Tuesday 2 February 1993

Long Term Care Statute Law Amendment Act, 1993, Bill 101

Catholic Health Association of Ontario

Ronald Marr, president

Sister Roberta Freeman, member, long-term care task force

Dan Faulkner, vice-president

Huronia Helpers

Janet Allingham, president

Joan Rowe-Sleeman, director

Dr Alan Bruce-Robertson, second vice-president

Ontario Council of Hospital Unions

Steve Eadie, secretary-treasurer

Dian Goldstein

Attendant Care Action Coalition

Ian Parker, representative

The Wexford

Lynn Bolton, administrator

Luba Funston, assistant administrator

Advisory Council on Senior Citizens

Bill Hughes, vice-chair

Royal Canadian Legion--Ontario Command

Ross Paterson, president

Jack Currie, chairman, veterans' services committee

Federation of Ontario Facility Liaison Groups

Margaret Paproski, president

Janet Allingham, secretary

Peter Delsnyder, vice-president

Baycrest Centre for Geriatric Care

Dr Moshe Greengarten, vice-president, publicity and community affairs

White Light Hospice Foundation

Dr Geoffrey Norris, president

Shirley Henry, chairperson

Anne Norris, founder and vice-chair

Ontario Nursing Home Association

Bill Dillane, president and chairman of the board

Brent Binions, vice-president, financial liaison

Carla Pepper, director of resident care

Ontario Home Health Care Providers' Association

Judith Bishop, president

Muskoka Centre Friends

Charles King, president

Reg Black, past president


*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:

Carter, Jenny (Peterborough ND) for Mrs Mathyssen

Hope, Randy R. (Chatham-Kent ND) for Mr Drainville

Jackson, Cameron (Burlington South/-Sud PC) for Mr Jim Wilson

Jamison, Norm (Norfolk ND) for Mr Gary Wilson

Marland, Margaret (Mississauga South/-Sud PC) for Mrs Witmer

O'Connor, Larry (Durham-York ND) for Mr Owens

Sullivan, Barbara (Halton Centre L) for Mr Daigeler

Wessenger, Paul (Simcoe Centre ND) for Mr Martin

Also taking part / Autres participants et participantes:

Laverty, Patrick, director, policy branch, long term care division, Ministry of Health and Ministry of Community and Social Services

Clerk / Greffier: Arnott, Douglas

Staff / Personnel: Drummond, Alison, research officer, Legislative Research Service

The committee met at 1007 in committee room 1.


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): Good morning, ladies and gentlemen. I now call the standing committee on social development to order. We are here to review Bill 101, An Act to amend certain Acts concerning Long Term Care. Yesterday we had the minister and officials from both the Ministry of Health and the Ministry of Community and Social Services, and today we start with representations from various organizations and individuals. I would like to call first upon the Catholic Health Association of Ontario, if you would be good enough to come forward. Please introduce yourselves for Hansard.

You have half an hour for your presentation. Even though it's a little past 10, we'll have the full half-hour. Welcome to the committee.

Mr Ronald Marr: My name is Ron Marr and I'm president of the Catholic Health Association of Ontario. I'd like to thank you, Mr Chairman, and members of the committee for allowing us this opportunity to meet with you this morning.

Before introducing my colleagues, who will make the actual presentation to you, by way of background to their remarks I would like to take this opportunity just to tell you a little bit about the Catholic Health Association of Ontario. Our association was founded in 1931 and is a provincial association representing a variety of catholic health organizations across the province of Ontario.

Our membership consists of 38 acute and chronic care hospitals, homes for the aged and community-based, long-term care programs. In addition, the nine religious congregations that own and sponsor these institutions and the Ontario Conference of Catholic Bishops, which represents the Catholic bishops and the Catholic diocese of the province, are also active members of our association.

Ours is also one of the few, if not the only association which represents acute and long-term care, community-based and institutional health and social service organizations.

As some of you know, the Catholic Church has had a long and proud tradition of providing health and social services in this province. The first Catholic hospitals in Ontario were established in 1845 in Ottawa and Kingston. Today, approximately one in seven hospitals in Ontario is Catholic and they operate close to 8,000 beds in large teaching hospitals, mid-sized community hospitals and smaller rural communities.

Catholic long-term care organizations manage over 1,800 beds and sponsor a wide variety of community-based programs. Our health organizations have been leaders in developing a wide variety of innovative, community-based programs and services such as detox centres, an AIDS hospice, specialized services to women and children, family centres, seniors' programs and visiting home care and nursing services.

Our members who share in the healing ministry of the Catholic Church have historically taken a special interest in meeting the needs of the elderly, disabled and disfranchised of our society. Many of our institutions and programs were founded when no others were interested in or able to meet the special needs of these sectors of our society.

We have recruited volunteers and staff who are committed to providing the best quality of care to all, regardless of colour, creed, religious affiliation or status in society. The religious congregations that own and sponsor our long-term care institutions and community-based programs, which strive to keep the people of Ontario in their own homes, have also paid particular attention to recruiting qualified volunteers who represent the communities where our institutions and services are located in order to govern these institutions and programs in a responsible and yet creative and innovative manner.

It is with this background in commitment that we appear before you this morning to share with you some of our concerns about Bill 101.

In our presentation and subsequent written comments, you will see that we support the need to reform Ontario's long-term care system. We also have some concerns, however, about this particular piece of legislation and its potential to impact negatively, not only on the institutions that provide service, but on the consumers of these services who are perhaps the most vulnerable in our society.

To present our observations, I would like to introduce to you Mr Dan Faulkner, who is the vice-president of the Catholic Health Association of Ontario and Sister Roberta Freeman, the recently retired president of Providence Centre here in Scarborough.

Sister Roberta is particularly well qualified to speak to you on this important piece of legislation. She has dedicated her life to the field of long-term care and is recognized as an expert, not only in Toronto but across Ontario and Canada. I'd like to call on Dan and Sister to continue our presentation, please.

The Chair: Welcome to the committee.

Sister Roberta Freeman: I'm very pleased to speak on behalf of the long-term care task force of CHAO relative to this important piece of legislation. I'm going to speak to two points that we have made in our paper, and Dan is going to carry on with the third.

The first has to do with the valued principle of governance. We feel that there's a potential for an erosion of the principle of voluntary governance leading to less autonomy and flexibility of governing boards to determine the nature and purpose of the organization, as well as its policies and direction.

Bill 101 almost exclusively focuses on operational procedures and it clearly distinguishes between what will and will not be allowed, with specific sanctions for non-compliance. Operating subsidies are pre-determined by regulations and care requirements for individuals will be used to determine resource allocation to each resident. Funding will be controlled by required service agreements, resident care plans and levels-of-care funding criteria. Quality assurance programs will be mandated and reliance on inspection and sanctions will ensure that quality of care meets provincial requirements.

We feel that this piece of legislation, rather than being an enabling piece of legislation, appears to be very restrictive. It would seem that with the government's attempt to bring all providers of service under the same legislation, the concept of governance and the authority of the voluntary board of directors may be severely undermined.

As well, I'm sure we're all aware that the board of directors is responsible for carrying on the mission philosophy and values of the owners of our Catholic facilities. This is a principle and a responsibility that the CHAO supports very strongly.

Boards of directors over the past many years have served homes for the aged and charitable homes and institutions very well and have enabled these facilities to respond to the particular needs of their communities. This has resulted in uniqueness of programming etc among the various facilities, a concept that will be lost to long-term care generally if no flexibility is allowed and if boards of directors have no authority to make such decisions on behalf of the communities they represent.

Our association supports efforts to establish effective accountability mechanisms in long-term care facilities, but we do not believe that stringency will achieve these results. A voluntary governing board in the non-profit system draws multidisciplinary and knowledgeable individuals to play a key role in the governance of each home. Highly skilled board volunteers come from numerous sectors of the community and not only provide a vision to the organization, establishing policies which promote excellence and respond to changing needs, but they also provide an important accountability link to the community.

Again, we're concerned that the inspection procedures and the potential imposition of sanctions could have an undermining effect. Sanctions and inspections can lead to a confrontational rather than a collaborative relationship, to say nothing of the additional cost that this will be to the industry generally, and also to the homes and the service providers because of the time and the paperwork that will be involved in responding to inspections and potential sanctions.

As well, in Bill 101, inspection and compliance through legislation and regulations are established as an important accountability. We really feel this represents a very narrow focus on accountability.

The second point I would like to spend a little bit of time on is the legislation which questions the professionalism of health care workers in long-term care facilities by the proposed accountability mechanisms. One of the points that's made in the legislation is, "To ensure enhanced accountability in long-term care, the proposed legislation is empowering the province to make rules respecting plans of care which will include requirements that homes involve the resident and resident families in the development of care plans."

Of this we are very supportive. We certainly feel that families and the resident should be involved in that. However, within the proposed legislation there is further delineation of how and when to develop the care plan. We contend that this is a threat to the professionalism of health care workers. Standards of practice for nurses and for other health care professionals will be undermined if legislation dictates such procedures.

As well, we know that the care and care plans must be flexible if they are going to respond adequately to the needs of the residents, and we find it very difficult to find how you can dictate these and yet have the flexibility that is required to meet the needs of the resident and the changes that may take place at any given time within the care plan.

I think right now I'll turn it over to Dan to speak to the last points that we would like to make.

Mr Dan Faulkner: CHAO is also concerned that the basic human right of choice which is fundamental to the primacy of the individual and to human dignity could be threatened within the context of the placement coordination model. As we understand it, admissions to each home will be made by a specific placement coordinator who will be charged with the responsibility of determining the eligibility of each applicant based on criteria which meet the levels-of-care funding guidelines. We fear that citizens will not be given any choice in their placement, or where such choice is given it will not be weighted heavily enough within the evaluation criteria.

In October 1991, the ministers responsible for the redirection of long-term care released a public consultation document entitled Redirection of Long-Term Care and Support Services in Ontario. Individual self-determination and respect for cultural diversity were two of the principles upon which all policy decisions would be based.

The right of individuals to choose preferred accommodation with their spouse or based on the ethnic population or religious affiliation of the home must be considered in conjunction with other determining criteria. Bed accessibility cannot be the only driving force for placement; otherwise, people with stated preferences could be placed in available beds regardless of their choice. Subsequently, they might never be admitted to their preferred accommodation as other non-institutionalized individuals are identified as priorities for these beds as they become available. If they are fortunate enough to finally be deemed eligible for that home of their choice, they will be forced to change their environment yet again, which could be a significant emotional and physical burden.


Failure to give due consideration to preference in advance will absolutely deny a quality of life that would otherwise be enjoyed with a spouse, with people of similar ethnic backgrounds or in homes with religious affiliation and appropriate attention to spiritual needs.

In Bill 101, individual homes are also unable to fully exercise their responsibility by having limited grounds for refusing a placement and having no guaranteed appeal process. The responsibilities of organizations are just as important as the right of choice guaranteed to individuals. Today, facilities are designed to provide all residents with accessibility to services and programs which meet their specific care requirements. This would include matching residents to areas of the home which allow for spousal cohabitation, easy accessibility to washrooms or easy accessibility to bathing facilities. The facility must have sufficient opportunity to match those residents with the appropriate bed and the appropriate environment. Accessibility to a bed must not override the need for appropriate and safe care in making placement decisions.

For hundreds of years, Catholic health care organizations have provided residents and patients with a quality of life based on a holistic approach to health care interventions. Ignoring a person's spiritual and social needs neglects their opportunity to achieve the highest quality of life possible at this important stage of their life.

CHAO does support the placement coordinator concept, but a more cooperative approach will be necessary to ensure that the above factors are considered to maintain lifestyle choices which are crucial to human dignity and individuality. Failure to recognize this ignores the broader determinants of health and quality-of-life issues which expand beyond the boundaries of our health care system. Therefore, we ask this committee to give careful consideration to both the principle of accessibility and the quality-of-life issue in Bill 101.

I'd like to thank you for the opportunity to express our concerns at this forum, and I hope that we've provided this committee with some thought for further deliberations. Our commitment to this process, CHAO's members' commitment to this process, and the time which has already been invested in consulting and policy development simply necessitate that the redirection be done right the first time, and it's under this premise that we have brought forth these recommendations.

Thank you very much. We'd be willing to field any questions you might have.

The Chair: Thank you very much for your presentation. We'll have approximately 15 minutes for questions. I propose to divide that time equally among the three caucuses, beginning with Ms Sullivan.

Mrs Barbara Sullivan (Halton Centre): I appreciate this presentation. I should tell you that our party has raised, in the House and yesterday in hearings here, the identical issues that you've raised in your presentation to us. I want to speak to the last one first, which is with respect to the concept of choice with respect to placement and the role of the placement coordinator in that.

We were surprised yesterday to hear from Ministry of Health officials that the concept was more of what we wanted and what you have expressed in terms of your requests. We indicated that we felt that the legislation was not written that way, and the Ministry of Health has agreed to come back with an additional presentation with respect to the role of the placement coordinator and the opportunity for choice among the potential residents. So we may have something more, but clearly the act is not written the way the ministry tells us the intent was to be.

As well, I was quite taken with your discussion with respect to the enforcement. It seems to me -- and I think Ron would probably remember this -- that in about 1986 there was a Woods Gordon study which talked about enforcement procedures failing and compliance management being an appropriate method, and yet it seems to me that the legislation is now calling for a return to the pre-1986 mechanisms of dealing with excellence and standards within the home community. You might want to just speak about what the old way was and if we're going back to that.

We raised the quality assurance. I think the ministry has used the wrong word. I think it's as simple an error as that, but we haven't heard back from the ministry on that point. I'd be very interested in going back more, say, with a comparison of how the old enforcement mechanism worked with what occurred after 1986-87.

Mr Marr: I think I agree with you wholeheartedly, Barbara, but maybe Sister Roberta might be appropriate to answer that. I think she has had some experience in the accreditation process.

Sister Freeman: I guess rather than inspection, which we feel is a very policing way of handling things, we feel that the accreditation meeting certain standards, peer review and these kinds of things are much better ways of handling this. I agree with you. Today continuous quality improvement is what we're all trying to do, and quality assurance is a very, very narrow, almost static kind of way of looking at things. So we included in our paper the concept of continuous quality management, which we think is much more in keeping with what, in fact, the government really wants.

If you have these inspections and sanctions, that just leads to confrontation; it is not a way of ensuring that quality improvement takes place. And again, inspections are one-time static kinds of approaches. Seeing a situation at a given time does not mean that any real good is going to come of it. We in the homes for the aged were not subject to those kinds of inspections. We had accountabilities, and we certainly believe in that. But I feel it's retrograde to go back to inspections and sanctions.

Mr Jim Wilson (Simcoe West): If I may begin on a personal note, with the indulgence of the committee, I want to thank Sister Roberta and the Sisters of St Joseph for having, some two weeks ago, hosted the 50th anniversary of my great uncle, Father Clarence's, ordination to the priesthood -- a personal note from my family and a public thank you. Having said that for the record, we'll get down to business.

Sister, you mentioned in your part of the presentation that you felt this legislation in many ways undermined a number of things. The principle of volunteer governance: I gather you feel that accountability is sufficient, given the volunteer structure of the board system that you now work under.

Secondly, I think there was some worry in your remarks that the way this bill is worded and its approach to this sector may somehow undermine the Catholic ethos or Catholic values that are very much part of your homes. Then I'd like to get into the right of choice, but do you want to expand on that? Do you have anything specifically in mind that we might be able to help you with in changing the legislation to ensure that neither the spiritual values nor the volunteer structure is undermined?

Sister Freeman: Well, it seems that this bill as it's now being put forward, is very operationally oriented rather than being enabling legislation or a sort of broad structure under which we should operate. It seems to get into operational issues, for which we feel that the boards of directors should have the responsibility and accountability.

Whether this directly addresses the question that you're putting before me, I'm not quite sure, but one of the concerns that many of us have about this legislation is that we're taking a very cookie-cutter approach to homes and care, that we're all going to be reduced almost to the lowest common denominator, if you will, which doesn't give the boards the ability to look at some of the special things that that community or that particular facility can bring to the whole field generally.

I'm looking beyond. You know, we can put something in place that might meet today's needs, but you have to look beyond that, to research, education, some of those components that are equally as important as the service you provide at any given time. I think boards should have some way to determine what could be something additional that they could bring to the field, and we don't see that enabling factor in this legislation. I think if we don't look to those kinds of areas of research, education and potentials that some facilities have for some enhancement or for some different approaches that they can bring, the field is going to suffer greatly from it, generally. I think that those are some of the things I would like to see. Maybe it is going to be allowed there, but we don't see it. It seems that everyone has to meet exactly the same guidelines, and when you get right into resident care plans and programming and all of that is legislated, it's not enabling; it's restrictive.


Mr Jim Wilson: I agree with you and go further, to the extent that so much of it isn't even spelled out in the bill; it's going to be left up to regulations, to a government that I'm not sure understands all of the intricacies. But that's why we have these committee hearings, to make sure that it does.

I want to very quickly, if we can, ask about right of choice. I appreciate your comments regarding the right of choice of institutions, but I just want to concentrate for a moment on the right of choice of clients. I gather, from your remarks, that you would like some mechanism in the bill that gives greater weight to the choice of a client with regard to the institution he or she may want to go to, rather than availability of beds. Have you thought about how we should do that? For instance, what comes to my mind is that we should give some sort of ranking order to specifically say that placement coordinators must, in the following order, take these things into consideration.

Mr Faulkner: I don't think we've given specific thought to actual recommendations for how it would be weighted, but we do bring forth that it should be weighted equally with every other eligibility criterion in determining that person's placement.

Mr Jim Wilson: Okay, equally, or did you want to give more weight to it? Do you want a pecking order or do you want to say that they have to equally take that into consideration? It's difficult putting you on the spot, but you want to make sure it's not lost in the mix.

Mr Faulkner: That's right.

Mr Jim Wilson: Okay, I appreciate it.

Mr Paul Wessenger (Simcoe Centre): Thank you for your presentation. I think it's been made quite clear that certainly the policy is that the person will be given a choice. The choice will be theirs whether they go into a particular institution, and also that choice will be an important factor with respect to giving them priority with respect to a particular institution. Do you think such criteria should be set out in legislation, as distinct from being left as a policy matter? In other words, should there be criteria right in the legislation that take account of such things as the individual's choice or cultural diversity? Should that be embedded in the legislation?

