data to substantiate such discharges and closures. Such data and analysis are not available.
Had any such long-term experiment been conducted on the mentally retarded without consent, scientific tracking and analysis of impact in either the medical or pharmaceutical fields, charges of abuse would have been laid and at the very least the experiment would have been quickly halted.
In a recent CBC radio series on facilities and services for the mentally retarded in the Ottawa area, one frustrated father of a young man no longer served by the Ministry of Education stated that he recently learned that, as a parent, you never eliminate any option.
I request that the process of deinstitutionalization be halted immediately, at least until an informed, comprehensive evaluation is complete, and that congregate care remain an option supported by the Ontario government.
The deinstitutionalization process has certainly helped some people with mental disabilities to achieve some personal growth and goals in the community, particularly those who are mildly retarded. These people were discharged first and moved into the group homes. However, those left in the Rideau Regional Centre with profound and severe mental problems cannot cope in a community setting. All need 24-hour supervision and long-term care. Their discharge into the community is not going to magically cure their conditions. Their discharge will not magically alleviate any of their symptoms. In fact, the evidence to date suggests that their discharge will exacerbate their conditions and threaten their wellbeing.
The medical needs of these people are five to seven times higher than the so-called average person. Disproportional frequency of cerebral palsy, heart problems, Alzheimer's, hepatitis B and choking are typical serious medical problems that not only demand vigilant, qualified staff supervision but also specialized medical care by practitioners who are trained and experienced in working with developmentally disabled patients and who have expertise in the aspects of the disease particular to the mentally retarded. This is a long-term care issue that requires an extremely specialized resource pool that is unlikely to be found in any average community or even in a community supporting a group home.
To illustrate this point, I would like to refer to two situations. Firstly, the leading cause of death among residents of Rideau Regional Centre is choking. This problem appears among a disproportionate number of residents because of the underdeveloped swallowing mechanisms, epilepsy and the effects of anti-convulsant medications. Highly trained staff with appropriate backup medical support must be present for crisis response and intervention to maintain this horrible statistic even at its present level.
Secondly, it was the recent experience of one of the federation institutions that decentralized medical services to the community level that the medical needs of the residents could not be adequately met. From simple waiting room problems to more difficult hospital stays, the problems that presented led to a quick reversal of the decision and medical care was administered in the facility, where the patients were comfortable and the practitioner was familiar with required specialized procedures. Quite a simple analogy would be the rationale for the existence of children's hospitals.
Does it not tell us something when our institutions are being visited by delegations from the United States and Europe? The computer technology and swimming programs at the Southwestern Centre have given it the reputation as state of the art for long-term care and programming for the developmentally disabled worldwide. Is it not logical and humane to consider such operations as best practice, avail the same opportunities to residents of other facilities in a very cost-effective manner and consider such institutions a valuable, viable long-term care option, rather than charging forward in a frenzied, blinded determination to close such institutions?
Until the deinstitutionalization process started, residents of the Rideau Regional Centre and their families felt secure that their loved ones would be taken care of. For the most part, they were pleased with the growth and fine-tuning that created an adequate community. Now the security is no longer there. Community services are not being developed fast enough to look after this very fragile part of our society. Residents are being dumped into isolated group homes without any choice of social contact with their peers. Programs are being cut rather than enhanced. Once a resident is discharged, the ties have been permanently severed. The ministry has not seen fit to track discharged residents, nor use tracking in the evaluation of this policy. Tracking of the developmentally disabled discharged from institutions is almost totally ignored. This cannot be tolerated. It is the basis for accountability. The Ontario government is accountable for funded community services. Incidents such as the emergent closure of the Delbert Ranch Homes for the Autistic in Alberta raised strong concerns regarding arm's-length accountability in the private operation of long-term care group homes.
I strongly object to the related statement from the facilities planning project, central region, Ministry of Community and Social Services, May 1992, recommending the closure of Oaklands Regional Centre. I quote from that document:
"From this point forward, community-based services should be the sole model of choice in terms of program development. If future institutional care is deemed necessary, it should occur only through mainstream facilities, eg mental health, corrections, etc."
This population needs special care. Because of their disabilities, they age faster than the so-called normal population. They need intensive nursing care. They need 24-hour supervision. They need an opportunity for social contact with their peers. They need programs that can help them obtain some basic social skills, such as dressing themselves or toilet training, or the help of an occupational therapist in improving their motor skills. All their needs are looked after at facilities like Rideau Regional Centre. No one has ever given me a logical explanation why the Ontario government wants to close Rideau Regional Centre and discharge the residents into isolated group homes without services to adequately look after them.
I'm not sure where the crossover is between the Ministry of Community and Social Services and the Ministry of Health regarding long-term care for the mentally disabled. Along with the authors of the above-mentioned report, I too, through unfortunate experiences, have made the connection to Corrections. Is this really what our government is seriously proposing for long-term care options for the severely and profoundly retarded -- jail or the asylum? To me it makes Peter Gzowski's fruit bowl sound attractive.
The mentally disabled need assurances of long-term care facilities. Their aging families need assurances that the services will be there for them. Our society must recognize their needs and the perils presented in proceeding further without complete and objective evaluation. On behalf of these people, I ask that the special needs of the mentally retarded be included in plans for long-term care in Ontario.
The Chair: Thank you very much for your presentation, both for your personal comments -- I think only those who are directly involved, as you are, can express those thoughts to us -- as well as for all the additional material that you have provided at the back of your presentation. We'll move now to questions and begin with Mrs O'Neill.
Mrs O'Neill: I'm very pleased that the standing committee on social development has returned to Ottawa and has returned on a subject as important as long-term care, and I'm particularly happy that the Rideau Regional Centre is our first presenter.
The quotation that you have presented, "From this point forward..." has been presented to us before. It is a quotation I have a lot of difficulty with, because when we talk about a "sole model of choice," if we use any dictionary of the English language, we are assured that those two words, "sole" and "choice," have absolutely no relationship to each other. In the future, if institutional care is deemed necessary, it should occur only through -- so we are being told exactly, in a very autocratic manner as far as I'm concerned, how people who have been very traditionally and very historically well cared for are going to be treated.
I asked the question of other presenters, particularly in the Toronto hearings, about how this whole thing got connected with mental health and Corrections. There were parents who were presenting to us from other facilities and I was most disturbed when I heard how Corrections got involved. I had not presumed that that's the only alternative in some cases. So I'm very, very happy that you've come forward with particularly such a personal story. Have you, with your executive -- and I understand you're a member of the executive, Molly -- thought about how Bill 101 could be changed to include you? Maybe I could help. Have you seen it as part of the broadening of the direct funding model for the physically disabled, or do you see yourself in another part of the bill?
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Ms Morris: I have been looking at some materials regarding Bill 101, and I can't put my fingers on them at the moment, but I remember a document that specifically referred to institutional versus home kind of funding. I don't know if that's sort of a skirting, round-about response to your question, but there certainly needs to be, in my belief anyway, a congregate care facility model.
My concern about indirect funding and arm's-length kind of accountability is the very concern I raised with the Delbert Ranch Homes for the Autistic in Alberta. Where there is an appointed or an elected board of directors, accountability on a volunteer basis is a safeguard but -- I guess my concern comes partly too from dealing with such vulnerable populations. I'm not anxiously looking forward to the day when I'm in an institution, but I can just see myself being this little old witch with my mental facilities still about me, and I have so much more power at that point than do the people I'm representing tonight.
So I guess the answer to your initial question is no, I haven't come up with a solution, but I'm concerned with the haste -- even though it seems like a long period, 12 years, that they've been trying to close institutions like Rideau Regional Centre -- and with the lack of evaluation and scientific study of the outcomes and without looking at the cost-effectiveness of caring for people in institutions, as far as the people with severe, profound problems and with extremely high need I'm representing tonight are concerned.
Mrs O'Neill: I guess what you're saying is that you're challenging those of us who have an opportunity to place amendments that we would include you in Bill 101.
Ms Morris: That's correct.
Mrs O'Neill: Certainly you're not the only one across the province who's done that, and I think that's what's healthy. We've heard the very same message right across the province regarding the developmentally disabled who are already in congregate care. So thank you so much.
Mr Randy R Hope (Chatham-Kent): Thank you very much for the presentation. In your story today, you made reference to the one in the southwest area, the Southwestern Regional Centre, which is in the neighbouring riding to mine. I know through the family auxiliary I've got myself into some trouble at times about some comments that I've made, but I know, through the families, they've expressed the same concern that you have. I guess a lot of them were saying, "Where does this all fit with long-term care and the multi-year plan, and where is this all put into place?"
I understand your concerns about those with multiple disabilities being able to work in the community or make do in the community, and I guess it's hard for most people to understand, unless they've been to one of the dances that are being held at the centre or participated in the fun day programs that are out there. They have a hard time really understanding what these people are coping with or what the individuals are coping with.
You're saying, "Where does this fit with long-term care?" I guess I have to ask the question, doesn't the multi-year plan, which was initiated by another government, take care of those who are developmentally disabled or mentally disabled? I know there are conversations taking place right now about the multi-year plan phase 2 -- I guess plan 1 wasn't all there, so there's plan 2 that's now being developed -- and I'm wondering what you see yourself in the context of the work that's taking place around the multi-year plan in the context around long-term care.
Ms Morris: One of the comments that I'd like to make about the multi-year plan, and it may not specifically answer your question, is that as well as Bill 101, one of the strong components of both of those documents is the input of the stakeholder, and it has never been the case of the multi-year plan, no matter which government was involved with it. It's a concern that when I see this on the piece of paper about Bill 101 and the stakeholders are to be totally and absolutely and completely involved in it, then I'm really concerned that it's going to be a similar kind of thing as we've experienced with the multi-year plan.
Mr Hope: So do you think then there's a possibility you're going to be missed on the multi-year plan and missed in the long-term care and you've fallen through this giant-sized crack, now sitting there and saying, "Oh my God, what happened?"
Ms Morris: Yes.
Mr Hope: Because when you raise your comments about the correctional institutions -- and I can only assure you through my own belief -- I've had great times out there in the Southwestern Regional Centre, and I would never want to see any of those individuals, who I cared about for years even before being elected member, being at the hands of the correctional institutions. I understand where your fear comes in -- will they be missed in this overall strategic plan that's going on? -- and I think what we as a government have to do is involve the parents and the family auxiliaries more in the process about their child -- because you indicated a lot of them are older now -- being more heavily involved in the multi-year plan and heavily involved in making sure that when the long-term care discussion paper comes out in March that they're an active part of that whole process so that we can close the gaps.
I know where your fear lies. You've been through a process, a multi-year plan, and everybody missed the consumers' perspective or the stakeholders' perspective, and you don't want to have the same thing happen. But I can only assure you that I know, inasmuch as I'm still the parliamentary assistant over at the Ministry of Community and Social Services, I'm going to make sure that the institutions are not the corrections institutions, because I clearly understand your story. When I heard your story, it reminded me of John when he was talking about the first time he took his son into the Southwestern Regional Centre, and that story that you indicated to me was the labelling, I guess, that happened 10 or 20 years ago of those facilities. They were much different from what they are today. There's a whole different atmosphere in there.
Ms Morris: I think, as a parent and as a sibling and as the daughter of a family that's been involved for a long time with developmentally disabled people, the other thing that I really fear and have experienced is the kind of burnout and depletion. These aren't normal families, and the sooner the family that's involved recognizes that they're not normal any more and you don't fit into those normal kinds of molds -- there's only a certain amount of energy that people like myself or members of any of these associations can expend for the protection of their loved ones and the people they care about; their friends, even, if they're not relatives.
Mr Hope: But you know there are advocates on both sides.
Ms Morris: I realize that.
Mr Hope: The family auxiliaries are saying, "They're comfortable in the facilities," and then you have the advocates on the outside, Community Living, saying, "They're better off served in the community."
Ms Morris: You know, something that just popped into my mind is the non-smoker's rights kind of thing. Do you have to be forced to breath my smoke just because you have your set of beliefs about smoke?
Mr Gilles Bisson (Cochrane South): Good point.
Mr Hope: I'm a smoker.
Mrs O'Neill: That's a bad example.
Ms Morris: No, I think it's a very good one. That's why I chose it. Because one kind of service model fits the needs of one individual, it doesn't answer the need of others. Should they be denied their right to the appropriate kind of care model that fits them because it's the trendy, philosophical kind of thing that's required?