Mr Faulkner: I think our concern was the fact that so much was relying on regulations, and we weren't sure where this was going. We wanted to make sure upfront that this was a very important element of the eligibility criteria. Whether it's in legislation or in regulations, it's very important.

Mr Wessenger: You want to make sure that the general criteria are set out somewhere, either in regulation or legislation, is that fair to say?

Sister Freeman: That choice of individuals will be taken into consideration.

Mr Wessenger: And also recognizing the cultural diversity.

Sister Freeman: Yes.

Mr Wessenger: Right. Now, just a second question. I think I certainly agree with you that the term "quality assurance program" is a very technical term, if I'm correct. Would you prefer to see that replaced by more generic language? I know we always have these terms that are sort of current fads of the moment. Would you suggest something more generic so that we can take account of changing concepts in the future and changing language?

Sister Freeman: I certainly think it would be more in keeping with the spirit of the times to be more generic than to latch on to one or other particular piece of jargon, if you will. I take my cue a bit from the Canadian Council on Health Facilities Accreditation, which I think is a body that is well recognized. They do not want to have a program or anything; they want the principle of continuous quality improvement to be built into health care facilities and for that to be the principle on which we operate. I think I support that.

Mr Wessenger: You'd support substituting "continuous quality improvement" for "quality assurance programs"?

Sister Freeman: Yes, I think I would.

Mr Wessenger: Fine, thank you.

The Chair: Thank you very much for coming before the committee and for your presentation. I appreciate it.


The Chair: I now call on the second deputation, the Huronia Helpers. If you would be good enough to come to the front and if you could introduce yourselves. All of those mikes work. Welcome to the committee.

Ms Janet Allingham: Good morning, ladies and gentlemen. My name is Janet Allingham. I am president of Huronia Helpers. We are the parent organization at Huronia Regional Centre. All of our members have direct personal contact with a resident at Huronia Regional Centre. This is one of my fellow members, Mrs Joan Rowe-Sleeman, and Dr Alan Bruce-Robertson. Mrs Sleeman will be making our presentation this morning.

The Chair: Please go ahead.

Mrs Joan Rowe-Sleeman: Good morning, members of the committee, ladies and gentlemen. It's a great pleasure to be here this morning. Huronia Helpers is the parent organization at the Huronia Regional Centre, which is a schedule 1 facility for severely developmentally handicapped persons. We believe that the government has not previously adequately addressed the issues of long-term care for these persons. Therefore, we appreciate the opportunity to appear before the committee and to present some ideas for your consideration.

The image that many people have of a developmentally handicapped person is someone they already know who is perhaps living in the community and functioning reasonably well because of the supports which are in place to assist him. Certainly the philosophy of integration, which stems in part from Jean Vanier's work at L'Arche in France, has been instrumental in changing the historical approach to treatment in Ontario for those who don't function quite normally.

But there are indications that this process of change is like a riderless horse galloping off in all directions. The government is proceeding to close institutions and the residents are being reabsorbed into the general population, but there doesn't seem to be any real understanding of the degree of care needed for these residents and how age will affect them. They are a most vulnerable group and we have seen little, if any evidence that this group of severe to profoundly handicapped people has been considered realistically in policy planning.

Huronia Regional Centre has about 627 residents at the present time. Of this group, 24% are vision- and hearing-impaired, 35% are in wheelchairs, 10% exhibit severe behavioural problems, almost three quarters are over 30 years of age and the remaining residents are over 50. Thus, we have in a single schedule 1 facility a group of people who can actually be said to be already in long-term care, but with the added dimension of mental retardation.

We use the term "mental retardation" for clear distinction, because it can be accompanied by any number of other severe health problems, such as epilepsy, blindness, deafness, incontinence, and severe emotional disturbance which can include rage, depression, catatonic states and self-destructive behaviour. They may also be unable to walk, dress themselves and feed themselves, and they all require substantial, 24-hour-a-day care in daily living.

We feel that there's an alarming lack of understanding of the combined disabilities and that when you add in the aging factor, the problems take on a further dimension. For example, there's growing evidence that Down syndrome people begin to develop Alzheimer's, and the women have a greater problem with menopause and the accompanying bone and heart diseases. So health care is and will continue to be a major factor in the care of our residents.

At the present time very few, if any residents are leaving Huronia Regional Centre for the community. It would appear that their health requirements are so difficult that very few adequate and affordable placements can be found for them. In the Metro area, which is the catchment area for Huronia Regional Centre, there's much pressure from families for group home placements. There are 2,500 crisis situations in Metro where aging parents with developmentally handicapped dependents at home are in dire straits because of their own poor health. Their own age is making it difficult to care for their sons and daughters and they're actually frantic with worry about how they will be taken care of.

It appears that there's no quick or easy way to solve the predicament that management at Huronia Regional Centre is in regarding the government policy to place all the remaining residents in the community. There's a good chance that half will die there and that the remaining half will be very close to 50 before they may be placed, assuming -- this is assuming -- that the ministry will be fair in helping the crisis list of Metro Toronto.


In a recent Ministry of Community and Social Services document called Facilities Planning Project, May 1992, we read: "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 and corrections."

The first sentence is in conflict with the opinions of many parents. Again, it's a general statement and does not indicate any recognition of the special needs of most of the severely disabled. In the case of the second sentence, we're not sure what the author really has in mind, but we view any link or thought of care for our very vulnerable people being associated with plans for mental health or corrections as totally abhorrent. Such plans could easily set our people up as victims of abuse.

Of course, if we had unlimited amounts of money, we could solve the problem overnight, but I don't think that's going to happen and I haven't seen an Aladdin's lamp as yet. However, we suggest that creative, realistic ways must be sought to honour society's obligation to the residents of Huronia Regional Centre, all of whom have suffered through and survived the overcrowded years, the change from the Ministry of Health to the Ministry of Community and Social Services and the downs and ups of changing administrators.

All right. Suppose that ways are found and placements are found for the residents to be in the community: What's going to happen to them as they age and require more and more health services? We understand how critical the hospital situation is. There are very few beds. I suppose you could imagine the plight of a developmentally handicapped person in a grand mal seizure waiting for an ambulance and arriving at the hospital, where there are possibly accident victims and heart patients. An emergency ward is a very traumatic place, yet at the centre they can deal with the problems of seizures in a very quick and effective way with a minimum of fuss and stress to the patient.

We've absolutely no doubt that there will be a serious deterioration of health care for the profoundly disabled mentally handicapped if they're summarily dismissed as easy to care for and scattered in the community, where generic care is often unfeeling, ill-informed and slow. Therefore, in reading the amendments to Bill 101, we would direct particular attention to the following: (1) powers of the placement coordinator in determining eligibility in accordance with the regulations; (2) quality assurance plan; (3) inspection provisions; (4) funding.

We feel that the profoundly handicapped must be a clearly defined group in determining eligibility. They must have all their needs met. The inspector must be aware of their presence and funds have to be allocated for beds that will be needed for them.

Ideally, we would want the government to look closely at alternatives in planning for this group. You hear of the success stories in community integration, but not too often about the failures and the tragedies, of which there are some. We do eventually hear about them but often it's too late.

Admissions to Huronia are declining by edict, but it must be realized that the incidence of developmental disabilities is not necessarily declining. Modern medicine is saving premature infants who may have difficulties later in life. We have the problem of the crack-cocaine babies where the mothers have taken cocaine during pregnancy and may seriously damage the infant. Meningitis is not yet totally conquered, and birth defects are not always avoided by medical science.

We suggest that a more thorough cost analysis be prepared by the Ministry of Community and Social Services regarding congregate care in relation to community group homes. Reliable per diem rates are difficult to come by and almost impossible to obtain. In the ones that we have seen, the study would favour congregate care. We believe that a fair benefit analysis would also favour congregate care for those profoundly developmentally handicapped individuals.

There's much discussion of rights, choices and visions for the developmentally handicapped person, but the special group remaining at Huronia, as indeed at all the other institutions, perhaps are not aware enough to be able to state their preferences in rights, choices and vision. Should there be real alternatives, this would seem to us to include remaining in the home where they have been for so long with friends and dedicated staff, in a safe, structured environment where more than adequate, cost-effective health care is already in place.

Shortly after the plans for deinstitutionalization were introduced, most institutions, including Huronia Regional Centre, converted some ward-style areas to home-style apartments, and they used the homes that were already available on the grounds. Residents who moved into these homes and enjoyed this homelike atmosphere still had the benefits of central services, support staff, health care, kinesiology, recreational and social programs and access to outside community activities.

The original plan was that these residences would be a transitional step before being moved to the community. As time went by, parents observed that there were great improvements in the behaviour of the residents and their lifestyle in these settings. They were able also to check out community group homes. The family-style homes on the institutional property have in fact become a very popular choice for many parents. Those who have adult children in these placements want to retain them. Other parents whose persons are not yet in such a placement would like to have them for their family members.

Huronia Regional Centre is located on a beautiful land site. There is room to build more such accommodation. The land and the heating facilities are available. The services of the needed professionals could effectively be used. Last but not least, the residents are happy. It is interesting to note that clients who have left the centre and moved into the city of Orillia who can walk or have access to a bus often are seen back at the centre visiting their friends and their former home.

While the above lifestyle is a new way of looking at institutions, it is a plan that works. It does not put undue stress on the residents but gives them the ability to make some choices, and for the quality of the services offered, we believe it to be the most cost-effective.

In conclusion, Huronia Helpers sincerely requests that the government, when making plans for long-term care for Ontario residents, recognize and accept the need to include and protect our vulnerable, severely developmentally handicapped citizens.

The Chair: Thank you very much for your presentation. We'll move right to questions. Mr Wilson.

Mr Jim Wilson: I too want to thank you very much for your presentation. I think you are to be commended, each of you, for coming forward and expressing this view to the committee.

Having a riding that is close to Orillia and having places like Camp Hill in my riding, I hear very often from parents who express exactly the views that you are expressing. They're very worried, if their loved ones are to be moved out of Huronia, about where they would go and how they would be cared for.

I think it takes tremendous courage on your part to be as forthright as you have been. We are lobbied on an ongoing basis by many people, often centred here in Toronto, and groups that have very much the opposite opinion and have, I think, a utopian view of the world that everyone can live in a group home setting, not taking into reality, as you have, the fact that there isn't a bottomless pit of money there to ensure that all the needs of these residents are looked after. So I thank you for that.

I am curious to know something. I think the age statistics you have given us in your presentation are quite revealing, but secondly, of the 627 residents, what would your guess be as to how many have been residents of Huronia Regional Centre most of their lives, if that's a fair question?


Ms Allingham: Some of these people came at a very early age from children's aid. Some of them have come from when they were quite young, four and five years of age. No one really has been admitted to Huronia Regional Centre, except for the very short term, since the late 1970s. They've basically all been there since that time, and a lot of these people have been there a lot longer. Some of these people no longer really have families that look out for them. There has been much made of the fact that people "dump" them there. That's not true. Sometimes there just aren't families. Sometimes the families have so many problems and pressures that they just reach the point that they can no longer cope.

Mr Jim Wilson: I appreciate your saying that, because as legislators it's our responsibility to look at the family circumstances as well as the rights of the client. I think that's often missed in the decision-making process. I think all three parties -- mine started with the deinstitutionalization plan -- are somewhat guilty of not taking into account the needs of families. I hope that is changing in our attitude around here.

Ms Allingham: I appreciated your term "utopian," because that's exactly the way we view this. Deinstitutionalization had some good points to it: Some of the early people really shouldn't have been in the institutions. They should have a chance to try. Some of them have done well; some of them have not. But I guess that's life.

However, we are down to the people who really would find it very, very difficult. I try to talk to these people, and they seem to understand what I'm saying. But I have a great deal of trouble and they get rather frustrated with me: "Why don't you understand?" But they're happy. They seem to have a bond with each other. They can relate. They understand each other.

We feel very strongly that if you are thinking of their happiness, they are happier making their own bonds than being overpressured. We have many cases where somebody has said: "This person is doing very well. We'll take them and put them here, and they'll do better." There is a limit beyond which they cannot go, and when you push beyond this limit, you have behaviour problems.

Mr Wessenger: I think Mr Hope has a question. If there is time, I will go to my question.

Mr Randy R. Hope (Chatham-Kent): I would like to refer to page 3 of your presentation, when you said, "Therefore, in reading the amendments to Bill 101, we would direct particular attention to the following," and you indicated the powers of the placement coordinator, quality assurance plan, inspection provisions and funding. Then you went on to the issue about the profoundly handicapped. Could you be a little more specific in what you're saying in that area? You made reference to the waiting list of 2,500, I think it was.

Ms Allingham: We felt that when this bill came out there was really no recognition of our people, no distinction between disabilities. There has been no distinction between a person who is in a wheelchair but who has all the mental capabilities, and our people, who have many other health problems. We also have a lot of wheelchair people, and in Huronia there are tunnels and halls and these people love going along them. Put them in a four-bedroom home and how far can they go in their wheelchair? Basically, it was the fact that we felt there was not a distinction made that our people had specific profound disabilities. Does that answer your question?

Mr Hope: So when you're looking at the quality assurance plan, you're looking at the multiple disorders that might be there and making sure they're accounted for in the quality assurance plan, if I'm understanding you correctly.

Ms Allingham: Exactly. You've got it exactly.

Mr Wessenger: I would like to follow up, just to be clear in my mind, with respect to the matter of how this bill and long-term care facilities relate to your concerns about the developmentally handicapped. Is it fair to say that you feel there would be some difficulty in integrating many of the developmentally handicapped who are elderly into long-term care facilities, and that you think that should be looked at as separate types of facilities for them? Is that what you think is appropriate?

Ms Allingham: Yes, because the health care of our people is different from the general population. They have specific problems, and the treatment for these people is different. Orillia Soldiers' Memorial Hospital has figured out certain things that work with these people which are different from what is to be done for the general population; in other words, the treatment for the general population might not be satisfactory for our people. We feel that the health care is very important. We feel this is a specific field of health care.

Dr Alan Bruce-Robertson: For instance, at Soldiers' Memorial, by reason of its proximity to Huronia and the frequent referrals to it, but also with the help of the staff who are now going to be dissolved, the medical staff at Huronia -- people who are in contact with the mentally retarded all the time, the developmentally handicapped, begin to appreciate that certain things that to an outsider appear like a behavioural disturbance are really not, because they know that person and they realize that this is something different. It could quite easily be an abdominal emergency.

We had a very good example of that from one of our members who is a surgeon and who realized that what they were telling him about his son was abnormal and not the way he reacted, and he insisted that they look into things further. They found that he did in fact have gallstones and was getting colic from these. But this went unrecognized for weeks, simply because he was being seen by a practitioner who had no understanding and who just said, "Sedate him or do something with the behavioural problem." I don't myself understand it: If he'd laid hands on his abdomen, and with a stethoscope and a few other things, he should have picked it up. But the manifestation of disease is sometimes somewhat different in the developmentally handicapped because of their disability.

Mr Wessenger: Basically, what you would advocate is that there has to be specialized services available for the developmentally handicapped.

Dr Bruce-Robertson: They will fare an awful lot better.

The Chair: Ms Carter, there's time for a short question.

Ms Jenny Carter (Peterborough): It seems to me that in Bill 101, there is provision for people to get the help they need. They are to be assessed, hopefully to have some share in their own assessment, and be allocated according to that. So I'm a little puzzled as to what the difficulty is here, because if they have the problems that your people have, then I would presume they would go to suitable facilities or remain where they are if those facilities are already what they require. Also, I understand there's an annual update on people to make sure they still have the same requirements.

What I'd like to ask you is, is there something you would suggest we could add to the legislation to clarify that this particular group of people is included in what is there?

Ms Allingham: Yes. These people are in care right now. We are told by the Ministry of Community and Social Services that long-term care in the institutions will be closed; this will be taken away from us. From what we can gather right now, there is plenty of evidence that proper care is not available in the community yet, so we are really asking that our institutions not be closed. At every institution that has been closed so far, there have been some people left over who they have sent to another institution. What is going to happen?


Our parents are very much in favour of the policy outlined in item 9, which started out as transitional homes on grounds, but it is a group home idea: They get family-style living, but they have the central services. We feel also that this would be more economical. The ministry has found that it has not met its quota in taking developmentally handicapped people from the nursing homes and placing them into the community because of costs, which in many cases are twice what it costs to keep them in the institutions. What we're really asking is, please don't close all our institutions. They're not the bad places they used to be many years ago.

Ms Carter: I think it's obvious that there are some people who will always need that kind of care, and it has to be provided.

Ms Allingham: This is what's worrying us.

The Chair: Ms O'Neill.

Mrs Yvonne O'Neill (Ottawa-Rideau): I thank you, really, from the bottom of my heart for coming. We had the minister with us yesterday, and although we do not have Hansard, I'm very sorry to tell you that she did say that Bill 101 does not include your residents. She talked about some kind of other project and some funding attached to that. When we get Hansard, I will certainly send it to you. I know you've been through the round table discussion process, and I know you feel you don't fit in there either.

Ms Allingham: That's correct.

Mrs O'Neill: There's just a great deal of uncertainty surrounding your situation. I can't believe that people who have been in care since the 1970s -- you've suggested that -- and longer are not considered long-term care residents. I just can't understand that. In my mind, they should likely have been the beginning of the project because they have been there the longest, their continuum of care being the longest.

It was a group such as yourselves -- I'm not sure whether it was you or another centre that brought to my attention for the first time the Facilities Planning Project; I didn't have the document. I think you picked out a key phrase this morning when you talked about "sole model of choice," because if you look at any dictionary, the word "sole" and the word "choice" have absolutely no relationship to each other.

Ms Allingham: We know.

Mrs O'Neill: When you then suggest that there be models on mental health and corrections, particularly the corrections side of it -- it is almost offensive.

Mrs Rowe-Sleeman: It blew our minds.

Mrs O'Neill: There is absolutely nothing that has been done in your situation, that I can see, that takes either parents' or residents' choices and attends to them in this particular set of discussions. I feel perhaps it's because of the transfer from Health to Community and Social Services. Maybe there's been some delay in understanding, but you've been as clear as you could be in your presentations, and I thank you so much for that.

Really, I would just like to add that the group home situation is maybe even worse than people around this table realize. In my own community, there have been only five admissions to group homes in the last two years, and they have only been because the parents have either died or have contracted serious illness. The others are struggling along, and the commitment even to respite care is not there any longer.

I really have no questions for you. I have spent a lot of time with several of you and people in your situation across this province. I am just going to continue to try and present your case, because I really feel very strongly that you have to be included in the long-term care.

Ms Allingham: We sincerely thank you for your understanding.

The Chair: Doctor, did you wish to make a comment?

Dr Bruce-Robertson: Just two quick points, one to Mr Wilson in regard to something he said. I think the present attempts at integration with the community overlook the societal aspect of things, that is to say, the desire of residents or the handicapped to see one another and not have their nearest friend kilometres away. I think this is a very important thing, from my own work in the community with such people. That's the chief point.

With regard to your question about why we don't get this expertise when we need it, some of this expertise is really concentrated in our schedule 1 facilities, or has been, and I don't think it's available generally in the community. I say this with all regard to my colleagues, many of whom, in centres we have visited, don't wish to deal with the developmentally retarded for a number of reasons.

The Chair: Thank you very much for --

Mr Jim Wilson: May I just have a brief sentence to respond to that?

I just want to make sure, doctor, that you understand that what I was trying to impart to you in my remarks is that my caucus colleagues and I do understand that. I appreciate Mrs O'Neill's comments with regard to her party's position because, as I tried to sort of do a mea culpa, we got on this deinstitutionalization trend and I think both parties have come around to having a much better understanding over the past seven years regarding the needs of families such as yourselves. Our challenge is to ensure that this government understands that and that policy is changed in that direction.

The Chair: I want to thank you very much for coming before the committee. If the Chair may be allowed a personal note, a few years ago I had some responsibility for Huronia, among other institutions, and had the pleasure of meeting with the parents' organization from around the province. I just want to underline that the commitment that you had to your family members and to their welfare was always very clear to me. We thank you very much for coming before the committee today.


The Chair: I now call upon the representatives from the Ontario Council of Hospital Unions. If you would be good enough to come forward and take a seat and a glass of water and if also you'd identify yourself for Hansard.

Mr Steve Eadie: My name is Steve Eadie and I'm here representing the Ontario Council of Hospital Unions, in which we represent 19,000 hospital workers right across the province. I'd like to begin by thanking you for the opportunity to be here this morning.

We want to address and talk about the deficiencies of Bill 101, not alone, but also to speak to the larger context of which this bill is a part, and that is the government's attempts to massively restructure long-term care in this province.

This restructuring, which the government refers to as a reform, has been taking place bit by bit and piece by piece over the last several years. 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 part is vitally linked to the other. Close down chronic care beds and there's 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 becomes absolutely essential.

The reality is that long-term care is a comprehensive system, yet here we are once again examining only a small piece of the massive overhaul, and that is 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 complete restructuring that's taking place.

Our union has extensive experience dealing with health care policy, and we can say with regrettable certainty that at the end of the day when all the 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 for the worse in Ontario. In a few years what we will call long-term care will represent a radical departure from what we now have. 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 service and security to patients and their families.

There has been a fundamental shift. Almost by stealth, this government is reforming and reshaping the system of long-term care. Underlying the initiatives in long-term care are three themes or principles that are shaping the policy directions in health care delivery and that mark a shift in ideology and approach.


First is the idea that there is something inherently wrong with publicly run hospitals and other public institutions. I would just like to say that we agree with the last speaker. What I heard when I came in was that there is nothing wrong with institutions which can't be changed or reformed, and we support reform of those institutions to make them accountable and democratic. That the quality of care is inevitably better when it's provided in something called community-based services or when it's given in a patient's home is not necessarily the case.

The second, and related, idea is that individuals must bear significantly more of the burden of caring for themselves and their sick relatives. In fact, this concept is elevated to not only being a necessity but a positive virtue.

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 our 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 the provision of service and basic levels of care that consumers can expect.

The bill sends an unmistakable message that consumers had better not look to the province for any meaningful enforcement of standards, that they have only themselves to rely upon. In addition, it exposes a government that has given up on the idea of a non-profit, public administration of health care.

The bill does require the posting of service agreements; that's true. But what happens if there's an infraction or the home does not meet certain standards? There is absolutely no protection for whistle-blowers, nothing that empowers residents and allows them to act on their own behalf and in their own interests. Do we really expect residents to take on the government bureaucracy and the management of the home from their wheelchair or their bed? It is precisely the residents and the employees who can monitor the agreement better than anyone else, and it is imperative 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.

In addition, there is absolutely nothing in this bill, or in any government initiatives that we know of, that deals with issues of democratization.

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 essential to make these facilities more accountable to the government, the residents and the people they serve. Legislation governing nursing homes and homes for the aged should be amended to provide for democratic governance structures.

Between 1976 and 1989, 7 out of 10 provinces reduced the number of private nursing home beds, but in Ontario the percentage of private beds increased from 47% to 54%, making this province by far the largest supporter of the private sector in the delivery of extended health care services.

In addition, 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 absolutely opposed to this funding plan. It will further entrench and enrich commercial nursing homes at the expense of homes for the aged. We need a conversion strategy to turn for-profit nursing homes into publicly owned not-for-profit homes, not a policy that makes the commercial sector more viable. 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 and not to make the owners of those homes wealthy. It will also mean the loss of 1,500 jobs this year in homes for the aged. 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 must be expanded to include all workers in the system. Additional and sufficient money to fund retraining programs must be made available and there must be job guarantees for workers who are being laid off as a result of this government initiative.

For-profit care is inferior. Through long and bitter experience, we have found that the quality of care in for-profit nursing homes is generally inferior, as are workers' wages, benefits and working conditions.

Moreover, we 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's residential services branch changed its system of inspection from one based on enforcement to one based on 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.

The 1990 Provincial Auditor's report pointed out the flaws in the current inspection and compliance system. Here are some of the findings:

-- Over 40% of homes did not receive any visits in addition to the annual licence renewal. Additional visits are important to ensure that standards are met throughout the course of the year.

-- Homes were not being referred to the enforcement section for further monitoring and investigation.

-- Long advance notice of licence renewal reviews could allow a substandard home to temporarily comply with requirements.

Our experience with the new compliance system is that it fails as an approach. For example, in 1984, 20 homes were charged, 497 charges were laid and 117 convictions were the result. In 1989, a year after the ministry changed its system of inspection, no homes were charged, no charges were laid and obviously there were no convictions.

It's our suggestion that tougher rules are required. 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. Ministry contacts recently told CUPE that the Nursing Homes Act and regulations are not fully enforceable as a result of previous court decisions.

These technicalities, however, do not let the ministry off the hook, in our mind. If the act requires amendments, this should be rectified as soon as possible. We've wasted too many years dealing with a toothless piece of legislation.

Finally, Bill 101 calls for residents of nursing homes and homes for the aged to be assessed and a plan of care developed to meet their requirements. We have 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 facilities is determined. 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 residents must have input into the patient assessments. The ministry should require employers to seek and incorporate support staff recommendations on resident care. Assessments should be done on an as-needed basis when the medical condition of a resident changes or deteriorates or, at a minimum, on a more regular basis. The case mix index system must be revised to reflect actual staffing case loads.

Our population, as we all know, is not only growing but aging. Bill 101 and the wider government initiatives on long-term care and acute and chronic care will have an enormous impact not only on today's senior population but on the generations to come. Close to one million Ontario residents are between the ages of 55 and 64, and there are over one million people 45 to 54. The massive restructuring of long-term care that is taking place now has everything to do with the level of service, care and support that these people can expect to receive. But the shape of it, we find, is unmistakably and alarmingly flawed and will set us back.

We don't have to wait long to see the really adverse impact of government policy on health care. Even now, hospital beds and services are 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're told not to worry, that community-based services will fill the void. I note that the previous speaker referred to the void of community-based services. We don't see these community services being created, and we don't see the replacement of programs that are being cut from hospitals.

In fact, as part of long-term care reform, the government has committed itself to transferring $37.6 million a year from the provincial hospital budgets to community agencies to beef up home care. But I ask you, where are these agencies, where are the equivalent services and what is the overall plan? When will they be created? The cutbacks that have taken place in our public institutions are only viable in the reality of a comprehensive home care service, a service that does not exist.

Clearly, the language of reform the government and bureaucracy have been using is simply a cover for budget slashing and cost cutting. The Ministry of Health appears to have forgotten the terrible lesson from the 1970s, when mental health care was supposedly shifted from hospitals to community-based services. While hospital beds were closed, the necessary services never materialized and patients were left to fend for themselves on the streets.

Here we go. The disastrous mistake of the 1970s is in the process of being repeated.


There is money available within the health care system, and there is waste throughout the system. Many organizations, including our own, have painstakingly spelled out on numerous occasions in numerous forums the crucial areas where substantial savings can be realized.

We have pointed out time and time again that huge 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 submissions with respect 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. Moves towards democratization in this sector would go a long way towards containing costs.

Many organizations have pointed to the additional millions that could be saved annually by reducing waste and inappropriate utilization in the $1-billion Ontario drug benefit program. The government's own program for drugs for seniors is one of the most serious causes of ill health among older people.

Moreover, the existence and growth of for-profit service providers and commercial operations 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 big emphasis on community-based services. At present, many services provided through public health units and home care programs are contracted with private medical companies, such as home nursing services, homemaking, oxygen therapy etc. For example, the home care program for Metro Toronto subcontracts a variety of home care services to more than 20 privately owned companies.

The rapid expansion of the private sector into home care causes us concern. In 1978-79, the number of hours provided to Ontario residents was 82% non-profit and 18% commercial. In 1988, the ratios had shifted to 62% non-profit and 38% commercial. At a recent CUPE health care conference, the Minister of Health, Frances Lankin, stated that the ratio is now closer to 50-50. Obviously, the increase in the commercial sector has been at the expense of the not-for-profit sector.

These suggestions for cost saving within the system have not been kept secret from the government. Many organizations and unions have emphasized them again and again. But today, again we ask the question, is anybody really listening to the suggestions we're putting forward?

We tend to doubt that. It is in fact mind-boggling 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. Why are these crucial components of the health care system, the ones that people depend on the most, the first to go?

While the government is complaining about rising costs and is shifting some of the financial burden on to residents through user fees -- in fact $150 million to $200 million a year will be raised by increasing user fees to residents in nursing homes and homes for the aged -- it is ignoring other areas where substantial savings could be realized without sacrificing the quality of care.

We suggest that the pace of the profound changes be slowed dramatically and that before the continuing reforms are brought in, we all be allowed to examine them for the reasons I've outlined, such as that the community services are not in place. There are urgent and compelling reasons to stop this so-called reform until all the systems are in place and until the public has had a real say and more than just a token consultation.

When we examine 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 services and care, more warehousing of the elderly, more nickel and diming.

We, all of us, deserve a better health care system than the one we're headed towards. It is, after all, our lives and health that are 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. The government clearly needs more space and time to come up with a workable approach that can meet our health care needs in the decades to come.

The Chair: Thank you very much for your presentation. We'll move right to questions.

Mr Drummond White (Durham Centre): I want to congratulate you on your presentation and the thoroughness of it. There are a couple of things I wanted to pick up on. As we know, CUPE represents many workers in the hospital sector, but you also represent most of the organized private for-profit nursing homes, do you not?

Mr Eadie: We represent approximately 40,000 members overall in health care, 19,000 of whom are hospital workers, which is the group I'm from.

Mr White: But the majority of the organized nursing homes would be organized by CUPE.

Mr Eadie: That's correct.

Mr White: So when you speak of the issues that you do here with regard to the commercial sector and with regard to the issues about not-for-profit centres, some of your own members would be working in the for-profit nursing homes. As their voice, you are saying that care is more appropriately done, more appropriately offered in a community-based, not-for-profit centre?

Mr Eadie: What we're saying is that we abhor the move to more privatization in those homes.

Mr White: I'm curious. One of the rationales that's being offered is the issue about the inspections, the quality care agreements, those kinds of things. You seem to be very critical of the inspection mechanism.

Mr Eadie: That's right; yes.

Mr White: Has there been any involvement of hospital workers with regard to inspection?

Mr Eadie: There's a feeling of fear in the institutions and in the homes; not to be involved in the whistle-blowing because there is no protection for people who get involved in making those types of assessments. What we're asking for, and what I hope I outlined clearly here, is that we would like legislation to provide protection for people who do these kinds of assessments which would be critical of these homes.

Right now, people need that job and don't feel they can come forward with complaints they might have about it because they don't have the protection. That's one of the aspects I wanted to make clear.

Mr White: If the inspection system was changed, for example, so that at the provincial level there was representation from the affected workers' groups, such as CUPE, and there was whistle-blowing legislation which would protect people in the for-profit centres, if they speak of the concerns they have, then that would ameliorate some of the problems with the inspection system.

Mr Eadie: Yes, we believe so because those people are intimately involved. The people who work there are intimately involved with the necessity of the level of care and how the operation is being run.

We find this all the time within hospitals as well, that the people who do the work on a daily basis and understand the operation intimately are not consulted as to how improvements might be made in the delivery of care, and that's what we'd like to see happen.

Mr White: Have you made those recommendations to the minister?

The Chair: I'm afraid we're going to have to move on to the next questioner.

Mrs Sullivan: Thank you very much. As you may suspect, we have some points of agreement with some of the points you've raised in your brief and we profoundly disagree with some of the other ones.

I'm interested in the argument you make that the assessment patient classification should be done more frequently than annually to alter the staffing case load requirements. We discussed this with the ministry yesterday with respect to altering the funding, which of course has an impact on staffing capability. The Ministry of Health officials indicated that statistical data show evidence that an annual basis for testing and assessing patients in terms of the overall care needs within an institution provides a realistic approach with respect to stability in funding requirements. I think that will be one area where we will ask Ministry of Health officials for additional information, as you have raised it in your presentation.


We are also concerned about the level of enhancement of community-based services that you have raised, as institutional care is being restructured, and we have raised that.

In my view, witnesses before the committee must be extremely responsible in the charges that are brought to committee, and I would be very interested in knowing what data you have that support the argument you have placed on page 6, that "the quality of care in for-profit homes is generally inferior."

While you're thinking about that I'd also ask you, what additional capital requirements do you think would be placed on government were there no for-profit or commercial enterprises involved in the long-term care, ie nursing home sector, since the private sector is of course providing the capital for those facilities now, which would otherwise become the role of government?

Mr Eadie: To deal with the first question -- I might have to get you to repeat the second question because that sounds like a tough one -- I don't think the first one is very difficult to answer at all. Where do we get our information from? How would we verify that? We would verify that through having a full inquiry, which we asked for two years ago, into the health care system, and particularly into the private nursing homes, and by having people such as yourselves make the effort and take the time to go out and talk to some of the people who receive care in these homes and some of the workers who are struggling to provide that care, because they will tell you face to face, as they have told us, what the level of care is and what they are attempting to do within those homes. They will tell you the stories they tell us, which for them are not anecdotal, but a part of their daily lives.

That's where we get our information from. There has been a far more comprehensive brief compiled by CUPE which indicates some of those particular problems, which has been sent along to the government, on all the questions of health care. So that's how we verify that. We're happy to talk with anyone further about it, but that information comes directly from people who are involved in the health care system.

Now your second question was regarding capital, I believe, and maybe you could just put that to me again.

Mrs Sullivan: The private sector's involvement in the nursing home sector has eliminated the need for capital infusion from the taxpayer base for the building of and expansion of nursing homes. In the public sector base, it's the taxpayer who supplies the capital requirement. What additional costs do you think would accrue to government were there not the capital infusion from the private sector?

Mr Eadie: That's a good question, and I think you know I don't have the answer to that. If we're going to make a health care system that works, we have to look at, first of all, where we can find moneys within that system. Now, I don't know how much it would cost, but I have a question that I'd like to ask you.

How much do you think we could save if we chose to have a system where the doctors were on salary and we made institutions accountable so that we could monitor the money they were spending, not only on their salaries but on other things? That, I think, is a really substantial question that we have to start addressing so that we can move some of that money into what you're obviously saying would be a very expensive proposition.

But you see, within the health care system right now we don't know what money is available to do what with, because nobody's saying because there's no system of monitoring it.

The reforms, as they're called, that are happening are happening with people who make $30,000 a year and provide front-line services for doing that. I think there's a problem when we just start talking about how much money it would cost. Well, how much money do we have?

I want to make just one more point on that, and that is that I don't think we're suggesting there be an immediate move tomorrow to change the private nursing homes over to public homes. What we're suggesting is that there be a stop on the drift towards the private sector within these institutions and within the provision of health care generally, because I think what you're seeing in the United States is interesting. One of the fastest-growing industries there, and one of the fastest growing industries in Canada, is the provision of health care, the services involved with health care. I don't think we want to be moving in a direction where health care is privatized. I can't tell you how much it could cost exactly, but I can tell you where some of the money could come from to defray some of those costs.

Mr Jim Wilson: Mr Eadie, it'll come as no surprise that, on behalf of my party and the PC caucus, I profoundly and adamantly disagree with your attack on the private sector, while I do mildly agree with some of your comments regarding the void in community-based care.

One of the reasons I disagree with your wanting to shift, I gather on a gradual basis, health care totally towards the public sector is that I look at the day care experience here in Ontario, where the government is spending more than $100 million -- I'm being kind by saying that; it's closer to $200 million -- over the past little while and over the next year simply to drive the private sector out of operating day cares.

You claim there are huge profits being made in the community-based, private sector nursing homes, for instance. The nursing home operators I know don't make huge profits; the same with the private operators of day cares in my riding. In fact, they made a far larger salary when they converted over to a non-profit centre and became executive directors and paid themselves huge salaries, far more than they ever made in operating the day care in a place like Stayner in my riding.

That experience has not been a good deal for taxpayers. The government's spending over $100 million. That money doesn't give you any more spaces and it doesn't give you any more subsidies, where we know the real demand is.

When we hear this sort of attack on the private sector, I'll tell you, in my riding my taxpayers hold on to their wallets and duck for cover. The term "not for profit" I think is misused. It's an insult the way CUPE uses it now in presentations to committees, given that we have a lot of legitimate, long-standing, non-profit organizations and charitable homes for the aged, for example, that do a tremendous job in the community.

Just to be clear and on the record, my party firmly believes, and we think the history of Ontario shows, that a proper mix between the private sector and the public sector in the delivery of health care services and in the nursing home sector is vital to this province.

Frankly, I think you should be coming to this committee -- and I'm surprised you haven't patted Ms Lankin on the back. She's doing your bidding for you in parts of this legislation. Again in this legislation we see the government's preference for the not-for-profit sector in terms of capital funding. There's a bias in this legislation, and you've not pointed that out in your bidding at all. The minister has very clearly put the government on record as moving in the direction of the not-for-profit. In fact, nursing homes and private operators have come to us very much worried about the direction and bias contained in this legislation.