In my submission I'm sure you got the feeling that I did not always love, and I still don't love, Rideau Regional Centre, but I think it would be a crime to close that institution. As I've said before to officials of the Ministry of Community and Social Services, it's like somebody expropriating my brother's home. He's lived there for 39 years.
Mr Hope: But the intent of all centres is to actively prepare people for the community, and you're saying, if they go through that process and they're not actively prepared to accept a community, then don't force them out to the community, if I understand you correctly.
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Ms Morris: I know how comfortable I feel here tonight and I have lots of faculties and I feel quite a bit, intellectually anyway, as if I'm with my peers. I adapt to change quite nicely, thank you very much. I know, in my experience with these people who live at Rideau Regional, that change is not an easy kind of thing.
Mrs Bradley: It's devastating.
Ms Morris: It's devastating to see the effects that have happened on some people. We can go into details about people becoming stones after years and years of work for small amounts of progress, and some simple change just throws things right off.
The concern I have when we abolish the option for congregate care is that one of the problems is the high staff turnover rate. It's incredible. You know, it's also in the document that I was reading before I addressed this committee, the concern about the preponderance of women in low-paying jobs being the care givers in long-term care facilities in the community. My concern is not only that, but also I want to see continuity, and that's not happening in our region as far as community living options are concerned. The staff turnover rate is astronomical. The burnout rate is incredible.
Mr Hope: Just in closing, I understand what you're saying because, being the parliamentary assistant to the Minister of Community and Social services, I know at the Southwestern Regional Centre, which really touched me, there was a gentleman there who came up to me and said, "Randy, tell me I don't have to leave." You know, I didn't have an answer for him.
Ms Morris: We live in a world where there are no absolutes.
Mr Hope: But I clearly understand your role. Thank you for praising the Southwestern Regional Centre.
Ms Morris: Congratulations if you had any part in its success.
The Chair: In ending this part of the hearing, perhaps I would be permitted a few personal comments as well, having been the Minister of Community and Social Services and having visited your centre several years ago and having met on a number of occasions with representatives of the parents who were there.
I think what I want to do is to tell you, first of all, how important it is that you and the other groups come forward and talk, because I think, as Randy Hope has noted, there are people in different places in terms of what is the best thing to do. In a sense, particularly for those of us who have not had the specific life experience that you have had -- and you, as a daughter, as a sister, as a mother, see that in a way that those of us who have not had that experience can understand intellectually but can never understand in terms of the whole gamut of emotions that at times you must go through.
But I think as we go forward and try to develop both within the community and in other ways -- congregate, however they're shaped -- we're on a voyage and we're all learning. Each year I think we learn more about what we can do, about we can't do, about choice, about how we try to work with parents around what they believe to be the best thing, as well as to work with others who may choose other options.
In your presentation tonight -- I think of other colleagues of yours before this committee -- there's no question that, as members, I think we are very much aware of the dilemma that you have posed and how we then bring together both the long-term care development and the multi-year plan and work those together in a way that in fact will provide both choice and services that are required.
So I would, on behalf of the committee, like to thank both of you for coming, for your written presentation, but perhaps most importantly, for your own life experience and your own personal observations.
Ms Morris: I would like to simply point out that a very critical part of the written presentation falls on the very end of the presentation. It's a cost analysis of the per diem of some of the functional institutions versus -- I think that's very interesting information that should be considered.
The Chair: And we thank you for that. Again, thank you both for coming tonight.
GLEBE CENTRE INC
The Chair: I would then like to call our second presenter, the representatives from the Glebe Centre, if you would be good enough to come forward. If we need another chair, I'm sure the clerk will be able to provide a chair, or two perhaps. Take your time. We can probably move a mike into a somewhat --
Mrs Colleen Henderson: It's all right, we can share that.
The Chair: Well, we've got extra mikes, so let's make use of them. We've lots of time, so we'll get ourselves organized first.
May I first of all, on behalf of the committee, welcome all of you here. We are very pleased that you were able to come, and if you would be good enough to introduce yourselves both for the committee and for Hansard, then please go ahead with your presentation.
Mrs Henderson: I'm Colleen Henderson, president of the Glebe Centre corporation and chairman of the board of directors.
The corporation owns and operates a 195-bed non-profit seniors residence at 900 Bank Street, and the Abbotsford House seniors drop-in and outreach centre at the same address.
I would like to introduce the directors of the corporation here tonight who will be assisting me by speaking to specific sections of the draft legislation under discussion. Mrs Madeleine Honeyman will speak to concerns respecting consumer choices. Mr Doug McKeen will address the impact we feel this legislation will have on the role of volunteer boards. Rev George Strong will identify his concerns as chairman of the pastoral care committee with the responsibility for the spiritual and psychological wellbeing of our residents. Mr Foulkes, who is the vice-chair of our corporation, will express our concerns for the future of our organization, particularly in relation to the building of our proposed nursing home.
We also have in the audience, honourable members, several people who are vitally concerned with the life and the future of this organization. There is Mr Clarence Young, who is chairman of our residents' service committee, and is himself a resident of our organization. We have Mrs Rutland, a resident, and we are proud to have supporting us Mrs Betty Donnelly, the representative of our employees union, the Canadian Union of Public Employees. Last but by no means least, we also have in the audience two past chairmen of this organization, Mr Charlie Hurst and Mr Don Evans. All of us, including the members in the audience, would be happy to respond to questions at the end of our presentation.
We come here tonight, Mr Chairman, in the spirit of cooperation. Our board, management, staff, employees and volunteers consider themselves to be partners with the ministry in the provision of services to the seniors of this community.
Over the years, we have developed a positive working relationship with ministry officials. This has translated into quality care for our clients, but with due respect to the ministry, I would say there is a third factor to this partnership which has not been addressed by this bill, and that is the public at large.
I can say with some pride that the Glebe Centre has, over its long history, which stretches back over 100 years, been supported by the community in enormous and very significant ways. It is interesting to note that during this long history, we have never, ever had a deficit budget. The public has supported us wholeheartedly, and I believe that this stake, this shareholding of the public involvement in non-profit institutions, must be recognized by this legislation.
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We fully support the need for long-term care legislation and we wholeheartedly subscribe to the four driving principles, namely the privacy of the individual and the right to dignity, security and self-determination; the promotion of racial equity and respect for cultural diversity; the importance of the family and community; and equitable access to appropriate services. However, in our view, certain aspects of this legislation appear to work against reaching these objectives. We will try to explain these points as we go along. I will now hand the microphone over to Mrs Honeyman.
Mrs Madeleine Honeyman: Good evening. It's a pleasure to be here, I think. That remains to be seen, I suppose, but I do want to bring a particular concern of mine, and that is the concern that perhaps the NDP is drifting away from the philosophy that I always thought they held, and that was a real concern for the autonomy of the very old, of which I am one.
Naturally, I don't care for this drift away from giving the right of choice to the very old, because we're a group of people who are more diverse, less homogeneous than any other age group. This has been proved by research over many years and by this new book that's just been put out by the National Advisory Council on Aging.
As a consumer, my major concern is the proposed new admission criteria that are to be administered by placement services. It seems to give an enormous amount of power to these services. It appears that I will no longer have a choice, or even two or three choices, of a place that I may want to go but that I will be directed to a particular facility. There appears to be no appeal against this decision, either for me or for the facility that will be forced to receive me.
It seems that this legislation, Bill 101, takes into account very little the fact of whether a person is heavy care, light care or able to look after themselves, and because of its peculiar build, Glebe Centre is really not equipped to take heavy-care patients. It's a 12-storey building with places for 18 people on each floor. There's a great risk, we feel, for these people if they are in the upper floors. It was never meant to be a nursing home. It's a residential facility for people who are able to pretty well care for themselves with some supportive services.
At the moment, because of the changeover in homes for the aged to service people who are more incapable -- or sicker, if you like -- we have now 22 beds funded for extended care, but there are 70 people in the building who have certificates to say they should be getting this care. We are caring for them, certainly, but we're not getting the money for that.
Money also is a problem. If we are forced to take many more heavy-care people, where's the money coming from? We couldn't put them on floors without a nurses' station, and that would be an astronomical cost to put a nurses' station in for 18 people. The building would have to be adjusted, which would be another cost. One thing we're very pleased about is that the bill states that there's proposed capital funding for non-profit agencies, but we are concerned about how that could be accessed in the short term.
Glebe Centre, like many community agencies, has people who look forward to coming there when they can no longer stay at home. There are people who have been volunteers, have been directors like we have been, have worked in the place or have seen it grow and just plan that this is where they're going to spend the last days of their life.
In conjunction with this, I'm terribly concerned that I've never heard one word from any of the people I visit all the time in care facilities who know one thing about what the government is planning. None of the residents, who are the most concerned, seem ever to have received any information from you people, and that is certainly a concern.
In this new publication, the word "needs" and "choice" occur over and over again in the recommendations of the council on aging for the future of the very old. I see nothing in Bill 101 that gives any of this choice. I'm afraid to mention that word "choice," and you notice I'm not putting "sole" in front of it. I want to be very careful that I don't upset you.
The other thing is that moving into a known place is recognized as the best way to keep older people from suffering stress moving from home into a unfamiliar situation. Making choices about how to live out one's life is basic to the individual, basic to his sense of self-esteem and dignity.
I know how much money it's costing for our health care system, and we recognize that perhaps in the future we may have to pull the plug on some technological treatments for older people, but please don't pull the rug out from under our feet now. Thank you very much.
Mr Doug McKeen: As a fully accredited facility with a long-term positive reputation in our community, the Glebe Centre volunteer board of directors and the volunteer committee members are extremely concerned that the proposed legislation's tone and flavour appears to give an aura of mistrust. It is very evident when you go through it, and as a volunteer board member, I've taken a look at it. This questions our long-standing partnership that Glebe Centre's enjoyed with governments at all levels and of all parties and we're wondering what's wrong with that. We feel that we're highly committed and responsible stewards for our facility and our residents and are most uncomfortable with an intrusive inspection process that has been proposed. We find that it's going to be a major problem.
We've always been accountable to our clients, the residents of the Glebe Centre, and to our local community throughout our long history, and our history is there for anyone to look at. Our board of directors is composed of professionals from all walks of life who take their fiscal and administrative roles extremely seriously, and I think it's evident by the volunteers who have come out tonight to be present and with us tonight. We are curious as to what has happened to cause such a radical departure from proven past and current methods of accountability. Might this be an example of fixing something that isn't necessarily broken?
We also have serious questions about our continued ability to attract and retain high-quality board members when we see our responsibilities, particularly fiscal, increasing while our direct control over per diems and admission policies is greatly decreased. Our ability to generate much-needed revenues is seriously limited by the proposed policy of decreasing revenue paid by those residents who have the ability, the resources and the willingness to pay. Why?
When you consider all the restrictive controls that are being considered in this legislation, it would be most difficult to justify serving on such a board. When one adds the legal responsibilities imposed on board members, I for one would really have to consider my continuation as a board member.
Finally, community fund-raising by groups such as ours has become extremely and highly competitive and a costly undertaking, in many cases requiring the services of professionals to achieve the results that are needed. We wonder how we will continue to fulfil our fiscal obligations under such circumstances.
Fellow director David Foulkes will now take a peek into the future of the Glebe Centre.
Mrs Henderson: Can I perhaps correct that? It will be Reverend Strong who will speak.
Mr David Foulkes: I missed a meeting.
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Rev George Strong: The Glebe Centre Inc, a charitable home for the aged, has its 100-year-old origin as well as its present operation rooted in a religious and humanitarian motivation to fill the needs of elderly persons in the final years of their lives. In the nearly 20 years of my association with the Glebe Centre, I have observed this organization demonstrate its ability to practise such motivation on behalf of aged residents. It is from this experience and my own special interest in the spiritual care and mental health of persons who are 80 years of age and over that I look at the proposed act, and from my perspective as a pastoral perspective, I find a major problem.
I underscore two aspects of the proposed act which, from my experience, I believe can jeopardize the spiritual wellbeing and the mental health of perhaps many very elderly persons. These have to do with (a) one's entrance eligibility for residence and (b) one's personal decision-making as to what residence, that is to say, the right to reside and the right to decide: reside and decide.