Having said that, I agree with you that the deinstitutionalization dividend, the money that's been saved, theoretically anyway, in closing some 5,300 hospital beds in this province, has not been transferred into community-based services. Where we've seen the government in this legislation try and put money into the nursing home sector and the homes for the aged sector, we find that, as you mentioned, $150 million of the $200 million that's promised comes in the form of user fees.

I want to ask you about user fees, because I think my party was inaccurately portrayed in the last election as being in favour of user fees. In fact, our position was that we wanted to spark the debate and not continue the fallacy that there aren't user fees in our health care system now, in many areas in the health care system. Is it not an about-face for the NDP to now be coming in with $150 million worth of user fees when it campaigned against this in the past and when CUPE was solidly, I believe, on side with the NDP in the fight against user fees? I'd be interested in your comments on that also.

Mr Eadie: First of all, I want to say that I certainly respect your opinion when you talk at length about the issue of privatization. We obviously don't agree.

On your question about user fees, we do not support user fees. There is an entrenched use of fees within this part of the health care system, and I think I was clear in my brief that we oppose the increase in that.

The Chair: Thank you very much for coming before the committee and for your presentation.



The Chair: I'd now like to call on our final witness for this morning, Ms Dian Goldstein. Welcome to the committee. I believe your brief has been handed out earlier; in fact, I think there were two documents you submitted to the committee. Please go ahead.

Ms Dian Goldstein: Mr Chairman and members of the committee, thanks for allowing me to come this morning. I know you have my briefs before you.

In 1982 my parents became involuntarily immersed in the health and social services system, and I was necessarily drawn in at that time. Attempting to advocate for and help my parents find appropriate quality services, I endured experiences that I would like to forget. I am here today as a former care giver for my mom and dad.

The abbreviated personal story that you have indicates that my parents lived in a chronic care facility. Written research, as well as the observations of both professionals and non-professionals alike, indicate that those people who live in chronic care have needs not unlike those residents in municipal and charitable homes for the aged and nursing homes. In fact, it is my opinion that chronic care hospitals should have been included as part of this Bill 101.

I'd just like to read a little bit about my story, seeing as I am here as a care giver. For eight and a half years I advocated on behalf of my parents. As you can see, the first part of my story indicates that I was really lucky in an acute care facility, because I had people on the floors who provided not only excellent staff but communicated effectively with me, and family was really part of the team.

Unfortunately, when we moved to the chronic care system, it was a different kettle of fish. From the first day of admission, I felt like an intruder. I was not part of that private club. No one offered to talk to me much, nor did I get any specific answers when I asked questions. No one wanted my help, the way they had in the acute care facility. Although a social worker did speak to me and my father and did take a full history of my mother, that information remained right in the social worker's notes; didn't get out of the writing, not into the people's heads.

During the entire six and three quarter years that I spent in that facility with my mother, the doctor, for six and three quarter years, never referred to my mother as "your mother, Mrs B, Vera" or any more personalized term. My mother lost her name. She was "this lady" for all intents and purposes for all that time.

I did go to family meetings regularly, but unfortunately, just describing my first meeting will set the precedent for the entire rest of the time I was in this facility as a care giver to my mother and to my father, who ended up there eventually. When I did mention that no one communicated much, seven people around the table said things like: "I don't know what you're talking about. We all talk to your mother at length. Your perception is wrong." I was feeling a little intimidated, but then I said, "But I thought this was going to be her home." The doctor replied: "This isn't her home. We could ship her out any time we like."

Talk about devastation. The meeting was not meant to help me. It was meant to intimidate me, to keep me quiet and make sure I didn't rock the boat again or they would get rid of my mother. I was to believe that the professionals' knowledge was accurate, correct and important and that my knowledge and experience was not valid, nor was it to be believed. If this was what they called team playing, I was not on their side of the field, and they never intended that I should be. The feeling of being demoralized, diminished and demeaned was everyday fare for me. I never left the facility without crying.

My dad died in 1988 and my mother died April 1990 and I am just now beginning to put this humiliation behind me. I would like you to know that my experiences are not at all unique. I am sort of on a grapevine of telephone messages now, and people who know that I have suffered through this and that I have been involved in advocating for the elderly in institutions for years call me with regularity, and I can tell you that I get these kinds of calls all the time. What I have shared with you is really quite minimal.

There's been very little research, unfortunately, for families or representatives of the institutionalized elderly. It's really as if we're not there. We're unnecessary appendages, and I'd like to recommend -- and I think they may be considering it, although without any regulations in the act or anything specific in guidelines, I don't know what it is -- a family plan so that when there are families or representatives who want to be involved in care, there are meetings -- and not just the resident care plan, which is discussed in the act regarding nursing and personal care; I mean family plans, family care, how the family can come to a facility and help in any way they want, which is in working with what is happening at the facility. I sure didn't have that.

One of the main things I want to bring up today as a consumer is the information to the public. May I tell you that it does not exist. The people who call me -- and many other people I know who are concerned about these issues -- talk about the difficulty the public has in finding out information. It is not available, and when you do find someone to talk to, you don't hear much important information. It's all kept kind of secret and under the rug. The public must be notified about non-compliance with the acts and with the regulations and, as well, the actions or sanctions taken by the government and if -- I repeat, if -- any enforcement has taken place.

I noted with interest that the gentleman before me from the union also mentioned about the inspection system being flawed and that tougher rules are required. I suggest, as he mentioned, that you do read the auditor's report from 1990. There is not enough in this act about sanctions and enforcement and notifying the public. I think that lists of facilities that have had violations should be printed regularly in the newspaper so that the public can see it. I'll tell you something: I'd even offer to pay for it for the first couple of months if that's the problem.

I think these lists, including the violations, the sanctions and the enforcements that should follow it, should be sent to advocacy groups around the province, to discharge planners in hospitals and to the newly discussed, comprehensive multiservice agencies.

I can tell you that I have spoken to a discharge planner who did not want to recommend or had told a family not to go to a particular nursing home. The nursing home found out. The nursing home contacted the administration at the hospital, the hospital put their hands on top of that discharge planner and that discharge planner kept her mouth shut. So that's how the system works. We can't recommend which facilities, but let's put the facts out. Why shouldn't it be in newspapers and why shouldn't discharge planners know about it?


People who do this "placement," which is another word I find inappropriate, don't even know about facilities; they've never walked into them. There should be bimonthly reporting, as I said, in the newspapers, but it must be made clear which homes have the fewest violations and which homes have the most violations. How can the average consumer measure the care that is given if he doesn't know that?

We also heard from the gentleman before about employees being afraid to speak up. I can tell you that residents and family members are terrified to speak up because they know their family member will certainly receive some sort of reprisal or some sort of negative behaviour. Not that we consider our facilities hotels, but every hotel room you walk into has a little card that asks: "Are you satisfied? What would you like to see improved?" Why don't we have little cards in these facilities sitting in the hallway -- not necessarily in each person's room so they'll know when it's gone and who sent it in -- for any family member or fire marshal who goes in or even the consultants themselves from the ministry who might be afraid to say anything about that facility because they might be in cahoots with the administrator? Let's have anonymity in being able to complain by sending in cards to appropriate people: to you, to the residential services branch, to the people in the Ministry of Health themselves. We've never had the compliance adviser's or inspection telephone numbers or the doctor's number on the wall because, again, it's one of the world's best-kept secrets.

About the Advocacy Act: It was passed here December 1992 on third reading, and of course the purpose of this act is to assist vulnerable people, and there are 60,000 of them sitting in nursing homes and homes for the aged. They're vulnerable. Why are they vulnerable? Because they're dependent on the institution, and anyone dependent is vulnerable.

I'm very disappointed, although the acts seem to cross a little bit, that there isn't evidence in Bill 101 of the Advocacy Act. They really must be interconnected so that an administrator can call an advocate if necessary, and in fact she should be mandated to do that if she sees things that aren't working well in that facility. If she doesn't, there should be a sanction as to why she doesn't to make sure that she or any staff member does, because many residents don't have access to the outside world or telephones or families.

There are statistics that 40% to 70% of people living in these facilities don't have anyone to come and visit them. Therefore, if the staff doesn't assist them, who will? We just can't put it in there that the staff should or the administrator should, because the resident or the family member will be afraid. There should be a sanction if they don't call, and I really reiterate that I think there should be some connection.

Although I was very pleased to see that adults with a physical disability will receive direct funding to purchase services of their choice, I was extremely disappointed that the act does not specifically include those over 65. The message is that seniors and care givers are not responsible, yet the literature shows that they do not take advantage when they're given extra services or extra money. Tell me, is justice served when younger disabled adults can have someone manage and purchase services for their care but seniors can't? This is agism at its worst.

There are many issues about the appeals and the coordinator. As I said, "placement" is sort of an inanimate word. Can we not call them "coordinator for new residents" or "accommodation coordinator"? Of course, I have about 12 things about the appeals. If someone is refused admission, they have to wait an awful long time to apply again. If the coordinator points a finger and says, "Yes, consumer over there, resident, you go to ABC nursing home," but my family doesn't live at ABC nursing home, and besides, I was a diligent consumer and went to the nursing homes branch of the ministry and went to the library and saw that ABC nursing home had an awful lot of violations and I don't want to go there, I don't see any appeal for that.

I would like to draw your attention to appendix A. These are compliance review reports. This is the yearly annual licensing when the compliance adviser goes into the facility and they find if there is any non-compliance with any of the regulations or the act.

On the first page here they don't call it violations. Do you know what they call it when they find something wrong? "Findings." "Findings" in a sense to me really devalues what they have found. Let's look at the word "theft." When someone steals something, do we say, "He was found that he took a car"? No, he was a thief. And when you have a finding where someone has been sitting in faecal matter for 10 hours, that shouldn't be a finding; that should be non-compliance. That's a violation of the act.

When you turn over and you look over here, you see "unmet criteria outstanding from February 26 and February 29," and this is in September. Were there no sanctions applied? Were there no follow-ups applied? It's over six months and they're still in non-compliance with the regulations. I find that very distressing that there haven't been any sanctions.

I have a number of things to say about sanctions, but I see that my time is drawing to a close. I would like to just mention one or two other things, although I do agree with the gentleman that the sanctions have to be very clear and that there should be an outline of plan for correction for every facility when a facility is found in violation. After an immediate sanction is imposed for a violation, there should be guidelines listing how long a facility can have to correct that problem before we have an incremental sanction or a more severe sanction.

On the next issue of the residential services director, I guess you're aware that there's a round robin of people in charge at the residential services branch. We have had a rotating director now since August 1992. I just wonder how an entire department of staff serving thousands of residents cannot have a stable director. It really gives me the feeling that residents in long-term care facilities aren't that important, and once again old people in institutions come last.

About students learning in community colleges and universities: I have spoken to a number of teachers, people who are learning to become health care aides, registered nurses, activationists, registered nursing assistants. At school they might learn about residents' rights and basic care and resident autonomy, but often the reality in the institutions is the antithesis of the subject matter in the classroom. Students get two messages. They see and hear abuse and recognize violations; they return to the classroom and both the teacher's and the students' hands are tied. The teacher's hands are tied because if she complains about what the student saw, she may not be able to have her students in those facilities and she may be blackballed, and her students have to get out there. If the students complain -- they're starting out on a new career. Why do they want to complain, when they might be blackballed and never get a position in the new career of their choice?

I think that facilities that have very large numbers of violations -- not "findings," but violations -- and are in non-compliance with the act shouldn't be allowed to be facilities for students to do their practice work in. I think that should also be listed in the newspapers and the public should be aware of that. If there is any real commitment to improving the quality of care, one cheap place to start is with new students: not let them go to those facilities, and provide good role models for them.

That's all I'll put in my brief this morning.

The Chair: Thank you very much. I think I would be expressing the view of the committee if I said we regret very much the reasons which have led you to take such a strong interest in the whole field. But that having happened, we appreciate the fact that you've come forward to the committee as an individual to make your presentation.

As Chair, I would just note that in one of your documents you indicated how some people would feel intimidated about coming before a committee. Perhaps I could say to you that while the witness list is set, in terms of people who might wish to send in, through writing, comments about situations or their own views, those are certainly accepted and we would encourage that to happen.

We have some time for questions. I'll be calling upon one person from each caucus, and I would ask you to be to the point. We'll begin with Mrs Fawcett.


Mrs Joan M. Fawcett (Northumberland): Thank you for coming before the committee. You certainly have painted a picture that possibly we would not even realize in so many cases is out there, and yet we do hear of similar things. It is unfortunate, your eight and a half years witnessing the care givers and possibly what wasn't there, and we do sympathize.

I guess I would like to know whether you feel, then, that there is a place for institutional care. Obviously you haven't had the best association with it, but do you feel that there really is a place? Certainly your comments around the placement coordinators and the lack of choice we agree with wholeheartedly in that we want to see that there definitely is that choice and we are worried that this is not going to happen, although we were given some assurance by the ministry that what we believe and what is in the legislation is not what the ministry intended. But we would certainly want to see proof of that.

You went on at great length about the involvement of the family and what you would like to see and the changes you would like to see around the involvement of the family. How would you see the service agreement including the family so that everyone can be assured that the best care is being given?

Ms Goldstein: To try and address all of the issues: First of all, if it was up to me as an individual, I would like to see total deinstitutionalization. I would personally like to see alternatives in place of institutionalization such as group homes, apartments that have four individual people in each particular apartment, or a congregate living area where you may have one floor for chronically ill people who have separate bedrooms off that one floor and maybe have a congregate dining and living area in the centre. Let me tell you that there are some people who have told me they want to live in an institution rather than be in their own home because they don't like that isolation. But they could have that in the congregate kind of environment with the alternatives.

In terms of the community-based services, although we haven't seen the comprehensive legislation on that as of yet, I am extremely concerned that the monitoring and the enforcement that I discussed in institutions will also be not in place for people in their homes. Right now I know case workers who survey 60 homemakers in the homes and there is no one who goes to monitor what the care is. Is there any abuse? Are things being done? Do they leave an hour early? Do they shop for the individual and take advantage of that and take things out of the shopping? So unless there is an appropriate monitoring of the community-based services in the same legislation in which the services come, I'm worried about it.

In terms of families being involved, I think it would be interesting for families to be involved in the care and resident plan and be there. People don't just start their lives when they move into a facility. They have a continuity. They have habits. We all have certain habits about what time we want to get up, what time we want to have our shower, whether we want our orange juice at 7 or at night. These things are free. These things don't even cost money to be able to do this for people. I think the family should be involved in helping with that kind of care plan, if there is a family. Believe me, there would be a lot more visitations if the family felt that they were wanted in that facility.

I think there should be two plans: the medical plan that they are talking about under the classification system, which I have some problems about but no time today, and a second plan about how the family is going to come in and help. I know staffing is short, but if the family was involved, they would come and do the recreation. You've got a lot of good experience out there in those family members who could come in and do things: take people out on trips, make sure they were outside, help them use the telephone. Maybe you could just have a person do telephone day where they could phone their friends, because the staff doesn't have time. So I see it in terms of two separate plans: the family helping with the care plan involving medicine. I hope that answered your question.

Mrs Margaret Marland (Mississauga South): Ms Goldstein, I identify with a lot of what you've said. I think for those of us who have personally experienced it, we really do understand. I think it's like everything else; until we experience it, we don't know what is going on, and it's the same with our health care system, generally, in the province. Fortunately, the majority of people are well, and it's only through personal experience that we see what the concerns are.

Was your mother in a nursing home or, do I understand from your brief, in a chronic care hospital?

Ms Goldstein: She was in a chronic care hospital. But I'd like to tell you, as I indicated initially, that I have been in and out of many homes for the aged, charitable and municipal as well as nursing homes, and the type of resident who is in all of these homes is very similar. Maybe it wasn't 15 years ago, but today it is.

Mrs Marland: Did you complain to your MPP or anybody about your experience with your mother?

Ms Goldstein: I'm so glad you asked me that. You see, I came into this as a naïve puppy. I came in grovelling, asking so nicely at the beginning: "Could you help me? Would you mind? Of course I'll wait half an hour." I complained to the administration at this facility. I was very involved with the corporate administration as well as the front-line staff, and it wasn't until I began to really get involved that I was ready to go to an MPP. But my parents at that time were very ill and I never did and I'm sorry that I didn't, because I didn't know to do that. I didn't have anyone to tell me.

Mrs Marland: Most people don't know to do that either.

Ms Goldstein: That is one of the things that should be in the handbook and that should be in the newspapers. Maybe it's incumbent on you people, the MPPs, to say in the booklets that you hand out to your ridings: "Are you having trouble with quality care in the facility in which you live in my riding? If you do, I want to know about it. Tell me. I assure you of confidentiality." Maybe you have to be more involved and ask people.

Mrs Marland: Well, my own family's experience is in both sectors, so what else can I say in terms of negative experience?

You referred to standards. I think that's a very important point that you made, that there are no standards, there are no overall plans. If we're going to deal with community-based programs and alternatives for care, we have to know what those programs need to be. I think that everything you have said, the fact that you are now advocating for other families, which I gather is what you're doing, is very creditable and I really commend you for doing that. I appreciate the fact that you're here today telling us what we as individual members can do, which is important for us to hear as well.

Ms Goldstein: I would like to say I have some dealings with some of the civil servants who are writing, and my understanding is that there are standards and there have been committees and there have been consultations, and the standards sound as if they're being written quite appropriately for institutional care. I don't know about the sanctions and I don't know about the enforcement, but I think that the standards are there. Whether they're going to be followed up and monitored appropriately so that they're enforced, I haven't received that information and I'd certainly be interested in seeing the regulations before they're in place, because I'm not aware of them. I know that there has been a lot of writing and they're trying to beef it up, if the information is coming to me clearly, but I tend to be cynical after so many years because I hear things are going to happen and then they don't. But they're certainly trying.

Mrs Marland: But it's the standards for the other areas that you were talking about: the home visiting, the shopping and the things outside of the actual institutional care.

Ms Goldstein: Again, I am aware of them writing standards for the institutions. My sense is, although I have not heard personally, that standards are also being written for community-based care and people's homes. I just have not been party to it personally.

Mr Jim Wilson: We haven't seen them either.

Mr Wessenger: I would like to thank you very much for your presentation. I really found it interesting to get sort of a consumer perspective on this whole question. I don't know whether you're in a position to answer my question, but first of all I'd like to know, do you feel you're in a position to know the extent of this problem of non-compliance in our nursing homes and homes for the aged? I want to know, in your opinion, is it sort of a widespread problem that's right across the whole system in a large number of or perhaps all institutions? Secondly, is there any difference with respect to the compliance between the non-profit and the for-profit sector, from your experience?

Ms Goldstein: In terms of the extent, I think it's pretty rampant, and it just depends what issue you want to talk about. I don't think I have spoken to any consumer who has said that their family member has not been sitting in wetness from head to toe on many occasions, or in faecal matter for many, many hours, or pulling a bell to have someone come and put them on a toilet. That's why we have incontinence. Many of those people who live in these facilities would be continent if there was regular continence training where people would be put on the toilet every two hours.

So I believe it's rampant, and if you want to look at neglect in terms of abuse, there is neglect. I don't want to put a per cent on it, but there's just not time to talk to anybody or to pat anybody on the shoulder, or to clean people's nails regularly or to sit with them while they're drinking their juice. I just think it is rampant, and I think all you'd have to do is go and look in the library at the Ministry of Health.

And about that, as a matter of fact, it's very good that the reports are available for the public, but I ask at the library, "Can you answer my questions?" and what the librarian says is, "Will you go up to the fifth floor and ask someone there?" Except that I think there should be someone's name available who is a resource when people go to that library so that there's someone available who can answer their questions. In other words, that's their job as part of the government. They are to be sort of a hotline or have a hotline or be a government representative for consumers so that they can ask someone.

In terms of the not-for-profit and the for-profit, what I can say is, when I was on the board for five years -- I am not now -- of Concerned Friends of Ontario Citizens in Care Facilities, I can tell you that in terms of complaints, for about three or four years, we had complaints five to one. The for-profit had more complaints. That's about what I can say about it. As far as the last couple of years, I don't know the answer to that.

The Chair: Thank you very much for coming today before the committee. We, as it has been noted, appreciate having your views, in particular as a consumer, as well as the work that you've done beyond that with some of the organizations. So thank you very much again.

Ms Goldstein: Thank you very much, Mr Chairman.

The Chair: The committee now stands adjourned until 2 o'clock this afternoon.

The committee recessed at 1213.


The committee resumed at 1405.

The Chair: I now call the afternoon meeting of the standing committee on social development to order. We're reviewing Bill 101, An Act to amend certain Acts concerning Long-Term Care.


The Chair: Our first witness this afternoon is Mr Ian Parker from the Attendant Care Action Coalition. It's good to have you here at the committee. We have half an hour for your presentation and discussion. Please go ahead when you're ready.

Mr Ian Parker: I am coming as a representative of the Attendant Care Action Coalition and I come before you to ask you to do two things as members of Parliament: (1), please pass the amendment that will enable a direct funding option for attendant services to be included in the legislation; and (2), please do not allow the destruction of attendant services within long-term care redirection.

The Attendant Care Action Coalition was formed about 1984-85 to protect orders in council, which were then a direct funding mechanism for attendant services. Our goal has been to advance direct individualized funding beyond those few orders in council. We view direct individualized funding as an essential option for the person who has a physical disability who wants to manage his or her own attendant services.

Direct individualized funding allows a new, non-traditional approach to meeting needs. It stands apart from service delivery or service provision, which is the supply approach where someone else, an organization and manager, controls an attendant service delivery system on behalf of people who receive the services.

Instead, direct funding gives the individual consumer the power to provide for himself or herself. This is consistent with a demand approach. Direct funding is a grant or allowance to the independently minded consumer who chooses the responsibility to hire and manage attendants so as to be in control of meeting his or her own needs personally.

We stress that this is a needed option for certain consumers' needs. It is not, however, sought as a blanket replacement for meeting other consumers' attendant service needs. For their own good reasons, many consumers will prefer service delivery systems. Put simply, it is crystal clear that we must be able to meet different needs in different ways. One size does not fit all and it never has.

Independence: Without the option of direct funding, there are very capable people who are being held back from assuming natural progressive control and independence in their lives. Society has been much the poorer for this limitation of individuals who are both willing and talented to participate and contribute fully to their communities. I may give you a personal example of one such individual.

My experience, for example, is not atypical. Here's a brief CV: I receive services through a support service living unit program, which goes under the letters of SSLU. When I refer to SSLU hereafter, I'm talking about the support service living unit program. That's funded by the Ministry of Community and Social Services. It's attendant services clustered together in an ordinary kind of apartment building, which is usually a public apartment building integrated.

I have experienced my disability for over 18 years now. I know my daily needs better than anyone else and I have long ago developed practical expertise about my routines.

I have confronted many more obstacles than many people ever face in life and have learned to become resourceful about solving them. I returned to university as an adult student to undertake and complete a degree program. I've been employed in positions of leadership with responsibility for both financial and staff management within this, the Ontario government. I am a successful self-employed teacher. I have made a contribution on numerous boards of directors of non-profit community organizations, including the positions of chairman, vice-president and secretary. I am still so involved. I led community representation in the development of government policy for the support service living unit program 10 years ago. I have therefore seen service delivery from many different perspectives. I am blessed with a wonderful family and I have many good friends.

Perhaps you may think I'm being immodest here. I use this simply as an example. But the essential point is this: In spite of obvious maturity, abilities, and my acceptance of responsibility in so many areas, just as everyone else like me, I have been denied the opportunity to assume responsibility for simple yet very profound matters in my own personal life. I may not choose who will get me dressed in the morning. I may not choose who will help me go to bed at night. I don't have a choice over where I may live. These restrictions can be so unhealthy that they demand a kind of split-personality approach to life. I'd like you to see into my life and how this kind of thing is difficult to cope with.

On the one hand, from my work, from a meeting or from a social and cultural function, I often experience genuine affirmation of being a valuable, contributing person, as we all do through these kinds of activities. Yet on the other hand, I can come home only to experience within the very next hour the deflation of these positive feelings because someone else is largely in control of my services and I have very little control over management of the people who are supposed to be taking direction from me.

For many of us who have striven with determination for independence in our lives, our service arrangements can have negative elements of a forced dependence. Our experiences of abrupt contrasts in how we are valued really are an assault on personal dignity. Surely when it's time for a person to move on in life and to assume greater responsibility in meeting his or her needs, that option should not be denied and should therefore be available.

In case you conclude that we are against attendant service delivery systems, we are not. We have benefited greatly from SSLUs and outreach. Self-directed care through attendant service delivery has been an indispensable support in our lives. It has enabled the pursuit of levels of independence and participation unknown in the past, when the only options were nursing homes, institutions and chronic care facilities.

What are these mysterious attendant services? Attendant services are very easy to understand. They mostly cover the same daily routines you all do for yourselves: getting washed and dressed, going to the bathroom, getting your meals, keeping your place clean and organized, and similar physical chores of daily life. There's no mystery about it. There's no specialization about it. You all did most of this stuff yourselves today. So, I ask, did you perform health care when you got yourself up this morning? No, of course you didn't.

When you can't do these physical things by yourself, you naturally get someone to assist you. When you, the consumer, are responsible for directing that person what to do, and if they are paid for their time to do these things, they're called attendant services. It's quite simple: We care for ourselves and undertake everyday activities, with someone else acting as our arms, legs and hands.

Did the person who helped me get up this morning perform health care? No, of course he didn't, no more than what you did for yourselves this morning.

Then, what is health care? It should be abundantly clear just how different the above description is from health services. We all need health care services, you and me alike. We all require health care availability when we are sick or want to prevent sickness, don't we? At that time we need the expertise and intervention of a medically trained person.

When we are ill, we entrust ourselves to the care of that health professional; that is, we accept that the medical practitioner is knowledgeable and is charged with the responsibility of directing the patient's care. Other people may also be involved in various aspects of the care or rehabilitation, such as nurses and physiotherapists, and the list is quite endless.

All health services are undertaken on the premise that the onus lies with some responsible person other than the patient himself or herself in order to ensure accountability, appropriate action, and quality assurance. Similarly, the timing, the extent and the kind of activity are all decisions that must be overseen by a professional in health services. Attendant services are different, then, aren't they, from health care or long-term care?

The most striking differences between attendant services and health care or long-term care are these three matters, I believe: Firstly, where does the responsibility lie; secondly, what knowledge and training is required; thirdly, who initiates and directs the actions?

You come up with exactly opposite requirements for each of these criteria between health services and attendant services or long-term care.

The long-term care redirection that's being undertaken now and has been for a few years: We recognize there are significant problems in the health care system, both acute and long-term.

In acute care, for instance, we face difficulty with accessibility. We face difficulty finding people who are knowledgeable about our conditions and how this may alter generally prescribed remedies. We find very little understanding of how to assist us physically in an examining room, for example. Because of many bad experiences in general, you find that most physically disabled people stay away from hospitals absolutely as much as they possibly can.

Regarding long-term care, we know the general population is aging, and we understand your concerns about future costs of an increased demand for health care. Therefore, we applaud efforts to improve quality and efficiency of the health care system through redirection to be better able to meet our needs as well as everybody else's, but our needs when they are legitimate health care needs. We encourage you to fix health care or long-term care; it'll help everyone.

The misplacement now of attendant services in redirection: I believe our use of attendant services is really not part of the problem which is driving redirection of long-term care.

Attendant services, you may know or you may not, were set up by community and consumer groups and it was done deliberately apart from the health system in accordance with independent living principles. We are not using long-term care services.

The integrity of attendant services, we believe, will be destroyed if they are forced into a long-term care system. The health services system is vast, it's rich, it's bureaucratic, and it's highly powerful compared with attendant service systems. When there is a handful of attendant service consumers or providers on steering committees of 30 members or more, for instance, what protection do we really have?


What possible chance do we have to satisfy and to safeguard our independence of services from the medically based care approach? How can we withstand the turf wars that are inevitable between professionals and paraprofessionals? How will we be dominated at the local level by district health councils, which traditionally are health-driven?

We have asked for assurances, and received them verbally, that attendant services will not be medicalized, yet we witness the relentless march to the scaffold. Attendant services cannot remain consumer-driven, non-medical, non-health services when they are being lumped together with those same services.

Therefore, we see a breakup happening. The breakup of attendant services is happening. Outreach is being separated from the support service living units and is being considered in with home care and nurses' services and a great many others. This is happening right now with respect to the development of training programs. There's an attempt to develop a generic worker who will go between all manner of hospitals and the community. So I think we're witnessing the dismantling of outreach attendant services as a separate system, and it's in the pursuit of this standardization.

What next, then, will happen to SSLUs? Will they be slotted in with residential services? I think this is based on a false assumption about attendant services. We believe that where a service happens should not determine its nature. Attendant services may happen anywhere and still retain its same nature of consumer-directed assistance. Just because outreach attendant services may happen in a house, for example, doesn't give them much in common with home care. Outreach has far more in common with SSLUs.

We must not go back to the bricks-and-mortar approach to service classification. We must recognize services by their kind and by their type and delink them from ideas about locations and buildings and where they may happen.

Self-directed attendant services fulfil a unique role. They're so valuable as they are, and the best ones have strong consumer input or are completely consumer-driven. Their integrity must be recognized and protected. We must not see 10 years of our work go down the drain.

How were attendant services included in long-term care in the first place? I believe it may have happened quite inadvertently, just as we were inadvertently caught up in Bill 43, an act to regulate the health professions -- that's not its correct title, but that's as close as I can remember. With that, you may recall that for some seven years the medical professions discussed "licensed acts" without knowing that some of the routines we perform ourselves with an attendant's assistance would have fallen under their proposed regulations.

I'm happy that through our meetings with many of the medical associations, with government officials and through our presentation before this committee on social development, we were able to all come to an agreement. We agreed that certain procedures under attendant services were indeed not medical, nor were they to be regulated, and this agreement very importantly has been made clear in the legislation itself. We are asking no less than a similar recognition with respect to attendant services as distinct from long-term care.

In conclusion, I will say that we support the direct funding legislation, we were consulted about its development and we will continue to work with the government to establish a consumer-driven model for direct funding of attendant services. We've seen a great deal of goodwill coming in that direction.

But I would finish by saying again, please pass the amendment that will enable a direct funding option for attendant services, and please do not allow the destruction of attendant services within long-term care redirection. Really, that would simply leave direct funding out on a limb somewhere and under the same pressures as the other attendant services are now going to be feeling from home care and those kinds of medically based and derived services.

The Chair: Thank you very much for your presentation. You've reminded us: It's almost two years ago, I think, when we did the health professions legislation, and I don't think any of us who were on that committee could remember the full title either. We thank you for this and hope you're still batting a thousand when all this is over. We'll begin the questioning with Miss Marland.

Mrs Marland: Mr Parker, thank you for your presentation today. Speaking for the last five or six years as the representative of our caucus for people with disabilities, I think you're aware of our support and our position in terms of a number of very important subjects for people with disabilities, but particularly the attendant care provisions. It's something I've asked a lot of questions about in the House and spoken in support of a great number of times, because I personally believe very strongly in it.

I'm wondering, based on what I've heard you say this afternoon -- and I think you've presented very strong arguments -- what we should be doing. Rather than amending Bill 101, perhaps we would be further ahead to take out the section of part IV and have separate legislation so there's never any confusion, so that you don't ever have to come back and point out to a committee that there is a difference. Separate legislation might, once and for all, guarantee the funding mechanisms to the client, to the consumer. What would you think about that?

Mr Parker: In many respects, I think that would be good. In fact, what we had even pursued was that we would be funded through some totally other ministry, such as the Ministry of Citizenship. We consider this as being so different from service provision that we would do it in a different way. However, on the other side, I would be alarmed if this was going to hold up matters more for us, and I think there's probably a very real danger that would happen. So I don't know what the answer is.

Mrs Marland: you're talking about a bird in the hand kind of thing.

Mr Parker: That's right.

Mrs Marland: At least you see something here in print.

Mr Parker: A bird in the hand, and yet we can't accept the bird in the hand if it comes with too many strings attached and if there's a great deal of danger down the road of it being overwhelmed by the very things we've tried to escape from. Context is very important.

Mrs Marland: I must tell you quite honestly that I have been very disappointed. I mention this because you say "perhaps under the Ministry of Citizenship." I know you're aware that Citizenship is one of the five or six hats that Minister Ziemba wears, including disabilities and seniors and multiculturalism, I think.

I have been very disappointed, because I think that if I were to go back over Hansard, the number of times I have asked Minister Ziemba a question on a disability issue, which is the only question area that I would ask her, because that's my only portfolio that relates to her portfolios -- without exception, every time I asked her a question, she would refer it. She would not answer the question. She would refer it to the Minister of Community and Social Services particularly, with the excuse that all the hats that she wears are funded by other major on-line ministries.


It's got to the point now where when I stand up in the House to ask a question on a disability issue, I preface my question by saying, "I hope the minister won't refer this question today, because I know where the funding comes from, but you have a responsibility to be the voice for people with disabilities." When you suggest maybe another ministry, it would concern me as much as it concerns you to perhaps wait for another piece of legislation, because I have experienced frustration in getting action.

Mr Parker: I say another ministry simply because however it is done, we'd like to break some of the old moulds --

Mrs Marland: Yes, I understand that.

Mr Parker: -- so that attendant services are, and I repeat, non-medical or health-related and they're not bureaucratically controlled by large systems. However that is done, there may be more than one way to do it.

Mrs Marland: I think you make a very valuable point about breaking the old moulds and I'd like to help you do that.

Mr Hope: Just to comment, I remember the presentation on the health professions regulations, and also dealing with this one, and the two years I've been in the Ministry of Community and Social Services, I have heard that they want more control over their lives in making sure that they have the direction of money, instead of being in the hands of somebody else. I believe this is a positive step forward and I'd like to move on this one, because I think it's going to accomplish a lot for people.

I noticed, in the minister's comments yesterday, talk about the cooperation of the group and working with the direct funding mechanism. When I was listening to your presentation today, you brought up the issue about not getting lost in long-term care. Are you saying we should make sure the money stays in the Ministry of Community and Social Services, or is there another area that you're talking about in terms of getting lost in long-term care?

Mr Parker: I guess where the money comes from usually decides what strings are attached, doesn't it?

Mr Hope: Sometimes, yes.

Mr Parker: So I'm asking that we not be forced into bed with health organizations. It may be that we're not funded from exactly the same place, or it may be that there's a discrete envelope for attendant services within long-term care. I think there are different mechanisms, but I think what we want to see is written assurance that there is some kind of mechanism that is going to keep us distinct and secure, because without that, there's very little but fear to go on.

Mr Hope: The other part of my question would be on the regulations developing around the rules and policies and procedures of accountability. As you know, when we deal with the public purse, the public asks us for accountability. It's a basic question. Have you been involved in the development of those regulations and procedures around accountability for the money?

Mr Parker: We are negotiating and putting forth ideas about that. I think accountability is only one of the areas that it would be important to consider. I don't think accountability is a major issue that ought to be considered about direct funding, albeit one of them, but there are so many other entitlement programs that are carried out with fairly minimal concerns about accountability. We would simply think that by undertaking standard bookkeeping methods and by either reporting annually or being open to audit annually, a very reasonable standard of accountability would be there.

Don't forget that this money is for me to spend on someone to help me get out of bed. I can hardly misspend it. I've got to get out of bed and I've got to pay them to do it. There's very little leeway for misappropriation by the individual, especially since, on this first cut of direct funding, I think it's being considered for mature people to self-manage.

Mr Hope: One of the areas that was brought up during questioning yesterday was around employing one's spouse or employing a family member. I would only ask that you follow up what workers' compensation does about employing one's own spouse, because there is an employer's health tax that the spouse will have to then pay. I think as you develop a procedure in whether you can hire a spouse or not, I would just direct you to the workers' compensation stuff.

Mr Parker: Thank you. I'm unaware of exactly what that --

Mr Hope: There are major problems in those procedures and policy, and I just lay that as a word of advice. I know the group, according to what the minister's comments were, is going to be an important part of developing the procedures and making sure that the system works effectively and doesn't take you back.

I'd just like to say thank you.

Mr Parker: With respect to hiring family members, I don't know what your minister's review is going to come up with, but no matter what comes up, I can see there must at least be exceptions under which this has to happen. There are people who are non-verbal, who don't speak, and the family member is either the best or the only person who may understand them. Yet the person may be quite capable of self-management. What way around that is there except to pay a family member? There are times when it's just essential. We would hope it would be a much broader possibility than that.