Example 1: Let's say a couple has been married 50 or 60 years. She needs help. He is not able to carry the load. The proposed act would require these people to live separately. While one person is eligible for residence, the spouse is not eligible. Hence, they are required then to live separately. I find that most jeopardizing to the final years of life of these sorts of persons.
Example 2: Let's say a person has lived for a long number of years in a certain neighbourhood in a city and wishes to choose a charitable home in some proximity to those old, familiar streets and places. The new act would require that said person take what comes, not being able to choose -- that's what it says, not being able to choose -- the location one would want. You take what comes.
To conclude these remarks, I would say my experience is that the spiritual and mental health of elderly persons can be strengthened when they are able to make decisions for themselves: the right to reside with a non-eligible spouse and the right to decide the facility for one's residence. The new act eliminates personal decision-making as to where and with whom one may live.
Mr Foulkes: My name is David Foulkes and I'm the vice-chairman of the board. I'm asked to talk about the future, which incorporates the present leading up to the future.
The Glebe Centre has spent 10 years, $1 million and many thousands of years -- sorry, many thousand of hours of time to develop a proposal --
The Chair: It just feels like it.
Mr Foulkes: Some days it feels like it; you're right, sir -- to build a nursing home project on the adjacent property that's owned by Glebe Centre. You've heard people talk about the building and the tower we have now, which is residential. We've redone Abbotsford House, which was the original home, and that's the senior citizens' drop-in centre. So it was a natural progression for Glebe Centre to build a nursing home so it could cover the whole continuum of care.
We have the support of the government. We have the support of the district health council. We have the support of the council on aging. In fact we've had the support of every government that's been in office in Ontario in the last time.
This set of drawings is the approved drawings by the Ministry of Health. In 1986, the first person who approved the project was Murray Elston. The person who issued the licence is the honourable Elinor Caplan, who's sitting at the table this evening. I'm pleased to have her here. She issued us a licence for 70 beds back on May 6, 1988.
We agree with the long-term care and what is being done, and we've gone progressively along with this. As a matter of fact, we've got several pages of people we've talked to, representations we've made etc, and we've been approved by the Conservatives and licensed by the Liberals and encouraged by the NDP. In fact our past chairman wrote a letter, seven of them, to the Premier and the Premier, Mr Rae, has written a letter back to us saying that they want to help us and please go ahead.
The federal government, under the Central Mortgage and Housing Corp, must ensure our mortgage as a charitable corporation. This gentleman, Mr Bennett, has said: "Yes, we'd be happy to do it, but you fellows have a problem. You can't make the mortgage payments."
When we look at the per diem rate that's proposed for nursing homes, the proposed funding would appear to us to be a cost of about $38,000 per bed. According to our figures research and the assayers on our drawing on this approved building for 112 beds, the cost of those beds is just twice as much.
The only way to do that would be to cut down some of the other facilities. In there is a 46-bed Alzheimer unit, which is something we desperately need. There are people currently in the Riverside Hospital, the Ottawa Civic Hospital and other hospitals that need this kind of care.
It's a question, as you know, of you've got a closed amount of money and it's redistribution of those funds, so we're here trying to get you to help us redistribute some of those funds and put up this nursing home. We've looked at a lot of these ways of doing it.
We also have to tell you that we know the Ottawa Centre Nursing Home is closing and the community is losing 100 beds.
We were invited by the district health council to go to a meeting with everyone else who has licensed beds. We have a list of all the people who have licensed beds.
We said we'd take the leadership role. We convened a meeting just recently in Glebe Centre. We had all these people here. We're the only people with land, we're the only people with the money, we're the only people with the approved drawings and we're the only people who can proceed. In this $8-million building, there are a lot of construction jobs, the interest rates are right, everything is ready to go except one small thing called catch-22.
We've gone out to the community; we've raised $1 million. The $1 million is in the fire safety elevator that we've built, and Community and Social Services helped us build that elevator under cost-share. We renovated Abbotsford House -- we spent $1 million on it -- for that drop-in centre, and we take care of the Glebe and several other areas in the region. We've invested about $600,000 or $700,000 in these plans; we've had a tender; we have equity of $14.5 million on the property. You're looking at a whole bunch of frustrated people who want to build you a nursing home and we just need to get you to help us do it. If we can do some kind of cost-sharing for part of it, at the current rate we could assume and pay for a $4-million mortgage. We've raised $1 million. If there's cost-sharing in the legislation that can match us for $1 million or $2 million, we can put this place up.
I think that just about does it for me, so I'll turn it back to Colleen Henderson to conclude.
Mrs Henderson: In conclusion, we would like to distribute our written brief, which expands on the points we have made today. We would also like to express our thanks for the opportunity to appear before you. We wish you well in your deliberations and express the hope that the work of the task force will be expeditiously concluded. Agencies such as ours have been waiting anxiously for concrete direction from the ministry vis-à-vis funding and other matters. This bill must go forward quickly so we can make the decisions that are so badly needed and serve the community as we wish.
The Chair: Thank you very much, and thank you for the way in which you've made your presentation. I think we all have a sense of the Glebe Centre from having each of you speak to a particular point and, along with your brief, that will give us something to take away. We'll begin our questioning with Mr Jackson.
Mr Cameron Jackson (Burlington South): I listened very carefully to your presentation, and of course you began with the focus on Bill 101 and then completed with your frustration with not getting a shovel into the ground. I'm going to dwell on the latter, since this is new information for me and I'd like to learn a bit more, if I may.
In the two years plus that the new government has been in power, have you had opportunity to speak with the local NDP cabinet minister, who was the Minister of Health for a while and then became the Minister of Housing? It strikes me that she's in a very powerful, pivotal, informed, potentially helpful position.
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Interjection.
Mr Jackson: Sure, go ahead.
Mrs Henderson: The past chair, Mr Don Evans, who is here today, and a group of people have talked to the honourable member you mention in the last two years, but not very recently. In fact, we have had difficulty in even getting to first base, so to speak, our foot in the office, in recent years.
Mr Jackson: Well, I'm a little concerned here because we know that this government has been contracting -- not in the legal sense, but reducing -- the total number of available beds, whether it be chronic care hospital beds, nursing home beds, homes for the aged beds or whatever, and that we're currently developing legislation in that framework. That has to be very frustrating for you, knowing that all those trends and the lack of support is moving in that direction.
I hate to be specific, but I want to get a sense. You said there was another facility that was closing and this was due to financial reasons. Is this a nursing home? Where? Has the government approached you about their licence, or the transfer of that licence? I'd like, for the benefit of the committee, to get a little better handle on that.
Mr Foulkes: My understanding is the Ottawa Centre Nursing Home was placed in receivership and is under a court-appointed auditor. It's Coopers and Lybrand, I think. Have I got the right name?
Mr Jackson: Was that privately owned?
Mr Foulkes: It's a privately owned nursing home that is technically -- well, it's bankrupt. Their debt structure is such that the court-appointed administration, if I can, or liquidator, if that's the proper terminology, has asked and has tried to sell the licences. As a matter of fact, what they tried to do was move the licences from Ottawa to Toronto or some other area. The district health council contacted people and the district health council objected and blocked the sale. Then they tried to transfer the beds, I believe, to Hawkesbury. The district health council went in again and blocked the sale because Ottawa is already underbedded by the statistics and will become further underbedded.
Mr Jackson: Are they moving the residents slowly out of the facility or not?
Mr Foulkes: I can't answer that.
Mrs Henderson: I can. Some of the residents have already been moved, and one of them is actually here tonight, having moved to the Glebe Centre.
Mr Foulkes: But not from the Ottawa Centre.
Mrs Henderson: I stand corrected on that.
Mr Jackson: It would appear then that the government is prepared to allow this licence to lapse or to fall, that it will just be returned to the government.
Mr McKeen: At this moment it's still an asset of the bankrupt corporation.
Mr Jackson: But the receivers have put a value on it.
Mr McKeen: Yes, they have.
Mr Jackson: I've had experience in my own community with Ms Caplan, who isn't in the same political party as myself, when she was the minister, and the future horizon for these facilities when they're about to fall is not positive, because the government's not prepared to move in and begin operating them. That's a clear decision of the previous government and of this government, so there is a high risk that these licensed beds will be lost and that the licence will just simply be returned because the receiver is now losing money at a great rate.
I'll yield to the next line of questioning. I appreciate very much your point about the lack of information for seniors generally, that the government's moving forward with a portion of long-term care reform without scoping out the entire horizon and filling in the picture for seniors. We're getting very little information out as to how this is being done. This is only a small part of long-term care reform and it's out of step with the other two pieces. Thank you for your input.
Mrs Honeyman: I just don't want to think you're doing that because we're old and we don't know what's going on.
Mr Jackson: Well, I'm not a member of the government. I wouldn't have done long-term care reform in the fashion it's being done, but they're the government of the day and they're to be held accountable for the manner in which they wish the public to understand it or to accept it or to fall for it.
The Chair: Thank you. Mr Bisson.
Mr Bisson: I'll be very short, if that's all right.
The Chair: With the pressures of time, we have time for one, and the parliamentary assistant will have some things. You may have the normal rotation, but either one, it's up to you to determine.
Mr Hope: It doesn't matter if you're quick.
Mr Bisson: Just a couple of things. One of the things -- I've forgotten your name. Sorry, I didn't get a chance --
Mrs Honeyman: Honeyman.
Mr Bisson: Mrs Honeyman. Thank you. One of the things you had raised was the question around the information being distributed around to seniors in regard to what Bill 101 is all about and what the implications are and an opportunity for seniors to have input, something that is probably not the first time we've heard it, not so much from seniors, but we've heard it actually from associations. As much as the committee has tried to be able to get the information out to people in order to be able to comment and as much as the ministry has tried through various associations and through different mechanisms that are in place to get the information out, it's fairly apparent that no matter how hard you try, you always miss somebody.
I'm just wondering, how would you see a mechanism working in regard to making sure that the people in the end, who are the end users, have an opportunity for comment, if you have any suggestions?
Mrs Honeyman: You're speaking about the fact that I suggested that people in care facilities didn't hear this.
Mr Bisson: Exactly.
Mrs Honeyman: Now this doesn't apply to Glebe Centre, because our organization really gets out to the people in the home and tells them what's going on, as much as we can tell them, because there were some things that were not very clear. I'm well acquainted with a lot of other homes for the aged and other nursing homes around the city, and the ones that don't have a good working group inside, a residents' council for instance, never seem to hear.
I wonder if the heads of the homes for the aged, the executive directors in nursing homes, for instance, get a clearly written thing to say, "This is what's going to happen and it's going to cost them $10 more a month" or "$10 less a month" or something like that. Does something like that go out to the heads of all these organizations so they can actually get these people together and say, "This is what's going to happen"? Because what I hear from the people is, "We're terribly scared we're not going to be able to afford to stay here any longer because it's going to do such and such." I can't even truly clarify that for them.
Mr Bisson: That's in the vein of why I've asked the question, because like all other members who are sitting here, we have an opportunity to go into various homes for the aged, municipal homes, for-profit and non-profit, various types within our riding, and it's fairly apparent that often the seniors are not as well informed in regard to some of the things that would maybe affect them. I just wanted to raise that, because if we don't find a way of being able to get the information out, a lot can be misconstrued about what's being done and some of the things that you raised.
I think the parliamentary assistant wanted to respond to them, but I just wanted to say, one of the things you raised was a question of choice, and I think you need to understand -- and I'm not going to dwell too long on it -- is the question of choice in regard to having the ability to say, "I don't want to be able to go in that particular home," is a choice that you will still have under the legislation. What long-term care is about is making sure that there is a multitude of options open in how we care for seniors and how we care for people as time goes by, not just in an institutional setting but also within a setting at home. I'll leave that to the parliamentary assistant. I'll stop at that point because that's basically my question.
The Chair: Ms Caplan. I'm sorry. Did you wish to comment?
Rev Mr Strong: I just wish to ask where that point is in the act.
Mrs Caplan: I can address that.
The Chair: We'll come and deal with that, but I want to go first to Ms Caplan and we'll end with -- I'm sorry?