Mrs O'Neill: Thank you so much, Mr Parker, for coming. I presume you know Bob Brown from Ottawa-Carleton, who is my main contact and is pretty involved in speaking on behalf of this issue in the Ottawa-Carleton area. I did ask the question of the minister yesterday about what conditions would be placed on the grants or allowances or whatever the word turns out to be, and she did at that point update me on your involvement, or your coalition's involvement, in the discussions. I'm happy to hear you say today that you feel you've had some reinforcement of your input and that you do feel you are understood at that level. I think you have to keep talking and being involved there because, as you know, Bill 101, although granting you the direct funding which we've all wanted for a long time, is very nebulous in its application, with, as you say, strings attached. That's my concern: How much is going to be left to the actual regulations, on which we will have very little input? Perhaps you will have an opportunity to have more. I would certainly ask you to keep in touch with us.

I wanted to say that I am a total advocate of attendant care. I've seen it change lives so drastically. But I do realize what you're suggesting about how each station, administration or whatever the word you want to use of attendant care is unique. Every single individual who has attendant care has it for different reasons, different combinations of needs. I think that has to be taken into consideration, and that's why I think direct funding is the only way to go. I think you're very correct that the medical profession may be involved somewhat in the actual initial beginnings, but once the whole program is put in place, it's not medical.

I would like to ask you what you feel, and that was brought to us --

Mr Parker: May I just clarify one thing?

Mrs O'Neill: Yes, please.

Mr Parker: I don't want to suggest that the medical profession is involved in starting attendant services.

Mrs O'Neill: Okay, if that's a misconception.

Mr Parker: I would like to suggest that it is consumer-driven and consumer-run and set up by community groups of disabled people, with non-disabled citizens as well.

Mrs O'Neill: Okay, so you don't feel -- I would like to correct that, then, if that's not the case.

Mr Parker: Thank you.

Mrs O'Neill: I thought that maybe the doctors were involved in saying "Maybe attendant care would help here," but maybe that's not even the role they play.

Mr Parker: I was referring to doctors with respect to Bill 101 and how we did manage to work together to agree to be different.


Mrs O'Neill: Okay. The only thing I have a question on is the situation that you're in, and many others, where the housing is somewhat connected to the attendant care. In some cases that seems to be an advantageous situation because of the 24-hour on-call component. Would you like to say a little bit about that? You didn't really distinguish. Many people live in --

Mr Parker: That is the SSLU. The support service living unit model of attendant service delivery takes, let's say, 12, 14, 16 apartments in an ordinary building. It may be a co-op building, it may be a municipal housing building or it may be private. It also takes one apartment there usually to act as an office or a staff lounge.

Attendants are hired by this non-profit corporation. They come in and are available through that staff lounge. Consumers either write out in a book what they want, when they want it, or they get on the phone, the pager, when it's something that's incidental and not kind of scheduled.

It works well and I think there is a real place for it. I don't think I would have wanted to come right after my accident in the first year from the rehabilitation hospital to direct funding. I had to learn how to manage under these new circumstances and I think the SSLU was good and supportive and appropriate for me. But I don't think it necessarily is any longer and I want to move on, and there are lots of people behind me who want to move into SSLUs and can't because I'm still there.

Mrs O'Neill: So the direct funding model would help you move on.

Mr Parker: Sure.

Mrs O'Neill: I thank you very much for reinforcing much and correcting some.

The Chair: Thank you very much, Ian, for coming before the committee with the usual excellent presentation. We'll try to make sure that the ultimate results are as they were a year and whatever ago when we worked out some of the problems on Bill 43. So thanks very much for being here this afternoon.

Mr Parker: Thank you very much.


The Chair: I call upon our next witnesses from the Wexford, if they would be good enough to come forward and find a place at the table and have a glass of Toronto water. I'm pushing Toronto water today. Welcome to the committee and if you'd be good enough to introduce yourselves for electronic Hansard.

Mrs Lynn Bolton: First of all, my name is Lynn Bolton and I'm the administrator at the Wexford. This is Luba Funston, who is the assistant administrator at the Wexford. On behalf of the board of directors of the Brotherhood Foundation, which owns and operates the Wexford, and also the residents and tenants who reside there, I'd like to thank you for the invitation to come and speak to the committee in regard to some of the concerns that all of us are facing right now.

Just a little bit of background on the Wexford. We are a charitable, non-profit organization, that is, the Brotherhood Foundation is. The Wexford was built by the Brotherhood Foundation in 1977. It is a multilevel facility that provides residential care to 166 seniors who require less than 1.5 hours of concentrated nursing care in a 24-hour period. We also provide housing to 90 seniors in independent apartments, and we do provide through the Ministry of Housing some subsidized apartments as well. We also have an elderly persons centre on the lower level of the facility and we have approximately 469 members of the elderly persons centre.

So it is a very dynamic, enthusiastic environment for seniors. It's been open and operating for 15 years, and we come today with some of the concerns that have been expressed to us through the board of directors, through the resident council, the members who are aware of some of the changes that are taking place. Probably the greatest concern is that they feel the amendments to Bill 101 are going to infringe on some of their specific rights.

One of the issues is the eligibility criteria for admission into the long-term care facilities. As you're aware, at the present time in long-term care there are nursing homes which provide care to extended-care residents and then there are residential care facilities that provide care to seniors who are more independent. One of the things that the council members raised at our last meeting is that they feel that their free choice is being removed because of this situation.

While we certainly agree to the aging-in-place concept, I believe that in the past seniors have certainly utilized this concept. Seniors who come to us have lived in their homes a long time and perhaps haven't had the home care support services, which I think are a really good idea and we certainly are for that. We still believe that seniors, when they reach an age and stage of their lives when they feel that they want to come into a seniors' community, are actually going to have that right taken away because of the 10 criteria that have been developed. They feel that even if they just want to come in because they feel that they will benefit from the socialization factor, this no longer will be available to them. It's one of the major concerns they have.

Many people we've admitted to our facility are up in their 80s and 90s; probably the average age in our facility is about 87. The thing they enjoy the most about living at the Wexford is the socialization, the friendship, the recreation. There are so many different programs that go on that, if they were living in their own homes, they would not be able to get out to.

While the aging in place is an excellent idea, if the senior wants that -- if that is their desire and they want to have the support services, then by all means, that's where they should be. They should be where they want to be. We fully agree with that. The 90 seniors who are living in our apartment complex, which is attached to the residential component, are wondering whether or not they will be able, through the placement coordinating service, to actually access the residential care that is available through the Wexford. Will they indeed be able to continue down through the continuum-of-care philosophy that the Brotherhood Foundation developed years ago and be able to come into the residential care, or will they have to go through the placement coordinating service and perhaps not even be able to come into the place where they have their friends and what they're used to?

They made a few comments that they feel like we're almost becoming, in a sense, a socialistic type of -- you know how seniors express themselves. They were really quite concerned: "Where are our human rights? Where's our choice? It's being taken away."

Our last speaker addressed that. They really do have the right to make a choice, whether it is to stay at home as long as possible with all the support services that they want -- that's great, and we are for that, but I really feel if they want to come into a facility where they're going to have their meals provided, where they're going to have homemaking services and housekeeping -- you know, some of them have worked long and hard all their lives and they want to have a little bit of care.

Another concern as well is that we are subsidized through the Ministry of Community and Social Services, and right now about 10% of our population receives a subsidy. The rest of our residents totally pay their own way. With the new funding proposal -- we haven't really had clarification in regard to what we are going to be receiving -- but we have heard that there will be a copayment of $37 a day for each resident. We look at that and we wonder how it's going to affect us financially.

As I said earlier, we are a charitable, non-profit home. We have been able in the past to run the home very efficiently but with cost-effective measures in place, and we are wondering, number one, how the government is going to be able to manage paying the $20 million more, or whatever it's going to be, for the fact that most of our residents will no longer be paying their full way. We are quite concerned about that.

I think probably my greatest concern is that the stay-at-home program does not address the loneliness factor. I have had many seniors come into the Wexford who have stated very clearly, and we've had some who are 87 who come and say -- I remember one lady said to me the other day, "The last three years have been the best three years of my life," and she's now 90. It's because she has friends, there are social programs, there are outings, there are trips and there are people there who care. The seniors get together and they're like a big family and so are the staff.


I also feel that one of the issues we also face with families is that the families are under a great deal of stress. I don't think that perhaps we're looking enough at the care givers. Oftentimes the care of the seniors who decide to age in place lands on the eldest daughter or a woman or a man between 45 and 65 who has just finished raising a family, and then once again is dealing with the stress of caring for an elderly parent. I think this too is something we've got to consider, and also, regarding the financial issues they're facing if they have to quit a job, perhaps this idea of paying the spouse or paying the care giver to provide services if the senior wants to stay at home.

I really believe these are issues we should be looking at and you should be considering before these amendments are made in Bill 101. Luba's going to address some other issues that we have.

Mrs Luba Funston: As a non-profit charitable organization, we are very limited by our operating and capital budget in the amount of money we can put into our facility, not only just to maintain it but to upgrade it. With the new changes and the criteria that will have to be filled by the new residents, there will be an awful lot of changes that we will have to make to our physical plant.

We presently only have two elevators. We have no wheelchair accessibility to the majority of our rooms. The facility was basically built to be able to have the subsidy resident and the middle class person, so it's a small room. We have very few rooms where a resident is able to access the bathroom facility or his room in a wheelchair. That will limit the amount of service we will be able to provide. We have no laundry services. It would mean a complete overhaul of our building.

There is even our tray service. Now we provide it to our residents who become ill on a short-term basis with medical orders. After someone has been hospitalized and comes back, we bring them home a lot sooner; ordinarily, they would have to stay in the hospital. We bring them in with the extra tray service. But we can only do that for up to about 10 or 12 residents before it puts such a strain on the system that we can't deal with it.

Our nursing staff is only providing an hour and a half of service per day. That will also increase, which will increase our operating costs. We will have to increase the staff, nursing staff, health care aides and RNAs. Our housekeeping staff will have to be increased.

Some of the things that will be provided through the new service will be the home care programs, the medical services, physiotherapy and housekeeping; they're all in place. One of the biggest concerns, as Lynn has mentioned, is the social aspect. I meet the family of every potential resident who comes into our facility, and I usually speak to the daughter or son prior to the mother or father coming in to do the tour. It's always their main concern. It's not the care or the health care that they're getting or the home care. A lot of them are already receiving Meals on Wheels and physiotherapy. It's the care of someone coming in to make sure the meals are eaten.

I think through that process, if preventive medicine isn't maintained, they may receive the meal, but if they don't eat it, they become ill. If the daughter isn't coming in every day and checking the garbage or whatever, they don't know. Through our service, they come to the dining room and the waitresses make sure they eat their meal. If they don't, there's a follow-up system for them to know that they haven't properly maintained.

I think when they're at home, they're staying there and they get ill, which eventually puts a strain on the health care system because they are at home. They don't want to come into our facilities any more than we really actually want them there. I think most of them come when there is no option. There are a few who come in because maybe they really can't prepare their meals, but I think by the time they come to see our facility to come in it's because they really can't maintain. But with the new criteria, they will not be able to access our system in any way or form. They will still have to be staying home until they get to the point where they cannot be maintained by the family or by health care. They will probably not even be eligible at that point for chronic care and will go straight into the acute care system.

I think one of the things that is important to them is that a lot of these seniors have lost their spouses and have lost their friends. I think the bottom line for all of them is to be able to get the care they need for their physical needs, but with their emotional needs, they often create medical situations for themselves and crises that don't actually exist; they're imaginary in the beginning and end up not being so and end up being in our emergency departments and overloading the system.

By looking at the new reform and the new ideas we have, I think the health care system needed revamping. Having been in health care for 15 years, both in acute and chronic care, and now with the Wexford, I've been through it from the bottom up, being from the emergency department process, in admissions, to the trauma unit at Sunnybrook, and I've been at Baycrest and now I'm at the Wexford.

I've seen it all. I've seen them backed up in the emergency department and I've seen them at Baycrest and I've seen them at the Wexford. It's a wonderful place for the seniors and I wouldn't want us to lose that type of environment for my seniors, so that I would, at some point in my life, be able to know that's available to me and my children won't have to look after me.

The Chair: Thank you. Before moving to questions, I'll just let you put in a quick commercial plug. Where exactly are you located?

Mrs Funston: At Warden and Lawrence.

The Chair: Warden and Lawrence? Fine. We'll begin the questioning, then, with Mr Wessenger.

Mr Wessenger: Thank you for your presentation. Just some clarification: I assume you are a charitable home for the aged. Is that your classification?

Mrs Bolton: That's right, yes.

Mr Wessenger: The first question: Do you have any extended-care beds now within your institution?

Mrs Bolton: No, we don't.

Mr Wessenger: You do not have any?

Mrs Bolton: No.

Mr Wessenger: Okay. Is it fair to say this places you somewhat in a unique situation with respect to other homes for the aged? My experience has been that most other homes for the aged now have a large number of extended-care beds, so you're somewhat different from most of the other homes for the aged.

Mrs Bolton: Yes. I know there are other residential homes in Ontario, but I couldn't give you the exact figures. We are unique in that sense, yes.

Mr Wessenger: You also indicated that 90% of your clientele pay their own way.

Mrs Bolton: That's right.

Mr Wessenger: Is it fair to say that you're probably closer in operation to what we call some of these seniors' retirement homes than you are really to a long-term care facility?

Mrs Bolton: Yes.

Mr Wessenger: Those are all my questions.

Mrs Sullivan: There are a couple of observations I want to make. One of them, first of all, is that as you've described, your operation is somewhat unique in that you provide a continuum within one operational structure for a move to increasing needs of care that you're able to provide onsite.

Mrs Bolton: Yes.

Mrs Sullivan: Your funding formulas and subsidies from taxpayer dollars reflect that. Have you been involved in reviews of the manuals that are likely to be put into place? Has Wexford been consulted on those manuals and had access to them and been involved in their development?

Mrs Bolton: We weren't involved with the development, but we have sat on different committees and also at workshops that have introduced the new manuals.

Mrs Sullivan: So you have seen them.

Mrs Bolton: Yes. I have one at the facility.

Mrs Sullivan: I think, just for the record, Mr Chairman, that it might be useful to members of the committee if the draft manuals and criteria were available to the committee members. I have one because a willing person gave it to me under the table, because it was not agreed by the minister that legislators should have access to that documentation. I think that's nonsense. I wanted to be certain you had actually seen it.

Mrs Bolton: Yes. It's still in draft form.

Mrs Sullivan: Exactly. But even in that, you can see movement and intention and so on. Some of it, in my view, provides a different direction from what we see in the legislation. I think that some of the groups and organizations already have commented on that, and there will be more comments coming forward. Are we just about finished?

The Chair: No, but just as a request, then, for and through the parliamentary assistant, we could -- I believe I see some nods around the room, so it's probably likely that we can get those. We'll just note that in Hansard and the parliamentary assistant will check that out.

Mrs Sullivan: I know my colleague has a question, but having seen that, have you done a calculation for your facility on the nursing and personal care requirements and the per diems you would likely expect under a new system?

Mrs Bolton: We had the classifiers in last August, the new Alberta classification system that's been adapted for Ontario. As you're probably aware, there's a classification for funding for levels of care between residents that would require very little care, which would be a classification A, right through to classification G, which would be probably the very highest level of care.

Our residents probably would fall between, at the present time, the A and B category, which means there would be the least funding provided for them, but with the new legislation, we would have to start taking and keeping heavier-care residents, number one, in order to remain full, and number two, to meet the needs of our clients. As Luba said, there would be a large amount of adjustments made to the physical plant in order to maintain the residents in our home.


Mrs Fawcett: Just a quick question around the funding formula and when that's supposed to be available: Were you under the impression that possibly you would get that information by spring, April 1?

Mrs Bolton: We're going to a workshop February 23 on the new funding system. At the present time, everything is basically up in the air; there hasn't been any confirmation as to exactly. We've heard bits and pieces, like the $37-a-day copayment, but nothing has been finalized. There's been no detail on what exactly is going to happen. It's all speculation and it was very difficult trying to develop the budget this past year.

Mrs Fawcett: Exactly. That's what I'm hearing too, and now there is another rumour out there that it will not be ready until September. I just wondered if you had heard that as well and whether or not it would be retroactive.

Mrs Bolton: It doesn't surprise me, because they had originally said January 1 and now it's supposed to be April 1, but it wouldn't surprise me if it was put off again.

The Chair: Now, on February 2, I will turn to Mr Wilson.

Mr Jim Wilson: Thank you for your presentation. The Wexford sounds like a wonderful spot.

Mrs Bolton: It certainly is.

Mr Jim Wilson: I have a question regarding your comments with respect to eligibility criteria, because I can understand the concern of your residents upon reading this legislation. There are no specifics as to what the eligibility criteria would be. Do you have any comments on that? As I read the legislation, a placement coordinator is sort of all-powerful. Perhaps guide me as to what you think the eligibility criteria should be.

Mrs Bolton: We were presented at the workshop I went to back in December with 10 specific criteria. Now, out of the first five, the client would have to meet at least one of the criteria, and out of the last five, the client would have to meet all five criteria.

I don't have the specifics here, but basically they're saying that the resident or the senior, or even anybody requiring long-term care, would have to meet these criteria and that they would indeed have to try to get every other type of service possible. They would have to resource what's available, access every type of home care service possible and totally deplete their resources before they could be accepted into an institution or a long-term care facility.

Basically, the amendment states that they have to stay at home and deplete every resource possible and not be able to find any home care support before they would be allowed to come into residential care.

Mr Jim Wilson: I appreciate your comments there, because I've seen parts of the draft manual also. Mr Chairman, I think the testimony here re-emphasizes the fact that the sooner we get a copy of the manual, the better. Otherwise, we're asking questions, essentially, in a void here. For the world of me, I don't understand why that very important information hasn't been circulated with the legislation.

The Chair: I thank you again. I just note that has been requested and I understand we'll have it shortly and be able to look at it, perhaps next week when we're not sitting and prior to the rest of our hearings. Thank you very much for coming before the committee and for your excellent presentation.

Mrs Bolton: Thank you for hearing us. We appreciate it.


The Chair: I now call upon our next presenter, the Ontario Advisory Council on Senior Citizens. I believe we have Mr Bill Hughes, the vice-chair. Welcome to the committee, Mr Hughes. We have a copy of your briefing note that has been circulated to all the members. Please go ahead.

Mr Bill Hughes: Thank you very much. It is a pleasure to be here. I thought I'd tell you in a brief sketch what the advisory council is. It was established in 1974, so it's getting on in age. It comprises senior citizens and others, with participation from across the province, various geographical and other background areas.

Its mandate is to advise the government through a particular minister -- our minister is the Minister of Citizenship, Elaine Ziemba -- on all matters affecting the wellbeing of seniors in this province. Last year, along with many other groups, we made a study of long-term care and the redirection of it and presented to our minister a brief containing our observations and recommendations, and I'm sure that they are available to all.

Earlier this month a small group of the council got together -- the group comprised a gerontologist who happens to be a practising doctor of Chinese background, a native elder from the Cape Croker reserve, a visiting nurse from the local Metro area, and myself -- specifically to discuss and assess Bill 101.

Myself, I'm a senior and retired, a heck of a lot busier than I was when I was working, and I have been involved with the long-term planning response of a number of organizations. I thought I'd mention them to you just to establish a little bit my credentials: the Toronto Mayor's Committee on Aging, the Social Planning Council of Metropolitan Toronto, Metropolitan Toronto District Health Council, Alzheimer Metro, the Anglican Church and -- I think I've probably got the name wrong but I think I recall it as being the Hospital Council of Metropolitan Toronto. This probably makes me accomplished in one way, and that is in being confused on all the issues. But we did get together, as I say, in the last month and have discussed Bill 101, and these, sir, are our comments.

First, we applaud the government for introducing legislation on long-term care, but we very much urge the government to maintain the momentum and release its policy framework document as soon as possible.

We held many public meetings the year before last with seniors from rural Ontario and we found there are great disparities in the level of social services available in the rural areas, the small-town areas of rural Ontario, and we made very pointed recommendations that these areas required a great deal more attention than they seemed to be getting.

In the past year we have concentrated on consultations with first nations areas in the province. Our report will be coming out within the next two or three months, and I think that will show even more the inequities in long-term care facilities in this province and the way in which, perhaps, seniors in this culture of our first nations people have been underserviced and perhaps undervalued.

On behalf, therefore, of the 1.2 million seniors who are in this great province of ours, we appeal to the government to proceed without delay to make sure that redirection occurs and that the gaps in services that are very apparent, particularly in these two main areas of the province, are corrected.

We support fully Bill 101's efforts to reform the funding arrangements governing nursing homes and municipal homes for the aged based on a levels-of-care classification system.


We are worried that many seniors and their families will find that redirection will limit access to facility-based care. We obviously don't want this to happen, to become a reality. We would ask that the government provide some illumination by releasing its figures that it must have projecting future demand for facility-based care. We don't want this type of care, which is an important type of care, to disappear.

We praise Bill 101's intention to provide per diem amounts to institutions for programming for seniors.

We're encouraged that Bill 101 will require most homes to sign service agreements in order to receive provincial funding and will give the province the right to reduce or withhold subsidies when homes are in breach of these agreements.

Council fully supports the bill's intention to require homes to give residents written notices describing what services are to be provided under the agreement. As a caution, we urge that written notices be written in plain language and be available in a variety of languages, as suits the multicultural nature of our province, as well as in other formats such as audiotapes for people who can hear better than they can see and in large print for people like me who require glasses.

Council would also like to see a planned, yearly meeting with the resident, a family member and a representative of the home to review service obligations. In this way people can be kept up to date with what is expected of them and what they expect to receive.

Placement coordinators, one of the features mentioned in Bill 101: We would urge that placement coordinators be culturally sensitive, because access is, to a large extent, channelled through this agent, and it may very well be that placement coordinators have to be particularly sensitive to the cultural nuances which exist. We believe that access is one of the important, in fact one of the dominant, imperatives in this redirection of long-term care, and we want this accessibility to be real rather than perceived or proposed. We want it to be actual.

Direct funding: We have two concerns. One is that the proposed legislation, Bill 101, does not extend the direct funding option to senior citizens or their care givers. It is, in part, extended to certain people with disabilities. Ontario seniors are capable people, former bankers, business people, and I'm sure you'll even find some present and past politicians in the group.

Mr Hope: That will be a while.

Mr Hughes: Not necessarily present in this room, sir.

These people are people who have exhibited a lifetime of financial prudence and acumen, and there would be a great deal of an advantage for seniors, as well as for people with disabilities, if they had the flexibility of directing their own resources.

Secondly, we are perplexed that even in the limited form of direct funding proposed by Bill 101 there seems to be a need to test this on a pilot-project basis, where, since the mid-1970s, persons with disabilities have been actually performing this function themselves and, we believe, very well. We wonder what the need is for a pilot operation at this time. We recommend that the pilot project is not necessary, and that you can proceed directly to that phase.

We fully support the shift in emphasis away from institutional care in favour of community care. This certainly is, to our way of thinking, a good way to go. But as I said earlier, seniors need both options. They need both community-based care in their own homes or in home-like surroundings, and institutional care.

I'm sure that warnings have been given to make sure that the move from institutional care to community-based care does not trigger the same kinds of circumstances that happened when mental patients were discharged from institutions. I was certainly involved in that stage in trying to find a home for ex-psychiatric patients, which I eventually did. That home is located in that great commune of Forest Hill. It was put there with a certain amount of local objection, but it has been there very successfully ever since those almost 20 years ago. But that was something that penalized both the ex-psychiatric patients and their families and ultimately the community. All we can hope is that we have learned from that lesson and that, as people are directed to community-based facilities or community-based situations, those situations and the services they need will really exist. We would like to have some reassurance that this will happen.

Of course, we have to continue to commit funds to ensure that long-term care is a success for Ontario seniors. This strange number of $647 million keeps appearing and has kept appearing for years and years. It has always been the right number, regardless of what year and what level of inflation and the changes in the particular redirection. All we are concerned about is that that is in fact pledging enough money to make the system work.

I'd like to briefly comment on the study that we are just doing with seniors in first nations communities. I don't know how many of you, in your concern, have first nations communities in your ridings.

Interjection: I've got one.

Mr Hughes: Do you? Well, we have selected quite a large number of reserves to visit and have talked to a large number of seniors and care givers for seniors in these areas. Our report will detail what we have found. Even tomorrow and tonight we will be dealing with other first nations people who have kindly come in, some chiefs and others from the eastern part of the province, because we felt there was a bit of a gap there that we hadn't covered in one particular area. We've listened very hard to them and we have really been impressed by the shabbiness of the services provided to seniors in the majority -- not all -- of these communities.

We would hope that Bill 101 and its successive legislation intend to deal with these people as with all Ontario seniors, and that is to provide fair, equitable and good services to the seniors. We found that where this doesn't happen and services are not available, communities are broken, families are broken, and individual people who need support are at terrible risk.

Other than saying that we would like, if possible, to get some kind of feedback from all the consultations which have gone before so that we can measure what in fact the community commentary was on the initial Redirection, I want to thank you very much for this process of being consulted and being allowed to participate in this session today. I compliment you, thank you and Godspeed.


The Chair: Thank you. We have a number of questions, so I'm going to ask if everyone would just do one. I'll try to accommodate the members who want to get questions on, beginning with Ms Fawcett.

Mrs Fawcett: Thank you for coming. Your brief certainly touches on many areas of concern for seniors, and I think you're telling us to get on with it and stop consulting and really get to work.

I was interested in a couple of areas and now we are limited in time. I hear you saying that choice for seniors should be an absolute --

Mr Hughes: Yes.

Mrs Fawcett: -- and that when the coordinators are dealing with this, they must provide that in some way.

Mr Hughes: Yes.

Mrs Fawcett: It is certainly our party's belief it should be too, and we hope that's what's going to happen.

Do you agree that some of the services that now would be proposed to be on a fee-for-service basis, such as maybe foot care, is a good idea, that some of these services that are so-called extra services should be paid for by the client or by the person? How does that fit in with your --

Mr Hughes: I think, by and large, we kind of take what I think the provincial position is, that health care should be free, and optional things -- whether that includes foot care I don't know. That sounds like medical care to me somehow. If you can't walk properly, it sounds pretty desperate --

Mrs Fawcett: I agree with you.

Mr Hughes: -- but with certain things I would have no trouble. Seniors, by and large, don't mind paying their share. That's not a problem. But I think if health care is supposed to be free, then it is in all its ramifications free. In detail, I couldn't help you.

Mrs Fawcett: Would your council be looking at --

Mr Hughes: We certainly have looked at this. The original presentation -- I didn't read it before I came -- probably contains something on that.

The business of options very much is important; options in housing, Lord knows what supportive housing is that is talked about. But whatever it is, let's hope there are options for people, and that's accessibility and options together, please.

The Chair: Mrs Sullivan.

Mrs Sullivan: I'm interested in following up on your study in relationship to the first nations. My understanding from discussions I've had in northern Ontario is that the first nations are now moving into almost a concept of government-to-government health care approach, using something that's comparable to a district health council based in association with planning for health care on-reserve. Where the problem in health care generally, particularly in the north, is seen to be with first nations people is with those who live off the reserve.

I wonder if your study moved into that area at all and if you looked at the long-term care requirements of first nations people, of native people, off-reserve.

Mr Hughes: I had a lot of trouble in trying to find first nations people off the reserve. Our study was a pretty fast one in that it took a year. We did look into the concerns of off-reserve first nations people, particularly in the Toronto area where there are reportedly many thousands. We found them awfully hard to find. We certainly didn't have any better luck than the native organizations that are supposed to be involved with them, because they couldn't tell us where they were. Most of these people have kind of come into the main society and wish to be there, notwithstanding there is quite a movement back to the reserves now as legislation has changed and enfranchised many of them again.

One of the problems on some of the reserves is the flow-back of first nations people who now have to be provided for, and it certainly makes a heck of a lot of problems in their housing. Other than that, we didn't have a whole lot of luck in discussing with off-reserve first nations people, so we concentrated, by and large, on reserves.

The Chair: Just before going to Mr Wilson, you may have mentioned this, but when is your report on the first nations going to be out?

Mr Hughes: It's at the draft stage now, so I would imagine in a couple of months.

The Chair: Okay. Thank you. Mr Wilson.

Mr Hughes: Something along that line; it will, of course, be publicly available.

Mr Jim Wilson: We too look forward to your report on the first nations. I have myself toured many of the reserves. I used to be a former assistant to the Minister of National Health and Welfare and we were responsible for health care --

Mr Hughes: Oh, yes.

Mr Jim Wilson: -- on native reserves, many of them across the country. I know of the deplorable conditions of which you speak, not unlike some of our rural areas, though, outside reserves, including an area as close as Simcoe county, my county. We do not enjoy near the level of services enjoyed in Metropolitan Toronto. I'm often amused by the assumption made by many legislators that somehow just an hour away from Toronto they have the same services, and of course it's just totally untrue.

I am interested very much, though, in your comment. I think there's a very important line in the brief on page 4 which says, "However, for seniors to be well serviced both options must be available to them." That's talking about the need to keep in place institutional care but also to shift, where possible, towards community-based care.

Just a general question right now to get the lay of the land from the council: Is there a great deal of concern out there that perhaps the government -- previous governments had moved quickly towards deinstitutionalization, closing hospital beds, freezing nursing home beds, and we have waiting lists now for a number of those services, for nursing home beds and for community-based services. Can you give us the lay of the land out there now, because you did end your remarks by saying Godspeed.

Mr Hughes: I have to temper my remarks by saying I'm not an expert in this area and I'm not privy to any of the plans that the government or non-government side may have.

Mr Jim Wilson: Well, neither are we.

Mr Hughes: What I would say is that there is concern that present long-term institutional facilities not be closed down before something else is in their place, before community-based services are in their place. What we have seen is some evidence that this has happened, that some beds have been closed down for a variety of reasons. It may make sense but it makes us feel a little nervous that the closing down is happening before the opening up of the other resources. That is one thing we are really concerned about.

We are aware that there are waiting lists, and again this is a concern, to close down while there are waiting lists for good nursing homes and good homes for the aged.

I'm not quite sure what the policy is but we are looking at this; it is a concern, yes.

Mr Jim Wilson: Apparently it's an ongoing policy of the government, that it will reveal it piece by piece, the minister told us in her opening remarks.

Mr Hughes: I see. Okay.

Mr Jim Wilson: Thank you for your comments.

Mrs Marland: My comments really were also in the same vein as those of the two previous speakers. It's interesting, when you talk about our native people, that I think they perhaps show all of us a prime example that for the most part puts us to shame, because they are a community who look after their seniors a lot longer and with a different kind of closeness than we do, and that's been for centuries. I think it's part of their culture and it's one from which we can all learn and admire a great deal. I think as long as they possibly can, they look after their own people as they age, within their own families, which we don't do to that degree.

It's always been easier for us, I think, although speaking as someone who had to make the decision about putting -- I hate that expression, "putting my mother in a home for the aged," isn't that the truth? -- to make the decision we have to make for the best care for our beloved aging parents and aunts and uncles.

When we make that decision, it's because we believe we can no longer cope and it's in the best interests of the individual, but I think our first nations people do a far better job of it. I'm not denying that the need is there. I agree with you that the need is there, but the very fact that they cope longer and better than we do means that when they reach that point it should be a community-based resource. I think the point my colleague Mr Wilson makes is terribly important for other people who live in rural areas, period. I think that's a very valid point that was made by Mr Wilson.

Mr Hughes: My comment there is that I think seniors, elders in particular -- the names are not synonymous -- in the first nations communities are very much respected. They are the carriers of the culture.

Mrs Marland: That's right.


Mr Hughes: Particularly the grandmothers; without grandmothers, the system would be impoverished. But they are respected in many fields, many areas. We saw that, but we also saw an erosion of that. We also saw that it is getting harder and harder for young people to be supportive of the old. We also saw that on the reserves to which we were welcomed, and in all cases we were welcomed, we found that the number of seniors on the reserve was about half what you'd find in the rest of the population, and we wonder where the other half has gone.

Mr Hope: My question is around rural Ontario. Why a lot of seniors are there and in need of care is because there are no jobs available in rural Ontario. With free trade and other things, we have to leave and find jobs in larger centres.

I was looking through the report. This morning, we had a presentation to this committee from the Catholic Health Association of Ontario.

Mr Hughes: The which, sir?

Mr Hope: The Catholic Health Association of Ontario, which talked about the rules that would be involved in the service agreements, dealing with no autonomy for the board of governors. In your report, you're telling me these are good things. As legislators, we're trying to decipher which is the information that we should flow on, and I'm just curious. After listening to what they told me this morning about accountability -- leave them alone; let them do what they want -- you're saying that the service agreements are good. I just want more clarification on your points in your brief and your presentation when you talked about the service agreements. The council is encouraging that in the legislation, Bill 101 require most homes to sign service agreements in order to receive provincial funding. Are you saying that the stipulations are good? What consultation have you heard about?

Mr Hughes: Sorry. Could you direct me to the section?

Mr Hope: It's on page 2.

Mr Hughes: Page 2?

Mr Hope: I'm just looking at the other one because I'm trying to figure out what you're telling me representing seniors and what I was told this morning representing, I guess, nursing homes.

Mr Hughes: Mr Hope, I'd prefer not to talk about what that group is, because I wouldn't understand where they were coming from. They may be very right in what they say. However, what we like is the notion of control that this gives. There would be some leverage to make homes adopt and maintain good standards. It may not be the world's greatest vehicle for doing that, but to the extent to which it does provide some way of leveraging the facility to provide ongoing, good, high standards of service, we applaud that.

Mr Hope: But it will not deteriorate or destroy; it will just build. If I'm understanding what you're saying the service agreement is, it's a minimum standard but then you'll still allow those homes the autonomy to be better.

Mr Hughes: I hope so, yes.

The Chair: Ms Carter, a final question.

Ms Carter: I just wanted to pick up on the question of the supply of facility-based care. My understanding is that that isn't being reduced; it's being redistributed rather than reduced. But I believe it's also the case where some of the type of measures that we're adopting have been adopted in other provinces or whatever, that the demand for facility-based care has fallen, as more people have been enabled to stay in the community. So I just wondered about your comments on that.

Mr Hughes: Yes, thank you very much for that point. Your perception is much broader than ours. Because we don't know what the overall scheme is, we notice incident by incident, without seeing the whole pattern. We try to see the whole pattern; it's very difficult. It's easy to see something being closed down. It's very difficult to see things being reassigned and redirected. I'd certainly take your word for that. Thank you.

The Chair: Thank you very much for coming before the committee this afternoon. Among other things, we'll look forward to the report on the first nations.

Mr Hughes: Thank you, Mr Beer.


The Chair: I now call on the representatives from the Royal Canadian Legion. While they're coming forward, I'd like to just inform the committee that we have received copies of the manual that people were discussing and I've asked the clerk to distribute those now.

Gentlemen, welcome to the committee. If you'd be good enough to introduce yourselves for Hansard and then please go ahead with your presentation.

Mr Ross Paterson: Thank you very much. My name is Ross Paterson. I am the president of Ontario Command of the Royal Canadian Legion. Mr Jack Currie is with me; he is chairman of our veterans' services committee for Ontario Command.

The Chair: Welcome to the committee.

Mr Paterson: Jack will do most of the talking today.

The Chair: Is that the way it works in the Legion?

Mr Jack Currie: No, not really.

Mr Paterson: Not really. He's done most of the work, too.

Mr Currie: Thank you very much for having us. First, I would like to give you some background on the Royal Canadian Legion. It's one of the largest organizations in Canada and we are still best known for our work for veterans, ex-service members and their families. That's true, even though Canada's war veterans are gradually disappearing and the average age of Second World War veterans is now 71 and Korean veterans 60 and over. In fact, our work on their behalf in the years ahead is not expected to decrease. Their numbers are shrinking and their needs are changing as they age, but their demands and those of their dependants are actually increasing.

In 1990 the Legion provided more than $5.5 million in direct support to needy veterans and contributed over half a million hours of volunteer time assisting 66,852 veterans, ex-service members and their families.

Although we are best known for our assistance to ex-service persons and their dependants and our Remembrance Day activities, the Legion has long accepted its responsibility to be a productive and supportive part of the community.

With representation in virtually every village, town and city in Canada, this commitment is far-reaching. Perhaps the easiest way to illustrate this commitment is through a couple of examples. Nationally, the Legion spent $5 million on medical services and equipment in 1990 and the Legion contributed nearly $44 million to community-level charities and 980,650 hours in volunteer time to community projects in 1990. We fully expect the Legion's commitment to these community support programs will continue and grow in the years ahead.