Mr Foulkes: All I wanted to comment to the gentleman was that I used to work for the income security programs branch, better known as the old age pension. Every month we sent out information, and I know if the province of Ontario asked the federal government to put something in the old age cheques that are mailed within Ontario, you could start giving small snippets of information. I wouldn't try to give somebody a whole lot, but often members of the family will be opening this up, depositing the cheque, and that does give you a mechanism to in fact get something into these people's hands.
Mr Bisson: That's why I raise it, because we do need to find a way to get people information so that they can look at these issues and say, "Listen, this is how I feel about them; this is my view."
Mrs Caplan: As the past, past, past, past Minister of Health, I am very familiar with your project and your centre and also with the development of long-term care and how much it has changed in the last two years, and I share some of your frustration and a whole lot of other frustration. But we do have an opportunity at this committee to turn nice words into protection in the law.
So in the time that I have, which isn't too much today, I'd like to ask your advice on some proposals for amendments that might deal with the issue of choice and tone and flexibility, and we've heard it over and over again as we've travelled the province.
The first would be a statement of principles. You referred to the principles that the discussion paper was drafted on. We actually had a statement of principles suggested by a placement coordination service; I believe it was in London. I read it into the record. I don't have time to do it again. We can send you a copy, but it seemed to me to embody those principles that you've mentioned.
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Would you like to see an amendment which included a statement of principles that would guide both the placement coordination service and the -- what are they calling it now? The single access organization was ours; yours is the --
Mrs O'Neill: Multiservice agency.
Mrs Caplan: -- multiservice agency, as well as embody for any of those interpretations of this law the statement of principles to guide the legislation?
Mrs Honeyman: At least it would prove that there was a choice still there. It's not much of a choice if you have to say, "No, I'm not going to that awful place because it's 20, 50 miles from my home." That is not a choice, in my mind.
Mrs Caplan: What this particular statement of principles would do is say that all of the decision-makers within this bill would take into consideration the multicultural, the linguistic, the social needs of those people who were applying for service under this legislation. That would guide the decisions, but I think it has to be stronger.
Another amendment that I hope the government will bring forward, but if they don't, I hope they will accept if it's brought forward by other members of this committee and the opposition parties, would be the right of refusal by an institution on the basis that it could not provide appropriate care. You would support that kind of amendment?
Mrs Honeyman: Absolutely.
Mrs Caplan: I believe, and I want to ask your advice, that that amendment should also be subject to appeal by the client. So if there was an individual who said, "I want to to go to the Glebe," and the placement coordinator said, "Yes, we think you should go there," and the Glebe said, "We don't think we can provide appropriate care," that client should be able to appeal your refusal to admit.
Mrs Henderson: We would be very happy with that sort of proposal, but I think more than just statements in principle, this must be embodied in the act in a very clear, concise and explicit way.
Mrs Caplan: Those are two concepts. The first that I discussed with you was the statement of principle. The second was a specific amendment that would allow the right to refuse to the institution and that would be the right for an individual to appeal, clearly stated within a time line, the decision of a placement coordinator, coordination service. That would be a third amendment. How do you feel about that?
Mrs Honeyman: I guess it starts a little bit before that. If the criteria are laid down by the province, whatever group does this, and those criteria are handed to the placement service or whatever it's going to be called, how much is it going to be held to those criteria and not have any flexibility itself? It's flexibility that really needs to go in there between the government and the placement.
Mrs Caplan: It's my view -- and again, I'm not a lawyer; I'm a lawmaker, as a legislator -- but that's where I think the statement of principles might help, because the statement of principles would give the flexibility to a placement coordination of the things that it had to take into consideration while determining an appropriate placement. If you had the right of appeal, Bill 10, do you think that might give greater flexibility and greater choice to the legislation? Do you follow the proposal?
You don't have to answer today, but if you'd think about it --
Mr Foulkes: We'll answer today.
Mrs Honeyman: Yes, I'd be happy with that.
Mr Foulkes: Yes.
Mr McKeen: It certainly would, your statement of principles, and I guess the legal thing would be the question of whether that provided a loophole and whether that just provided the organization with too many discretionary powers. I think that would probably be your hardest sell. I think that would be one that would have to be addressed. But we've outlined, by example, real conditions that are out there, and I'm sure that any one of your members at the time of decision-making to go into a home would like the same options that have been presented to you today.
Mrs Caplan: Now the next --
The Chair: Ms Caplan, please put another one, but if you could, bring it to a close.
Mrs Caplan: Okay. The last was on the tone. You've said that you're an accredited facility. I'm assuming that you have a residents' council and that you have a quality management program in place. If instead of the intrusionary powers and the negative tone there was an amendment that said that provided you had a residents' council that was active, that could be judged on the basis of its outcome and participation, provided that you had in place a quality management program, and if you had achieved accreditation, would you be comfortable then that there was sufficient accountability that you could be excluded from the inspection powers of this legislation? Would you feel that would be a good balance?
Mrs Henderson: Yes, I believe that would be very acceptable to us.
Mr McKeen: And I guess it has to go back and ask the question as long as you would be acceptable, because you're the one who's been proposing to impose all these new --
Mrs Caplan: Not me.
Mr McKeen: Right. The royal you.
We're saying that if we haven't done our job properly, we've been answering for over 100 years directly to our residents and directly to the immediate community, and we say: "Hey, we really feel that we've done a good job. We have our records to back that up. We've been completely open. We do an annual audit, as required. It's available to anybody who asks for it. Our meetings are open to the public," etc. We're saying, "What's wrong?"
The Chair: Thank you. Sorry.
Rev Mr Strong: I was just saying I think we would be pleased in that statement of principle to have a word about non-eligible spouses, and spouse to include, say, a brother or sister, that sort of thing, but a non-eligible person who wants to live together in the same residence.
The Chair: Thank you. I'd now like to ask the parliamentary assistant to comment and I believe he has some questions of his own. You'll have an opportunity to go back and forth.
Mr Wessenger: Thank you very much for your presentation. I'll start with a question before I address some of your concerns. I understand you have a placement coordination service already in Ottawa. From your experience, is it working well?
Mrs Henderson: Yes, we've been very satisfied with it.
Mr Wessenger: My understanding is that the principles on which the placement coordination has been working will continue to be so in the future.
I might just sort of explain that certainly we are as concerned as you about the whole question of consumer choice. I think when you look at the whole question of consumer choice, in this bill we're only looking at the institutional sector, but we have to look at the other choices for people. For instance, the community sector obviously has to be a real choice for someone who elects to receive his or her care in the community and there have to be such choices as supportive housing, which I think are a very important part of the whole continuum of care, as well as the long-term care facility.
With respect to the role of the placement coordination, the whole principle on which that is based is, first of all, to explore with the client what choices there are available for his or her situation, as I said, both within the community and with supportive housing and then the various institutions. The client will make the choice of what facilities he wants to be on the waiting list for and the placement coordinator will determine his eligibility. Assuming their eligibility, they'll go on the waiting list. The priority of admission will of course be determined by the placement coordination in the sense that if there's a very high need and the facility is suitable for that person, then that person would be pushed up the list. You can well understand that the need is as important an element as choice. You have to give priority to those who have the greatest needs, obviously.
The legislation does already provide a right of refusal in it. The grounds are to set out by regulation, but the grounds are going to deal with the aspect of whether the facility is able to service the needs of the client.
I also note your concern about the aspect that perhaps you think only personal care and the nursing needs are being taken into account. The new manual is being drafted, or has been drafted, which will also indicate the need to take social considerations into account.
I don't know whether I've missed anything here. If I have, I'll ask ministry staff to pick up anything I've missed.
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Mr Quirt: No, I can't think of anything.
Mr Wessenger: Okay, fine. Thank you.
Mrs Henderson: Sir, the comments you made just did not come through in the draft legislation. In fact, I have to say very clearly that we deem that document to be almost punitive. You know, the tone was, "Tut-tut, you're not doing a good job, so we are going to show you how to do it," and frankly we were quite resentful. It would be very helpful and some comfort to us if at the time of tabling this bill we had your regulations tabled as well to give us some comfort that what you are saying will indeed take place.
Mr Wessenger: Thank you.
The Chair: We could, I'm sure, spend the rest of the evening with you, and I apologize that one of the heavy duties of the Chair is at some point to bring a close to the discussions. But I do want to thank you all again on behalf of the committee, as I said at the beginning, for the manner of your presentation. I think you've covered a great number of issues. I recognize we weren't able to discuss all of them, but we have your brief and we'll be able to follow up with those. Again, thank you very much for coming before the committee and I know we would want to wish you all the very best in the successful completion of those papers that are on your desk there.
Mr McKeen: Extreme déjà vu here. We've heard that before.
The Chair: Well, sometimes things need to be repeated and repeated and then they happen. But thank you again for coming.
Mrs Henderson: And I thank you on behalf of my group.
CANADIAN UNION OF PUBLIC EMPLOYEES, OTTAWA-CARLETON DISTRICT COUNCIL
The Chair: I would like then to call upon our next presenter, the representatives from the Canadian Union of Public Employees, Ottawa-Carleton district, if you would be good enough to come forward. Perhaps we can replenish some glasses there if you would like some water. We'll move those old glasses out of the way. I want to thank you for coming before the committee this evening. If first of all you would just identify yourselves to the members of the committee and for Hansard, then please go forward. Although we are a bit late, we will still have the full half-hour for presentation and questions.
Ms Betty Sommers: My name is Betty Sommers.
Ms Mary Catherine McCarthy: And I'm Mary Catherine McCarthy.
The Chair: I'm sorry, just again for the record, you're with the Canadian Union of Public Employees. Are you the president or executive director or is there any title?
Ms McCarthy: I'm the president of the Ottawa-Carleton CUPE District Council.
Ms Sommers: And I'm president of CUPE Local 870, representing workers at the Perley Hospital.
The Chair: Fine. Thank you. Please go ahead.
Ms Sommers: Thank you for the opportunity to present here today. My name is Betty Sommers and I'm a hospital worker and have been for the last 15 years. Previous to that I have worked at nursing homes and homes for the aged. I represent the Ottawa-Carleton CUPE District Council, which represents many of the CUPE locals here in Ottawa. We wish to address not only the deficiencies of Bill 101 but also to speak to the larger context of which this bill is a part, and that is the government's attempt to massively restructure long-term care in this province.
This restructuring, which the government refers to as reform, has been taking place bit by bit and piece by piece. Many organizations, including our own, have objected to this incomprehensible approach, which refuses to acknowledge the interconnection of all parts of the health care system. Alter one part and another part is affected. Each is vitally linked to the other. Close down chronic care beds and there is a greater strain put on nursing homes, homes for the aged and community-based services. Cut acute care hospital jobs, budgets and services and an array of home care services and supports become absolutely essential. The reality is that long-term care is a comprehensive system. Yet here we are once again, examining yet another part of this massive overhaul, Bill 101, in isolation.
We believe the government has chosen this piece-by-piece approach because it makes it harder for the public to see the full impact of the restructuring taking place. CUPE has extensive experience dealing with health care policy and we can say, with regret, that in the end, when all bits and pieces are woven together and all the legislation and initiatives are in place, long-term care will have been fundamentally and irreparably altered in Ontario. In a few years, what we will call long-term care will represent a radical departure from what we have now. It will most certainly not be a change for the better but will be a system that offers a much lower quality of care and far less services and security to patients and their families.
Fundamental shift: The government is reforming and reshaping the system of long-term care in a way that will not serve the needs of present and future generations in Ontario.
There are three principles that shape the policy directions in health care delivery and that mark a shift in ideology and approach. First is the idea that there is something obviously wrong with publicly run hospitals and other public institutions and that the quality of care is inevitably better when it is provided in something called community-based services, or when it is given in a patient's home. The second and related idea is that individuals must bear significantly more of the burden of caring for themselves and their sick relatives. The third principle is that the private sector can provide care better and more efficiently than public or non-profit agencies can.
Looked at one at a time, these premises don't stand up to experience or common sense. When they are combined, unchallenged, in a government policy, they are the worst possible news for our health care system.
Bill 101 formalizes these new principles with respect to provision of service and basic levels of care that consumers can expect. The bill sends an unmistakable message that consumes had better not look to the province for any meaningful enforcement of standards, that they have only themselves to rely on. It also exposes a government that has given up on the idea of non-profit public administration of health care.
Consumers on their own: The bill does require the posting of service agreements, but what happens if the home does not meet certain standards or if there is an infraction? There is no protection for whistle-blowers and nothing that empowers residents, allowing them to act on their own behalf and in their own interests. It is the residents and employees who monitor the agreement better than anyone else. It is absolutely essential that union members and residents accompany inspection tours and that they be legally protected from owner reprisals for their cooperation. Inspections are conducted infrequently and the ministry has a bad track record in policing infractions. We are therefore convinced that these measures would go a long way to ensuring better conditions in the long-term care homes.
Residents in nursing homes and homes for the aged have long called for greater influence in the design and implementation of the services provided in their institutions. We believe it is very important to make these facilities more accountable to the government, the residents and the people they serve.
Giving up on non-profit care versus for-profit care inferior: Between 1976 and 1989, in Ontario the percentage of private beds increased from 47% to 54%, making it the largest supporter of the private sector in the delivery of extended health services.
Also, the Ministry of Health has assured the for-profit nursing home industry that funding for homes for the aged and nursing homes will be equalized in 1993.
We are very much opposed to this funding plan. It will further entrench and enrich commercial nursing homes at the expense of homes for the aged. The only way to provide decent nursing homes is to remove the profit motive from their operations. The purpose of a nursing home is to provide care to ill and infirm people, not to make their owners wealthy.
We know of a nursing home in this region where funding has been provided for a specific service but the nursing home does not provide the service. It has been brought to the attention of the ministry but nothing has been done.
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It also means the loss of 1,500 jobs this year in Ontario in homes for the aged. This is appalling. We do not think that dedicated and experienced workers should be treated like this, especially since a real need still exists for their services.
The hospital training and adjustment program, known as HTAP, must be expanded to include all workers in the system. Additional and sufficient money to fund retraining programs must be job guarantees for workers who are being laid off as a result of this government initiative.
Through long and hard experiences we have found that the quality of care in for-profit nursing homes is generally inferior, as are workers' wages, benefits and working conditions. We also believe that the private nursing home industry in Ontario has not been adequately monitored or properly held accountable for the considerable revenues it obtains from residents and the provincial government.
In 1988, the Ministry of Health residential services branch changed its system of inspection from one of enforcement to one of consultation. The net effect has been to allow private nursing homes to remain largely unaccountable for the services they provide, except during the pre-announced annual inspections conducted by the ministry.
Inspection system seriously flawed: In 1990, the Provincial Auditor's report pointed out the flaws in the current inspection and compliance system. Here are some of the findings: Over 40% of the homes did not receive any visits in addition to the annual licence renewal; long advance notice of licence renewal reviews could allow substandard homes to temporarily comply with requirements; it has been our experience with the compliance system that it fails as an approach. For example, in 1984, 20 homes were charged, 497 charges laid and 117 convictions resulted. In 1989, a year after the ministry changed its system of inspection, zero homes were charged, zero charges laid and no convictions. This situation cannot be allowed to continue. If the regulations are not tough enough, then they must be toughened up and they must be enforced.
Wrong assessment method: Bill 101 calls for residents of nursing homes and homes for the aged to be assessed and a plan of care developed to meet the requirements. We have some serious concerns if the assessment tool to be used is the Alberta classification system.
Residents are classified, at most quarterly, to determine the case mix, whereupon the funding of the facility is determined. We know of one nursing home here in Ottawa-Carleton that under the Alberta classification system was initially told its funding would be increased, or at least stay status quo, but now the employees have been told that the funding will be decreased.
Our concern is that patient assessments will be conducted too infrequently to address the real staffing needs required by patients. This will have a dramatic impact on the workloads of health care workers and on the level of care residents can expect.
Staff who work regularly with these residents must have input into the patient assessments. Assessments should be done on an as-needed basis when the medical condition of the residents change or deteriorate or, at a minimum, on a more regular basis, and the case mix index system must be revised to reflect actual staffing case loads.
Enormous impact and care slashed: Our population is growing and aging. Bill 101 and the government initiative on long-term care and acute and chronic care will have a huge impact not only on today's senior population but on all generations. Nearly one million Ontario residents are between the ages of 55 and 64 and there are over one million people between the ages of 45 and 54. This massive restructuring of long-term care that is taking place now has everything to do with the level of service, care and support they can expect to receive, but the shape of it is unmistakably and alarmingly flawed and regressive.
We don't have to wait long to see the real adverse impact of government policy on health care. At this time, hospital beds and services are already being cut and workers in the thousands are being laid off. In another few months, over 18 million paid hours will have been eliminated from the hospital system. We have been told that community-based services will fill the void, but we don't see many new ones being created to replace programs cut from hospitals.
As part of the long-term care reform, the government committed itself to transferring $37.6 million a year from provincial hospital budgets to community agencies to beef up home care. But where are these agencies and the equivalent services? The cutbacks that have taken place in our institutions are only viable in the reality of a comprehensive home care service, but it does not exist. Clearly, the language of reform the government and the bureaucracy has been using is simply a cover for budget slashing and cost cutting.
Cutbacks and rationing unnecessary: There is money available in the system, and there is waste throughout the system. CUPE has spelled out crucial areas where substantial savings could be realized. We have said over and over again that large sums of money could be brought back into the system through a change in the fee-for-service system of payment for doctors.
In our submission to the Public Hospitals Act, we suggested that the government look at the high salaries of hospital executives and pointed to the 67% growth in the number of administrators over an eight-year period. Meanwhile, the number of staff providing direct patient services is shrinking.
The existence and growth of the for-profit service providers and commercial operators is a loss for every one of us. Precious health dollars that could go into better services and more jobs are simply skimmed off the top in the form of profit for them and a loss for us.
The government has put a huge emphasis on community-based services. At present, many services provided through public health units and home care programs are contracted with private medical companies.
The rapid expansion of the private sector into home care causes us great concern. In 1978-79, the number of hours provided for Ontario residents was 82% non-profit and 18% commercial. In 1988, the ratios had shifted to 62% non-profit and 38% commercial. At our CUPE Ontario health care conference last September, the then Minister of Health Frances Lankin stated that the ratio is now closer to 50% and 50%. We now know that the increase in the commercial sector has been at the expense of the not-for-profit system.
The suggestions for cost-saving within the system has not been kept a secret from the government. CUPE has emphasized them again and again, but it seems that nobody is listening to us. It is beyond our comprehension that instead of seriously looking at alternative measures to cut costs, the government opts to slash and burn its way through thousands of jobs and much-needed health services.
Restructuring of the health care system must be slowed: We must slow down the pace of these profound changes to our overall health care system, and especially the long-term care portion of it. Community services are not in place, yet we are cutting chronic and acute care beds and services. When examining Bill 101, we just see more of the same kind of approach that is happening in the rest of the health care system, more of the same rationing of service and care, more warehousing of the elderly and more nickel-and-dime care for the elderly.
All of us deserve better health care than this. It is, after all, our lives and health on the line. If we are to have real reform, reform that works for us and not against us, then we must have more space and time to tackle the really serious issues of health care. Also, the government needs more time and space to come up with a workable approach that can meet our health care needs in the years to come.
The Chair: Thank you very much for a full presentation and a number of issues that you've touched on. We'll begin our questioning with Ms Carter.
Ms Carter: As the Chairman says, there are a great many points there and I certainly can't take up all the ones that I would like to. I wonder if you can clarify something for me. You seem to be saying, early on in your brief -- I think it's on page 2 -- that it's not a good idea to have more of this kind of care provided in the community rather than in institutions. Then at the end of your brief you seem to be saying that the problem is that the alternatives in the community are not there, which obviously is a valid point, that if we're going to de-emphasize institutions, we have to beef up the community side of it, and certainly that is the intent, that this is going to happen, and I believe there's about $400 million being set aside for that.
But as you know, there's been a lot of public discussion. The government put out suggestions and there were enormous numbers of meetings, consultations and so on, and I think it was generally agreed that to emphasize the community side and to help people to stay in the community as long as possible was a good thing to be doing. So I just wondered if you can comment a little bit further on that.
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Ms McCarthy: I'll make a few comments on that. Our initial point was that there seems to be the assumption in health care restructuring that institutional care is somehow not the kind of care people want and that community care is sort of automatically better. We think in many cases community care may be the best care and also, at the same time, institutional care may be the best care for people. It just seems to be in the sort of language of progressive reform in health care that institution is bad, community is good, and we don't think it's that simple.
We believe that a shift to community care and progressive reform in health care is probably part of what may at one time have been a progressive vision of the government, but what we see and what our members tell us is that the quality of care in institutions is -- you know, people with shorter hospital stays and sending people home with an intravenous and one frail, elderly person being expected to care for another frail, elderly person, when people working in home care are saying that the people who are at home are sicker and sicker and they can barely cope with the service. We see progressive reform is really downsizing, cutbacks and a serious strain on our health care. We would like to be part of a progressive reform in health care, but we find we are trying to hang on to and our members are wanting us to try to protect the services more than ever.
Ms Carter: Obviously it's not a black and white situation. Of course, there's always going to be a role for institutions, but it's just a question of getting the balance so that people are in the ideal situation for them. Do I have any more time?
The Chair: You can have one more question.
Ms Carter: Okay. There is also this question of the profit versus the not-for-profit, and of course as far as the community side goes, home care and so on, we've been hearing from a lot of for-profit providers who really feel that we're trying to phase them out, so there are certainly different points of view on that.
As far as the institutions are concerned, I think the new funding scheme is going to be much fairer across the board, and of course for-profit institutions are only going to be able to make profit out of the actual provision of accommodation, not out of providing health services or programs and so on, so they're going to be very limited in that respect. But if we were to go to a much more publicly owned system, which would not be against my principles certainly, the problem would be, I think, finding the capital to take over all those businesses. I just wonder how you would solve that problem.
Ms McCarthy: If I could just comment on that briefly, I think it's important for the government to at least state in principle that the government has the intention to phase out health care for profit in all areas of health care. We know that can't be done with the signing of a document, but we know that there should be a commitment to that and there should be a process put in place for profit to be phased out of our health care system, because there shouldn't be profit. The stories that come to us from our members, who because of whistle-blowing and the jeopardy that people would put themselves in with their jobs, are incredible. For people who have worked in for-profit homes and then work in non-profit and publicly run institutions, the difference is amazing, and I would think that this government should be dedicated to phasing out and keeping in mind that Ontario has the highest percentage of for-profit. That's a shame, and this government should be phasing that out.
Mrs Fawcett: I thank you for coming and making your presentation. Maybe if I can just pick up on what Ms Carter was referring to on the profit versus the private way of providing services, we really do want to make sure that people have a good choice of services so they can be comfortable in their later years.
I have a hard time trying to understand just why there isn't room for both so the choice is there. Right now, I think certainly the public system is given the first go as far as someone availing himself or herself of service, and then if that particular service cannot be provided -- maybe there aren't enough, especially in rural Ontario and in some areas of our province. There just aren't enough care givers to go around. I'm talking about those being provided in the community. So the private companies have been able to pick up the slack.
I have met both public and private care givers, and both can do a good job. I have to look at page 4, and I know this is referring to nursing homes, but it's sort of in the same vein, and you say, "Through long and hard experiences, we have found that the quality of care in for-profit nursing homes is generally inferior". I've been in both kinds of nursing homes as an MPP, and I don't always find that. I wonder what proof you can give me that this quality of care is less because it's privately given.
Ms McCarthy: The proof is that there has been extensive research done by CUPE. We have research officers who talk to our members who work in both kinds of homes, and not to discount your experience or anything, but we have a lot of substantial research from our members, people who work in the homes, who can make a very real case for the care being inferior.
Our other point on this is that there may be private providers for certain kinds of services, and I don't think it would be the intention of the government to get rid of everyone. Our main point is that public dollars should not be going that way, that if there are scarce resources in health care and if health care is so expensive, one of the ways to save money in the system is to not give it to for-profit providers.
Mrs Fawcett: I've always thought that if there is a problem, then fix the problem; don't cut it out. I mean, when in doubt, cut it out. I just can't see why. If somebody isn't providing the care, then that's the problem you fix. If there is a nursing home that isn't up to standard, then all right, go in there and do something about the problem. But just to cut it out --
Ms McCarthy: Well, we've heard many reports about inspections and then recommendations not being followed through on and it being worse in for-profit nursing homes.
Mrs Fawcett: Could I just ask one little more? At the Golden Plough Lodge in my riding, which is the county home for the aged, I know the director there is very, very concerned and worried because the Ontario Nurses' Association is at binding arbitration. They know that precedent has been set at a 29% settlement and they figure that's what's going to happen here. So all of a sudden that has to be addressed, because, boy, that creates a big problem. CUPE is also at binding arbitration, and she is assuming that there would be a fairly decent settlement there, because I think they're asking for 8% now. Whether they'll get it or not I don't know. But these are the real problems.
Is this the reason for the cutbacks in staff and so on? Do you feel there are going to be further cutbacks maybe after some of these settlements? Do you also fear that you won't find those jobs in the community because we're not ready with the services in the community where you might be rehired? I'd just like your thoughts on that.
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Ms McCarthy: In my experience, not very many nurses who work in nursing homes are registered nurses. Usually they're RNAs and health care aides, so I don't think part of a budget would be dedicated to registered nurses.
Mrs Fawcett: I believe it depends on the level of care then, doesn't it?
Ms McCarthy: Yes, but anyway I just don't think there's a large population of registered nurses in nursing homes.
The other thing is, the level of wages of even unionized workers in nursing homes is very low and any wage adjustment that would bring them up to even the low end of poverty line wages would probably be a substantial increase for many of them because a lot of them are still between $9 and $13, $14 an hour. These are not highly paid workers, and it's very alarming for us in the labour movement to now think that those are the jobs we are having to protect and use as an example of a good job, because what's in the community if some nursing homes are cutting back? The jobs as a health care aide for some private home care agency are barely minimum wage or above. It is a very serious issue that the good jobs have a low level of remuneration and what's in the community so far, because it is largely unorganized and it's still largely private. Homemakers I think is one of the very few non-profit home care agencies in this region. The rest of them are private for-profit.
Mrs Fawcett: There's one thing I think we can both be worried about. The classification system we hope will address all these increases, because I think that's a real concern. There definitely will be more cutbacks.
Mr Jackson: I'd like to thank both deputants here. Your brief introduces me to some new statistics and some additional information. I can't necessarily agree with your thesis on the not-for-profit and the private. I do understand what you're saying and I understand where you're coming from. What's more important is not what I believe, and maybe it isn't even as important as what you believe, but the government of the day has clearly made the statement that for-profit nursing homes are not poor-quality care. The Minister of Health is on record -- that's an NDP Minister of Health -- as the NDP Minister of Community and Social Services has said that private day care is not inferior or lower-quality day care in this province. That is the attitude and the position of this government now, so I'm not going to dwell on that part of it because I think it's more of a debate and less of an impact in this legislation. The government's intentions are clear. At least that component of it will be supported by all three parties.
I do want to pursue the point you raised on page 4, which I think would be helpful to elevate my understandings a bit more. I can't help but be struck, Betty, by the fact that you represent workers at the Perley Hospital and that the government's currently working to reclassify the beds, the levels of care. From all my years in collective bargaining, that's going to change staffing, big time. Could you enlighten the committee as to how that -- tie that, because we're going to hear from the Perley tomorrow but I'm not so sure we're going to hear a representative of your union in that presentation.
Ms Sommers: I'm the representative.
Mr Jackson: Will you be in that presentation tomorrow?
Ms Sommers: No.
Mr Jackson: Good. Then for that specific reason, I want this to be our opportunity to listen to the workers at the Perley and maybe we could focus on that more specifically. That would help me, because tomorrow I think I'm going to get all of it from the administrators, who are walking on glass here, whereas you can not mince words and just lay it right out there for us. Could you enlighten us what you really mean by that, and that'll help me in my questioning tomorrow?
Ms Sommers: As for the Perley Hospital turning into a long-term care facility, that is true. The workers at the Perley Hospital have not had any input into this decision-making.
Mr Jackson: Negotiations.
Ms Sommers: Into these negotiations. We know there was supposed to be full collaboration between both unions and the institution. There was nothing done. Nothing was told to us. It was just under informal discussions with the previous president of my local and myself and the executive director. He let it out and said, "Yes, the board of directors passed it, but they didn't know what they were doing."
We have great concerns about this and we have contacted the Ministry of Health in Toronto to reopen these discussions so that there will be a full, open consultation process with both unions, ONA and CUPE, at the Perley. The executive director is aware of what our position is on that. We fully intend to follow that through.
Mr Jackson: The hospital training and adjustment program, including all workers in the system: Just tell us which ones are excluded and what impact it's -- I understand it's a top-down process.
Ms Sommers: Mary Catherine works for --
Mr Jackson: Maybe Mary could help me understand all of that.
Ms McCarthy: The Hospital Training and Adjustment Panel was set up to deal with layoffs from public hospitals. That's all those public hospitals under the Public Hospitals Act. So psychiatric facilities and nursing homes or other institutions or facilities in health care are not covered at this time. I understand there have been some discussions between the Ministry of Health and the Ministry of Labour about possibly expanding or not, but it was a special program set up by the Ministry of Health to help laid-off hospital workers into training and help them secure jobs in the community as the system was being restructured.
The Chair: Again, there are issues I'm sure we could continue to pursue, but we do want to thank you for coming before the committee for your presentation this evening.
ONTARIO PSYCHOLOGICAL ASSOCIATION, EASTERN REGION
The Chair: If I could then call Dr Irwin Pencer, if I've pronounced that properly. The critical changing of the water that a committee has. Dr Pencer, I want to thank you. I realize we are running a bit late, but we will certainly give you every attention. Also, if I can say to Ms Cluff, who is somewhere in the audience, don't despair; we will be getting to you shortly.
We want to welcome you to the committee. While obviously Hansard and members know your name, perhaps you'd just tell us a bit about who you are for the record and then please go forward with your presentation.
Dr Irwin Pencer: Sure. I'm very glad to have the opportunity to be here tonight. I'm a clinical psychologist and I'm representing the Ontario Psychological Association in the eastern region of Ontario. I'd like to apologize for not having a brief prepared. At the same time, I appreciate being offered the time to present tonight. I could provide one at a later date.
The major issue I'd like to address is accessibility to those in need of psychological services at the time of admission to a long-term care facility and afterwards. I'd like to just do a bit of a preamble, and that is to describe a little bit the services that psychologists can provide, although I understand that likely you're all at least to some extent familiar with this. At this point in time, if you look around the province, psychologists are not employed in any capacity that I'm aware of in a nursing home environment or in homes for the aged. There are very few psychologists actually employed in chronic care hospitals. The following is a bit of an outline of the kinds of services psychologists can provide. I've just categorized it according to different characteristics.
(1) Assessment: What that means is the provision of psychological test materials and, along with that, clinical assessment of individuals presenting difficulties in order to determine the presence and extent of cognitive impairment, depression or other psychological difficulties.
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As you may know, psychology is one of the few professions designated the right to diagnose mental health problems under the new Regulated Health Professions Act. Psychologists receive extensive training in psychological evaluation through their undergraduate and graduate courses, and particularly at the doctoral level, which is the entry point at this point in time for psychologists into the profession.
Second is treatment. Direct: for example, therapy for depression. Indirect: for example, developing behaviour management strategies for individuals with special needs, such as Alzheimer's patients who are suffering, wandering or in whom there has been evidence of aggressive behaviour for one reason or another. Another example: providing support and help to family members to help them understand the nature of their loved one's illness and also to help them develop a means of coping with this illness.
Keep in mind that along the way you might be aware of some overlap between psychology and other professions. I'm not here to compete with other professions, just to point out how psychology can contribute.
Consultation is third. For example, with nursing home staff or home for the aged staff with regard to behaviour problems of residents, psychologists can provide an alternative method of treatment which does not use medication. Psychologists tend generally to be wellness oriented, tend to try to look at the whole person in context and are dealing very much with quality of life issues.
Fourth is training: Training care givers in effective interventions.
Fifth, and last but not least, is research: Psychologists undergo training which involves both clinical -- that is, applied -- training as well as research training. So they come out as scientist practitioners and can be very much involved in evaluating programs and outcome research.
Keeping in mind the training skills of psychologists, I would like to address the following aspects of the bill:
(1) Special needs of residents with mental health problems need to be more directly addressed. Some 75% of Ontario residents of nursing homes and homes for the aged have some cognitive impairment; around 60% have been described has having some mental problems.
(2) Academic training and career experience of the placement coordinator position is not specified, nor is how admission criteria are established. These individuals will control the admissions procedures and in fact may go a long way in determining where a person will go and what kind of needs he or she has.
According to the bill, each resident in a nursing home or home for the aged must be assessed and a plan of care developed. What is the true meaning of that term "assessment"? We have to keep in mind that we cannot use that term in a casual sense, particularly from the point of view of psychologists.
Some recommendations:
Specify the need for psychological or psychologist involvement in the assessment and treatment of those in need. At the very least, for example, provide the opportunity and specify this for consultation with the placement coordinator.
Training of front-line staff: We all recognize that the services of the psychologist can be quite expensive, particularly on a private basis, so it might be well to consider the value of this service in an indirect fashion by providing the knowledge to the care givers. That knowledge can then be applied in a direct fashion with ongoing consultation and by providing assistance for care givers and for the psychologist to deal in a more direct way with problematic behavioural management issues.
Another recommendation: In view of the lack of government coverage for psychological services under OHIP, and notwithstanding coverage for services under selected private insurance companies, recognizing that there is a limit to this coverage, I recommend the government develop a cost-effective means for reimbursement for psychological services.
The Chair: As you're aware, while you didn't have the opportunity to present a typed-up brief, that of course is in Hansard, so that we have that. We thank you very much for coming forward, not only as an individual, but representing your colleagues here in the eastern region, and I think in particular for your recommendations. We'll begin the questioning with Ms Caplan.
Mrs Caplan: As a former minister, I'm very aware of the important role that psychologists play in the delivery of health services, and I'm particularly supportive of one of the roles that you played today, that of the possible future role that is envisioned in particularly the development of community mental health programming. I see many lost opportunities, as we've seen a remedicalization of the health system in the past two years, in my opinion.
I believe that this government has placed a relatively low priority on mental health services and I think there are many examples of what's happened to mental health services in the province in the last couple of years. One of the concerns that I have, as I listened to your presentation, is that you seem to have been excluded from the discussion and planning, not only of this legislation. We heard from your association in Toronto as well that the possible role for psychological services, not only as a part of Canadian mental health but long-term care in general, seems to have been overlooked or not considered. I just wanted to know if you knew of any consultation or participation of your professional association as these policies were developed.
Dr Pencer: Earlier on, I suppose it was last fall, into the new year, there were a series of consultative sessions that psychology took part in here in the Ottawa area that involved both attendance at the various focus groups in the Ottawa area as well as specific meetings planned with our regional manager. We were able to have a meeting with him -- I believe he's here tonight, or was here -- and discuss the concerns of psychologists. We certainly welcomed that and felt that it at least got on the record some of the concerns that we had.
Mrs Caplan: Did you see any of your recommendations, ideas or suggestions reflected in this legislation?
Dr Pencer: Not in a specific way, no.
Mrs Caplan: Are you aware or have you been informed of any plan to develop programs that would allow for reallocation to allow for an enhancement of psychological services as a part of long-term care?
Dr Pencer: No.
Mr Hope: If I understand through Elinor's questioning, what you're saying is you should be involved in the process of doing assessments. You were looking at the word "assessment" and saying, "Well, if you're going to assess an individual, you should have professional assessment," if I understand you correctly.
Dr Pencer: I think that goes without saying, that the assessments should be professional. In addition, they should be comprehensive, and that is, address the issues from a number of different points of view, not simply do an informal assessment or, for example, look at the Alberta classification model as a means of testing a person, but rather to look at it from a bit more of a sophisticated direction.
Mr Hope: What do we do with those individuals who are afraid of that assessment process, getting wrapped up in the medical model, for instance? I've heard the disabled community saying, "We don't want to be entangled in this medical model of long-term care." I'm just wondering how that would be perceived, to do assessments on individuals suffering disabilities under the changes in the Ministry of Community and Social Services Act.
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Dr Pencer: I would have to say this is the first time I've ever been referred to as being perceived as coming from the medical model.
Mr Jackson: You're not funded that way, that's for sure.
Dr Pencer: It's a very unusual characterization of psychological services. If you look at how psychologists are funded in a hospital environment and how often they deal with other so-called allied health professions and interact with medicine, it would become very clear that we aren't perceived as medically oriented.
But that was a comment. Your question, nevertheless, is a good one.
Mr Hope: Well, around the health, as soon as you're embraced in the hospital aspect you're considered to be part of the hospital model, and that's the way the client perceives it.
Dr Pencer: From the client. I would have to speak from experience, that is, the opportunity to see clients in a hospital setting for purposes of evaluation, and although certainly at the outset many patients, clients, are a bit upset or maybe worried about the interaction with psychologists for purposes of evaluation, there is a tendency -- and this is pretty general -- for clients to relax very soon after the involvement, with proper training in the sense of that psychologist as well as proper education of the client, so that they can relax and understand the purpose of the assessment.
The assessment is geared to trying to understand as well as possible the client and often can take quite a number of brief sessions, because an older adult individual often has difficulty sustaining attention for extended periods of time. So all these things are taken into account, and although I agree with you that initially it might be a difficulty, I think it's a question of understanding and education.
Mr Hope: So if I understand your presentation -- I guess I'm going to try to be as direct as I can -- in order for it to be a picture-perfect process then, you have to be in the picture.
Dr Pencer: I certainly think it's vital that psychology's in the picture, yes.
The Chair: Thank you very much, Dr Pencer. There are some of us who were also members of this same committee when it looked at the Health Disciplines Act, and when I hear the terms "medical model" and "social model," I think we all sort of come alive and remember the deep discussions over just what constituted what and what kinds of changes needed to be done. We thank you again for coming to the committee this evening and for the recommendations that you provided to the committee.
LESLEY CLUFF
The Chair: If I might then call Ms Lesley Cluff. Would you be good enough to come forward? This will be our last presentation of the evening, but in saying that, Ms Cluff, let me say that we will give you our full and undivided attention. I know you've been sitting here for some time, and we do thank you for coming before the committee. Your brief has been circulated. Please go ahead.
Mrs Lesley Cluff: I will throw in a little part of my presentation -- it wasn't meant to be a part of my presentation, but if I do seem a little bit tired, I have a splitting headache, and I'll tell you why. It's something that is not dealt with in the current system and isn't even touched here. The gentleman from the Glebe, I noticed, did comment, but I didn't hear too much about it.
Before dinner, I helped my mother-in-law pack. She's going in for private placement, which under this would not have been possible, in Toronto, where most of her family is. About now she's getting ready for bed and she's going to say good night to her husband, and this is the last time in the lives of either one of them that they will ever say good night to each other. In all likelihood, on Thursday at the nursing home, she will be assessed and promptly admitted. There will at least be family.
It's the lesser of many evils, because it's almost virtually impossible to put a couple who have been married 50 years together in the same nursing home or the same facility, without many months' separation, without distance between them, unless their level of care is the same, unless you get lucky.
So I'm doing to my mother-in-law what to me is my worst nightmare between my husband and myself. I don't know how else to deal with it. I didn't want to get quite so emotional, but after 9:30 tomorrow morning, they'll never see each other again. There's nothing that accommodates couples.
We had managed to postpone this inevitable end by almost a year. When poorly supervised in their own home, with community care that was never adequately updated, without proper in-home supervision to realize how her health was deteriorating and therefore affecting his, we brought them into our home.
I commend Bill 101 because it does raise the standards generally, I hope, of all nursing homes, because the one that he was to go into direct from hospital was something out of a Charles Dickens novel. It was horrible. The only alternative there, which again would have separated them permanently, was to bring them into our home, which is what we have done.
I will now get to my presentation. I'm here to speak on behalf of the in-home family care givers. I am a care giver of two elderly people, both in deteriorating mental and physical health. I'm in the process of trying to secure appropriate long-term facilities for them both. I'm not here to give an objective overview of the proposed legislation changes. I represent the thousands, and over the next few decades millions, who will be affected by the changes that are proposed, so I'm going to be very subjective.
I see nothing in Bill 101 which suggests that the process I am going through, and many in this room have probably been through, would improve with any of the proposed changes. In fact, what concerns me is that if this bill were in place right now, my options for my in-laws' long-term care would be reduced, possibly with tragic consequences to them and the rest of the family.
My mother-in-law's normal nature is such that with this system she would be forced into a nursing home, probably here, where she has never lived. We had to bring them from Cornwall. She would not necessarily be able to go into a home in Toronto, where all her family is and can visit her, and alone in a strange place, with old people who are sick, this woman could not survive. That's why I'm sending her where there is at least her sister in the same home and family visiting. It's the best we can do.
I had a problem with placement coordinators. As I say, I've had a lot of experience lately with the system and the way it works now. I've been very impressed with a lot of it, and I must say one of the first things I'm impressed with are the people. However, I am currently working through someone who's called a placement coordinator to find a suitable extended care facility for my father-in-law. This is going through the public system. Her job description is somewhat less than what is suggested in the working paper, Redirection of Long-Term Care and Support Services in Ontario. She does not have the power to refuse placement to my father-in-law. Nursing homes may deny our request for placement if they do not have the ability to meet his needs -- I can understand and accept that -- but there are other nursing homes which do provide the extended care my in-laws need. There are alternatives and choices.
I'm concerned that the powers bequeathed to this new breed of placement coordinator gives the individual in that position control of the lives and deaths of a few million Ontario residents, and not only the elderly but also their families and friends. He or she holds the only key in this system to access all in-home services and long-term care facilities. I find this prospect scary.
Under Bill 101 there are to be no private placements by which a family or individual in an extreme situation -- which can happen almost overnight, in our case two months -- can get the facilities they need when they need them. When my in-laws moved in, my mother-in-law appeared to be perfectly normal and healthy -- not too bright, but normal and healthy. In the last few months, dementia has reached a point -- I won't go into the details, but it's very difficult in the home.
All placements ultimately are to be at the discretion of this all-powerful placement coordinator. Under the proposed new system, my mother-in-law would have been forced into a local facility where she'd know no one. In her normal state of mind, this would have reduced her to a vegetable. She never could deal with large groups of strange people nor make friends. Now, with deteriorating mental faculties, it would kill her very quickly from the stress. From talking to friends whose parents have dementia and Alzheimer, they actually have the same fear even though their parent was probably very bright under normal circumstances.
We have found this alternative route. This would not have allowed us that.
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I can appreciate the thinking behind the intent to bring all facilities and services under one roof, so to speak, but by doing so, you take away alternatives, forcing us all to a single system which cannot meet all the needs that exist when they occur. I appreciate that the standards of nursing homes are to be raised, having visited a number of them and, as I mentioned earlier, saved my father-in-law from one which to be appeared to be something out of the 19th century in Charles Dickens's time.
But please do not close the door on the alternatives of families and individuals. Leave the private route open, and may I suggest it be expanded. The standards of all long-term care facilities can still be raised with what's in the bill. You can do that without closing the door to private options, as it appears is intended by Bill 101.
The appeal process: I couldn't believe it when I read it. Bill 101 creates the concept that an individual can be refused admission to long-term care by this placement coordinator. The appeal process outlined appears to be a release to the problem of the single door, single keyholder. But Bill 101 puts the onus of appeal on the shoulders of those least able to understand or cope with the process, and a lawyer may be needed from the beginning, since further appeals may ultimately go through the Divisional Court. Any mistakes you make trying to represent yourself, you won't make it through the Divisional Court. That's lawyers' territory.
This whole process increases the financial, emotional and physical stress and responsibility on family and friend care givers as well as the individuals themselves. The additional workload of the appeal process would be impossible for care givers such as myself to handle on top of all the other responsibilities, intimate things, that go with caring for my in-laws -- and I have a lot of home care, by the way. I can barely keep up with the changes in their needs and the associated doctors' appointments, testing procedures and selecting the appropriate means for the whole family and our staff to meet their fast-changing needs.
I cannot imagine any reasons for which an elderly individual could be turned down, so why there's a need for this I don't understand. And at that point in the life of any individual, the lengthy appeal process outlined -- and don't tell me it's short -- becomes a joke, a very cruel joke, and to make the individual responsible for initiating such a process shows considerable unconscionable ignorance on the part of those who created this document. They should live in my home for 24 hours.
The thrust of the working paper and the act fail to recognize the fact that many elderly suffer health problems which leave them unable to direct their own care or assess their own needs, much less deal intelligently with a bureaucracy.
As for this concept that people would prefer to stay in their homes longer, I am sure my father-in-law, who has the mental capacity most of the time of a two-year-old, at best a seven- or eight-year-old when he's on a good day, and my mother-in-law, whose mental health currently is that of about a seven-year-old, would tell you gladly they would rather have stayed in their home. I don't know if either one of them would still be alive or in any state of health to enjoy what they have.
Having observed the secrecy which surrounds the current services which offer help under provincial and local funding, such as home care, I rather question if in fact this bill isn't merely to limit the number of people who would dare question the authority of the placement coordinator. You make that appeal process difficult enough and people won't appeal. They're stuck.
While it is the intention of this government to establish an Advocacy Act to act on behalf of seniors who are unable to express their needs or act on their own wishes, the onus remains on the physically and mentally incapable individual to have the presence of mind to know his or her own inabilities and to know how to intelligently seek this avenue of assistance.
My mother-in-law thought I was crazy Saturday night when I tried to quiz her and did not understand why she could not make up her mind which room she was going to sleep in that night. When our support staff went up with her, as she was wandering around the house and finally went up stairs, we could not determine, what is this other room? What is the choice? I was concerned I was going to go to bed, my husband and I, and we'd find her in our bed, or was it our daughter's room? No, it turned out the alternate room was the bathroom, and you want to ask her if she can assess her own needs? You want to put her in the position of a possible appeal? As I say, she's probably maybe a little younger than most people with her mental and physical health but not that much.
You have a policy that's stated very strongly in here which I can't understand that says no new chronic care beds. I'm sure there must be something I'm not understanding here. If there's to be no increase in the number of extended or chronic care beds available in the near future, either under government funding or privately created, this is a contradiction. This is going to force people into a lengthy waiting list, risking that their needs will increase beyond what is available or will be available under in-home services and beyond what a care giver can provide or be reasonably expected to provide in a home setting, long before an appropriate bed becomes available. A bottleneck is very likely to be created which will undermine the whole intent of the working paper, which seems to pay a lot of attention to care givers, but in fact I question that.
It is noted in the working paper that, through sheer demographics alone, the number of people in need of chronic beds will increase, reaching a 68% increase just over the next 17 years. That's not that far in advance, and a few of us will be in this category in 17 years. The average age of admission to long-term care facilities is now over 80 years. It wasn't that long ago, I understand, it was only around 70 or 72, and by the way, that information also, the 80 years, comes from the working paper.
With the existing level of in-home support services, with just what's available now, more people are in fact staying in their own homes longer, and therefore the greatest demand now, by the time they are ready to leave their homes, is for extended and chronic care beds.
More often now, requests for beds are emergency situations. I came across this when we were looking for a nursing home a year ago now in Cornwall. The placement coordinator there was just saying: "Look, we're doing our best, but pretty well every placement we now have is an emergency, because people have been able to stay in their homes as long as possible until it's just no longer -- and it's now, `We've got to get them out quickly,' and there are no longer choices. And there are so few beds."
More often now, requests for beds are emergency situations wherein available in-home services, plus the care giver, cannot come close to meeting the minute-by-minute needs of an elderly family member. Such emergency situations can and do literally occur overnight -- I think the highest rate of strokes is between something like 5 and 8 in the morning -- whether it be a fall, a stroke or even a sudden increase in the progression of a disease or condition, which is what I face, with my mother-in-law dementia, a very advanced, cruel diabetes with my father-in-law.
That a study is being done to examine the role of chronic care facilities actually seems rather redundant. Why you need it I don't know. The information to put together such a study is actually contained right in here and it's very well known by those already working in this field. You probably will have gathered a lot of that information just from your forum. You've been in a number of cities, I know, and you've probably heard all those problems already.
My last point is actually a summary of what both Bill 101 means and the points that are here as well as a bit of what's here. It makes it very clear that the government's intention with this new direction in long-term care is to place the primary responsibility for care of the elderly square on the shoulders of the family and friends and the elderly individuals themselves, in the guise of this being a good thing and respecting their dignity.
Personally, I'm a former reporter and a federal civil servant in the propaganda end of things and well aware of the trick of governments to publicly announce great intentions under new programs that look and sound great but which in practice actually take back some or most of what was originally there. This bill, with a few exceptions, is one of the most obvious cases of this I have ever seen.
The working paper speaks of increasing in-home support and raising standards in long-term care facilities, but the reality of the current situation shows some possible insecurity on the part of the government. Cutbacks in home care provision and more rigid standards under which home care and associated services can be provided fly directly in opposition to the stated intent of the working paper. Simply, this government is saying one thing and doing the opposite. And because of the amount of home care, I get in on all the grapevines, so I know what's going on.
If this is the case now, I'm very suspicious about the form and restrictions that the regulations, yet to be seen, are going to hold. This really bothers me. To see an act and not know what the regulations are -- it is not uncommon, for a number of various reasons, for something to appear in regulations that totally contradicts what's in the act, and unless somebody takes it to court, it never is resolved. I would hate to see that to be the case.
I see Bill 101 as offering what appears to be great promises to individuals and families, yet in fact it's forcing the onus of care on those individuals and on their families, in spite of inappropriate individual circumstances and the inability of some families to respond to the needs of elderly parents and relatives. More families, in spite of their particular circumstances, will be forced to take on the care of elderly relatives for longer periods of time, with no additional beds, than is currently the case.
Few houses are large enough, and here's a very significant pointand you'll say "anecdote." No, it's not. Few homes are large enough or have the bedroom and bathroom facilities on the first floor to accommodate a disabled elderly relative, and certainly not two. We're fortunate; the house we rent did have an addition put on. A laundry room was turned into a four-piece bath and I gave up my den for my father-in-law. He's on a walker or needs assistance. He can't handle stairs. The one time we did take him up to the second floor, he was sick to his stomach.
I don't know of very many homes which can accommodate someone under those circumstances. You can't take care of an elderly relative in-home unless you have a bathroom on the main floor, and you need a bathtub. Think. Do you know any homes like that? Maybe one in 10.
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Time and privacy for a parent and teenager to be alone and meet the emotional needs of those young adults is gone. Thank God we have done a very good job with our daughter, now 18, that she has been able to withstand this past year. But I know where I've slipped, and she just doesn't complain. Fortunately, our other son is 26 and he's more help. That's good.
More of us adult children care gives are in our forties and our fifties, and in some cases even older. Many of us are single or divorced and raising children and trying to have some life of our own. Thank God I have a wonderful husband myself. I could not have survived this past year without him.
The average family simply cannot adapt to the increase in the intrusion of professionals in the home, however helpful they intend to be. You have to realize that we have, I think, five different care givers who come into our home over the course of the week. We could have but we decided not to have four different other professionals making regular visits into the home. While we have been able to handle the stress of that, of these many strangers coming in and discussing our most personal aspects of our family lives, most people I have spoken to cannot understand how we do that. I guess because we've always had a very good family situation to begin with, we have been able to cope with it. But I have to admit I know many family situations where that kind of intrusion and those strangers asking those questions would just not be.
The first priority, which is what happens when you have the elderly in the home and you have all these professionals come in -- it becomes a forced priority of the elderly. This hurts and deprives families of the time and mental space needed to meet the needs of other members of the family. I believe my own daughter's health has been neglected, and I may pay for that. These needs cannot be scheduled to occur only when respite care is available, and by the way, respite care in our case would be totally out of the question. It's just not a practical alternative in many cases.
There's also the increased financial burden on families of the additional costs of heat, hydro and food which is not addressed. At the very time when elderly parents need help, it's so often the same time that middle-aged couples have college- and university-age children also in need of financial assistance to continue their education. Who gets first call on the available funds that middle-aged couples have? Fortunately, that is not our situation, but it is the situation of others I know. In our case, my father-in-law was smart enough to put money aside.
The additional household costs of caring for my in-laws is currently just under $600 a month. That is compared to the costs for our family of four. I keep everything recorded very well on a computer, so I had all my figures to do my comparison of the year before and the time since, and that has actually gone up from about $521, I think. Around June I did my first calculations after they'd been in for a while. Their food needs and nutritional needs alone account for most of that $600, probably about $400 or $450. May I add, that does not include the cost of medicines,which are no longer covered by provincial drug plans for seniors -- they took that back on us too -- nor the cost of the diapers for my incontinent father-in-law, and that runs very high too. I don't have any idea if that's included. Under some home care programs, this could have been provided for, but because we didn't need quite the extent of a certain program, we don't get this covered.
In conclusion, there is nothing wrong with what Bill 101 honestly gives, such as expanding the availability of the kind of care we have been able to access, but there is much morally and practically wrong with what it takes away. It's our right as consumers to have choices and alternatives to meet our particular needs when those needs arise, and I can't see how this offers us very much of that.
The Chair: I'm sure, Ms Cluff, that everyone in the committee wishes that you would not have had to come before the committee. I think, as well, we're indebted to you for coming, because I suspect that there are far too many people in the province and indeed even among the committee members who are experiencing the kind of situation that you are. This was not, I'm sure, an easy thing to do, but we are indebted to you for coming.
We'll begin the questioning with Mr Jackson.
Mr Jackson: Yes, I would agree, Ms Cluff, that your candour and your honesty, your brutal honesty, about the circumstances that you're living under, your ability to convey them to us, is very close to a first for this committee. Having said that, you demand of us to be equally candid and there's a certain integrity that you draw from out of us as a result of that.
On only one previous occasion have I said that all three political -- but I feel I must say it now in a tribute to you and your presentation. I have said that all three political parties in this province have foisted on the public a concept of community-based health care which is about a 25-year-old concept born out of circumstances and new wave treatments in Europe, but we have not as politicians changed the optics, we've not changed the language. We've continued to sell this.
Today in Ontario, it's very clear that we have a system that is in contraction and the people will have less access to health care in this province. That's a fact of life; the document says it. But you, perhaps, have made it more clear. I won't ask you a question; your brief is very clear and very poignant. I only wish to say to you that you remind me of a Chinese proverb which says that the true measure of a society is how it cares for its elderly, and you have left that with me, if not other members of this committee. Thank you.
Mrs Cluff: I appreciate that.
The Chair: Before moving to the next question, there is a message here, and because it is an emergency, if there's a Mr Lou Beauchamp in this audience, would he please call home. We're not sure whether this is the appropriate meeting or another, but if there is a Mr Beauchamp here, would you please call home.
Mr Hope: There is another meeting going on next door.
The Chair: Yes, well, they're passing the message in other meeting rooms as well. Given the nature of it, I apologize, but I wanted to just ask if he was here. Ms Caplan.
Mrs Caplan: I think everybody on the committee was moved by your presentation. I want to thank you for coming and sharing your experience with us. I think there are a number of us -- I can only speak for myself -- who have also experienced the frustration of trying to access appropriate care for parents and in-laws.
One of the things I honestly believe is that the existing system is in need of reform, and that is not only from experience but because I know that in the existing system today, all the wrong incentives apply. With the per diem rate that is in place in nursing homes and homes for the aged, the incentive there is to take in the person who needs the least amount of care, and you therefore often have people for whom a placement would be most appropriate. So the concept of having an assessment by a placement coordinator, I think, is a good concept and --
Mrs Cluff: We do have that, but it's not part of the system.
Mrs Caplan: You do, yes, but not everywhere.
Mrs Cluff: No. More should be done, yes.
Mrs Caplan: That's right, yes. There are parts of the province that do not have that. I see positive results coming from the level-of-care funding which will hopefully address the individual need and allow for choice. But there are a number of parts of this bill that can be improved.
Mrs Cluff: There are parts which I must commend, to be quite honest with you, especially where I mentioned having seen this one nursing home and having spoken with another individual who had seen the same one. He also was almost moved to tears from the same experience in that place. At the same time I've seen fantastic ones, private, public, whatever. But no, there are some excellent parts, both in the bill and this. I'm only pointing out the ones where a person who's drowning is telling you what it's like. This is where I see the weak points. For the most part, for the rest, I have to commend a lot of it.
Mrs Caplan: The other concern that I have, and we've discussed this in the committee, is just this one small part. What's missing are the comprehensive long-term care framework and policies which we've been told will be out in March, we hope, and also the chronic care role study that you referred to as being redundant. In fact, to develop this without that could prove to be a serious error.
I want to thank you for coming today. I don't have any questions. I think your frustration and your experience are important for the committee, and I hope the government's heard because it is important to look at the flaws and also at the parts that are missing from this piece of legislation. If it's not going to be addressed here, then I think you and all the families and care givers and all of us potential future clients would hope that those missing pieces will be a part of that framework and chronic role study, for one thing.
The Chair: Mr Wessenger.
Mr Wessenger: Thank you very much for bringing your personal experience. I think too often we just hear more theory or more from service providers. It really brings us back to reality when we hear from someone who does have the responsibility of being a care giver. I think probably all of us here have shared -- maybe not to the extent of your experience -- with elderly parents or in-laws in that care giving experience and understand the stress that it puts on families.
What we're obviously trying to do is to make a system that puts a priority on those people who have the greatest need for care. We want to ensure that those having the greatest need get the first priority. The only thing I can say to you is that this whole placement coordination system is an attempt to try to ensure that people with the greatest need get the first priority, and one of the advantages of the system is that it isn't limited geographically. In other words, the person assessed in Ottawa has a choice of going anywhere across the province.
Mrs Cluff: I wasn't aware of that. Good.
Mrs Caplan: That's to be defined in regulations. It's not in the legislation.
Mr Wessenger: That's the way it will work, so it will be an advantage. Also, I think it will counter that problem of some facilities preferring to take the lighter load care, and this will ensure that the heavier load care would get first priority. In your instance, I think your two in-laws would certainly have the highest priority in those circumstances.
Mrs Cluff: I can understand to some degree the sort of single gate, the key holder, but when that is combined with no expansion of beds, it's the two put together where I see a bottleneck occurring until such times as new beds are added. There is sort of an overlapping that I can visualize occurring here where, during that time, people will not have the option of private and are stuck on a waiting list.
Mr Wessenger: Perhaps maybe you could say what you mean by "not have the option of private."
Mrs Cluff: For example, the placement for my mother-in-law is not through a placement coordinator. It's not through the public system that's in place at all; it was direct contact with the home. Yes, they had a private room available and were very pleased that it was dear Ethel Rogers's sister, and we made arrangements. We were sent medical material for our doctor to fill out and we've sent that in. Thursday morning at 9:30, a quarter to 10 she goes through psychological and physical checkups and an interview and a nice lunch, and in all likelihood will be unpacking her clothing by late Thursday afternoon. There has been no involvement of any public coordinators or any of the system currently. This is what I mean by private placement.
Mr Wessenger: That's what you mean, without going through the placement coordinator system.
Mrs Cluff: But under this Bill 101, I understand that door would not be in there for us.
Mr Wessenger: As far as long-term care facilities are concerned.
Mrs Cluff: They have extended care there too.
Mr Wessenger: Yes. Perhaps one thing I should make clear is that certainly the government does recognize that there are problems with respect to the distribution of long-term beds throughout the province. There are clear areas that have deficiencies. In fact, my own area is one of those areas that has a high --
Mrs Cluff: What is your area?
Mr Wessenger: It's Barrie.
Mrs Cluff: That's what I thought. Hello. I'm formerly from Barrie.
Mr Wessenger: Are you from Barrie?
Mrs Cluff: Yes. My husband, Guy Cluff, was the general manager at the public utilities commission.
Mr Wessenger: All right.
Mrs Cluff: You may remember him.
Mr Wessenger: Yes.
Mrs Cluff: I may have interviewed you, actually, in one election in the late 1970s; I'm not sure.
Mr Wessenger: Yes, I thought the name was so familiar but that's --
Mrs Cluff: That's going back about 13 years.
The Chair: Perhaps on that note we will bring this evening's hearings to a close. Again, we all thank you very much for coming here this evening and sharing your experience with us.
Mrs Cluff: I really appreciate the time you've given me.
The Chair: We wish you the very best for the future.
Mrs Caplan: Your in-laws are very lucky.
The Chair: The committee will stand adjourned until 9 o'clock tomorrow morning.
The committee adjourned at 2125.