The Legion's contribution in Ontario: Those who work within the Royal Canadian Legion are aware that it makes a significant contribution to the economic and social wellbeing of communities in Ontario. The extent of our contribution, however, is not always easily recognized. Ontario Command has nine districts, 446 branches and 176,000 members.

The charitable foundation of Ontario Command approved over $600,000 in donations to hospitals and health care facilities in Ontario at its annual meeting on November 12, 1992. It also committed to provide $450,000 in bursaries to Ontario students for the 1992-93 academic year under the Ontario bursary program. I would like to add, ladies and gentlemen, that we also have found that another $500,000 was contributed by branches directly to the hospitals in their communities.


The Legion's citizenship in the communities of Ontario ranges from taxpayer to employer to consumer to donor of time and money. Based on information submitted by 172 of our branches, we estimate the following for Ontario Command: gross revenue, $11,835,315; municipal taxes paid, $4,694,179; licence fees paid, $1,394,870; the number of employees, 2,996, with salaries paid of $19,249,997; total moneys paid to contractors for maintenance, repairs and construction, $7,816,453; we gave donations of $20,717,186; volunteer hours were 1,723,028 hours, and the use of our facilities by community groups was 51,707 times.

Our organization is an advocate for all veterans, as you can see. We contribute immeasurably to the communities in Ontario.

Our veterans' care: The Legion has a long-established commitment to veterans' care. In Ontario, our veterans services committee formed a subcommittee to address specific concerns relating to the advocacy of institutional care for veterans in Ontario. Members of this committee have now begun to meet with Ministry of Health representatives to discuss issues of concern to the Legion. Our participation in public consultations such as this one has been strongly recommended by our contacts at the Ministry of Health, and this is the basis for our presence here today.

Our concerns regarding long-term care; a guarantee on priority access for beds for veterans: Bill 101 does not include any guarantee with respect to the priority access beds. We have been advised by the Ministry of Health officials that the long-term care reform will not violate the right of veterans to the priority access beds provided for in the transfer agreements from Sunnybrook, Westminster and Rideau Veterans Home. This alleviates some of our concerns, but we are requesting that this guarantee be included in the text of Bill 101.

Legion care and housing projects: The Legion has provided a startup cost and funding for several projects in Ontario. One of the examples is our Metro Legion Village. We have been advised that the long-term care reform will apply to this particular project if it is funded by the province as a home for the aged rather than as supportive housing. We are concerned that the admission process, as defined in Bill 101, will not provide some preference for veterans. Given the Legion's substantial contribution to these projects, we think this is not an unreasonable request.

The closed beds at Sunnybrook: We recognize that Bill 101 does not apply to chronic care and that the closed beds at Sunnybrook in K wing are chronic care beds, but we want to ensure this issue is raised to the extent of long-term care. The 45 priority access beds for veterans in K wing have remained closed for over two years, despite past assurances that this situation is temporary, a waiting list of needy veterans could fill these beds and a transfer agreement that provided for these beds for veterans.

It has been said before and we say it again, "Time is running out." There is no special interest group more meritorious than this group and their needs must be met in the short term or they will not be met at all.

The coordination of placement service: Our organization remains concerned that the right of veterans to be recognized and receive all levels of care authorized by the veterans' care regulations might be jeopardized by Bill 101. The veterans' health care regulations provide for residential and nursing care and partial funding for the care that is provided under the veterans' independence program, Veterans Affairs Canada, for certain eligible veterans. We want to ensure that the admission policy will continue to provide for social admissions and necessary adult residential care for veterans.

The Legion is concerned that additional budget restraints may result in further erosion to veterans' care in Ontario. We would like to establish a commitment by this government to ensure that this special group will be protected from future restraint measures. A Sunnybrook K wing situation cannot happen again.

Our organization extends its thank you for your consideration of this brief.

The Chair: Thank you very much for your presentation. We all recognize in our own communities what the Legion does. It's always stunning when one sees it laid out on either a provincial or national basis. So we thank you very much for this information.

We'll begin the questioning with Mr Wilson.

Mr Jim Wilson: Thank you, sirs. As the Chair has indicated, it's true that the Legion in many of our communities, particularly in rural Ontario, is indeed the lifeblood of the community. We certainly appreciate your presentation today on behalf of your comrades.

I think you raised a couple of very good points, particularly your first point, which leads me to believe that perhaps we could support an amendment supporting your request that the guarantee of priority access to beds be included in this legislation. We'll contemplate doing that. I give you that commitment on behalf of the Ontario PC Party.

Secondly, I want to ask about point 4, the coordinated placement service. Through the Chair, I guess I really want to find out from ministry personnel who may be present here today, or perhaps through the parliamentary assistant, whether or not there have been discussions with Veterans Affairs Canada concerning the veterans' independence program and the coordinated placement service, the point contained in number 4. Perhaps the parliamentary assistant would like to comment on that or get back to us on that.

Mr Wessenger: We could call on ministry staff to respond to that, if you like.

Mr Jim Wilson: If the presenters don't mind, I would like to hear whether there have been discussions in that regard. It's an important point.

Mr Wessenger: I could certainly ask the appropriate staff to reply to that question.

The Chair: If one of the ministry staff, Mr Laverty, would come forward.

Mr Patrick Laverty: I'm not aware of specific discussions between ourselves and Veterans Affairs on that, but I cannot guarantee that there have not been discussions with the residential services branch.

Mr Jim Wilson: Thank you, Mr Laverty. Could I, Mr Chairman, through you to the parliamentary assistant, perhaps request a written response to point 4 from the minister herself, so that we have some assurance that this isn't being overlooked? I think it's a point that certainly would not have come to my mind had it not been raised in this presentation.

Mr Wessenger: I'd like to add to that request, since I think it would be very helpful if we had an opinion from legal counsel that Bill 101 does not in any way affect the transfer agreements for these particular homes -- first of all to get a legal opinion if there is a problem, or if the rights are protected.

Mr Jim Wilson: With all due respect for you being a lawyer and other lawyers, I'd prefer to have the minister's signature to a legal opinion.

Mr Wessenger: No. I think we ought to have a legal opinion on that.

Mr Jim Wilson: I'm not sure it's any good at the bank, but I'll try.

Mr Wessenger: I think it would be useful.

The Chair: I don't want to jump in between lawyers, but the request has been made and we will get that clarified, or I'm sure we'll have more questions about it.

Mr Jim Wilson: Thank you, Mr Chairman, and thank you, sirs.

Mr White: I want to commend you both for coming forth. I recall being at the Whitby Legion, Branch 112, at the 65th anniversary dinner. There was quite a list of the former presidents. When Harry Inkpen read that list and described those presidents and the history of the Legion, after many of them he reflected that in their final years they were in decaying health or in poor health.

I think that really speaks to the issues that you're bringing forth, that so many veterans, so many legionnaires, are at a point now where your needs are overlapping very much with those of other seniors in need of that long-term care. When my father goes to the D-Day dinner here in Toronto every year, he reflects upon how the numbers grow fewer. They are important, and your status is very important. I very much appreciate the very articulate requests that you have, for example, the amendment that Mr Wilson just referred to and that, as far as I can see, should be well supported.

I'm wondering in regard to a couple of items; number 4, first off. The level of services that might be needed, whether it might be home care services or other kinds of services for veterans, aside from chronic care in hospital, which you've already discussed, is there money that follows from Veterans Affairs that would pay for, say, services at home?

Mr Currie: This past year, the total amount that Veterans Affairs paid in Ontario on what we call the veterans' independence program, which is help in the home and all the needs that are needed in the home, was $6.7 million. We have some 28,000 veterans on the veterans' independence program, and I believe 42,000 different contributions were made. This has been going since 1985, and the Legion stepped in four years ago with what we call our Legion Still Cares program, so we bumped those numbers up from about 18,000 to 28,000 in a short time.


What is happening right now is that these people who are getting the veterans' independence program in their homes are now getting to the point in age where they need some institutional care. One of the things we noticed very quickly is that if the veteran is living at home and his wife is the care giver, if something happens to her, then we have two people to look after. This is happening in our Legion homes. Quite often we have two people to look after rather than the one, and these people are getting up in age. We say the average age is 71, but this includes a lot of the boy soldiers who went overseas when they were 17 or 19, so a lot of us, like myself, are older than 71.

Mr White: It would certainly seem to me that if you have a flow-through like that, where frankly the federal government hasn't been generous in terms of health care funding and the cap on CAP etc and we have been faced with a lot of budget cutbacks -- where we have a situation like this, I'm sure the minister would go out of her way to ensure that those moneys would continue to flow in a prioritized way such as you request.

The other issue I was going to pick up on was Legion housing. Is it presently under the Ministry of Housing as social housing?

Mr Currie: No, most of it is under our own. We have 38 different apartment building housing units in Ontario. The one in north Toronto called Finchhurst was started in 1947, and was put there by Legion money. The land was a grant, actually, from Veterans Affairs; as long as we provide housing for veterans there, the land is ours and it's tax-free. We provide 150 apartments there and the Legion maintains it. All we ask the people who live there is $140 a month for a single and $190 for married quarters. That just covers our costs of operation, so anything else that is needed, like any major repairs to the building, is done by grants from the Legion.

Mr White: That sounds like supportive housing as opposed to a home for the aged, though.

Mr Currie: Yes.

Mr White: Thank you very much.

Mr Wessenger: My question has probably been answered, but on your point 2, with respect to the Metro Legion Village, I gather you would be quite happy if the project was funded as a supportive housing project. When you're questioning whether it should be funded under homes for the aged or supportive housing, you're really just looking for money and it could work as a supportive housing project. Is that correct?

Mr Currie: Well, I'm not quite sure of that. Once again, the Metro Legion Village is standing on land that was donated to the Legion. The original building was built with money that was raised by the Legions and it has a mortgage, a small CMHC mortgage. We do get funding for the people who are in there. I haven't been on the board there now for two years, but during the years I was on the board, I know the home went into the hole about $137,000 a year. Many of the veterans living there are people who have not got income enough to pay their way, so if what the Ontario government gives is not enough, we pick up the balance; over the years this has been roughly $137,000, sometimes a bit more.

We've had help now from the veterans' independence program from Veterans Affairs of Canada: If a person qualifies, they give us $80 a day to look after him when he's in our home, and this helps. Our commitment has been going downhill, but there is money from the Ministry of Health as well.

Mr Wessenger: To follow up with respect to your waiting list for needy veterans at Sunnybrook, is the waiting list more a reflection of the need for care per se -- obviously, they do need the care -- or is it also preference: the fact that they want to go to Sunnybrook because of the social aspect of it?

Mr Currie: I guess if you were a veteran, you would like to go to Sunnybrook because it is a veterans' home and there is support from the Legions in there; last year to about $68,000. But the point is that many of the veterans there need care. They must have a war disability pension to come into K wing or J wing, and they're there because of that. Of course, there could be the possibility that they like to go there.

At the present time, there's quite a little problem: Those veterans who are living there are going to have to pay room and board to $550 a month. This is a concern we have too. I know that those who do not have enough income will not have to pay it. At the same time, we feel that the pension a veteran gets for a disability overseas is not to pay for his keep. We should have medical care for our veterans.

Mrs O'Neill: Thank you so much, gentlemen, for coming. "Comrades one to another and beyond," I know is your term. I would like to say that there are groups you communicate with on a regular basis that many others don't, and one of the groups is the MPPs, and I want to thank you for keeping in touch with those of us who are in the legislative role. The other group that I really admire your efforts in, which I don't think you specifically mentioned, is your contact with our youth and your persistence to remember those who either died on the field or have died since. You have certainly created traditions in all these communities you're in. You have not let us forget our sense of history, and you really demand that we stop and reflect at least once a year on those achievements and donations of actual human life.

I totally admire your volunteer efforts. I don't think many of us realize just how broadly based they are.

I really think you should pursue your request for priority placement for Sunnybrook, Westminster and Rideau. I hate to say it, but I don't think we can presume that, and I really feel it is in your best interests, and will be in ours, that you pursue that in legislation. Other legislation has included much less of importance, in my humble opinion.

I've had many letters from Legions in the last few weeks. I think your fees for elevator licences have gone up drastically, and I'm not very happy about that. I hope some of your letters will reach the right decision-makers in this place. We are certainly bringing our support to your cause, because certainly you were somehow misinformed about what the obligations would be once you had tried to install elevators for the disabled in your own communities and for the many people who use your facilities beyond your own members.

I thank you so much for coming. I think it's wonderful that we have some of your achievements on the record now. I don't think there is any problem with your being too modest; I think that is your characteristic.


Mr Paterson: I want to assure Mrs Sullivan that we will not stop protecting the beds of the veterans and will continue to work for the beds of the veterans. Twenty or 25 years ago we would never have thought that we would be experiencing a feeling somewhere in the province that it is not necessary to keep these beds open and that we're all dead. There was a survey taken a number of years ago that said that people like Jack and I would no longer be around in 1995, so there wasn't such a problem in terms of worrying about the veterans.

We veterans are fewer in number, but a lot of people don't realize that when we get fewer numbers we're getting more problems. We're all getting older, and some of the things we experienced overseas have contributed to the fact that we are getting older more quickly than we should have and we have all these related problems.

We know there is good feeling, but our concern is that we don't have something on paper saying that this is protected. That feeling is not going to be there a few years down the road, because we're already experiencing that in trying to fill these beds. When the PI wing in London closed and we transferred our people from the PI to Parkwood Hospital -- I'll use rough figures. There were 90 beds taken up by those people who were moved over to Parkwood, so we had 90 beds that should have been filled. Fifty of these were going to Rideau over in the Ottawa area; we still have 40 beds which are in limbo. We are making sure that those beds end up somewhere, and we hope it will be in northern Ontario. But that's an acute problem right now.

The problem is that we have to have some guarantee that we will still be able to run these institutions that we have built and maintained, with some help of course, and still be able to contribute to them. District D alone here in Toronto, which is the Metro part of Toronto, twice a year contributes considerable thousands and thousands of dollars from the branches for the maintenance of the Legion village and Finchhurst and the other facilities around here, and that's direct money which goes to support it that nobody else puts in there.

We do have in our possession -- and I really don't believe the statement made at the time was indicative of the majority, but it said that veterans' needs will be looked after along with the rest of the public. Since that statement was made in a letter it hasn't come up again, and I think we've made enough pressure that that's not going to happen. We're just saying put something in the bill which will say to the people who have come along after us that we have some guarantees that veterans' priorities will be looked after.

We had no problem when we came back from overseas -- Jack and I both spent over three years over there -- because we were all waving the flag at the time, but unfortunately the flag doesn't get waved too much at the present time and we have major concerns. We're sure that your committee, in looking at this, will look at that problem we have, because we want to continue putting that money back into the community and helping our people as well as helping the rest of the public.

Mrs O'Neill: Gentlemen, I'm Mrs O'Neill. This is Mrs Sullivan. I am from the Ottawa area. Ottawa-Rideau is my riding, and that's why I'm so familiar with Rideau. I just didn't want to have mistaken identities.

Mr Paterson: I'm sorry; that's my bifocals. I apologize.

The Chair: We confuse them all the time.

Gentlemen, I want to thank you for your presentation. I think you've made your points very clear, and the committee will certainly take those under its wing as we go about preparing our report on this bill. Thank you again for coming.

Mr Paterson: Thank you.


The Chair: I would now ask the representatives of the Federation of Ontario Facility Liaison Groups if you would be good enough to come forward. I think we see one face from this morning. We welcome you all to the committee. Would you be good enough to introduce yourselves for Hansard and then please go ahead with your presentation.

Mrs Margaret Paproski: I'm Margaret Paproski, the president of the Federation of Ontario Facility Liaison Groups. With me are Peter Delsnyder, our vice-president, and Janet Allingham, our secretary.

Just for a bit of background, the federation represents eight groups of parents, relatives and friends of people who are developmentally disabled and who live in Ontario institutions. It was formed because we felt that the needs of people who had profound disabilities and who lived in institutions were neither understood nor were their needs realistically addressed by proponents of the policy to close institutions and to use only community generic services.

We appreciate very much the opportunity to attend before this standing committee. Unfortunately, from our perspective, the long-term care initiative has been directed at the elderly population and the physically disabled population. However, there's a significant population of adults who are developmentally disabled, who also require care and services throughout their lifetime. Many of them have physical disabilities, mental disorders, and in the case of the institutions, a growing number of them are elderly.

Although the responsibility for the care of these people lies with the Ministry of Community and Social Services, the needs of these adults within this population who require long-term care are not being addressed to our satisfaction by that ministry.

I'd like to give you a brief run-down of one facility in particular on which I have statistics, and the material that has been distributed also refers to some others. At Rideau Regional Centre in Smiths Falls, approximately 90% of the people there have been diagnosed in the range of severe to profound mental retardation; 85% at that facility are over the age of 30; 45% are over the age of 40; 6% are deaf; 46% have epilepsy; 16% have cerebral palsy; 33% exhibit severe behaviour problems and 19% are non-ambulatory.

These people require very significant needs and specialized services. We're very concerned with the deinstitutionalization process and their placement in group homes where, at this point in time, there does not appear to be good monitoring, evaluation and assessments of the programs in the community, and because of their inability to speak and to advocate on behalf of themselves, we feel they are being placed at risk.

We've also, in the past couple of years, visited each one of the facilities we represent and have just brought a new one, Oaklands, which is a schedule 2, into our fold. It is interesting to note that, especially with Oaklands, which was originally designed to be an alternative to the large institutions, as a short-term place where people could be educated in the community, take part in the community and then be transferred into community life, the facility itself has become a long-term care facility.

That is appearing also at D'Arcy Place and AOC, the Adult Occupational Centre at Edgar, which were designed as short-term placement areas. They now have people with severe behaviour problems and severe medical problems which cannot be met in the community. We have people who are on the merry-go-round, who are discharged into the community to a group home, to another group home, another group home and to a hospital and to a psychiatric hospital or a correctional institution, and hopefully then, back into an institution where their needs can be met and addressed and they can live a more fulfilled life.

The interesting thing, especially with Oaklands, is that in spite of very widespread and significant lobbying by senior staff and some board members of that facility, there are a significant number, in fact the majority of families, who are opposed to its closure, and yet they're not being listened to. It seems a bit bizarre to me that there would be members on that board who would be advocating Oaklands's closure and yet are responsible for its operation. There seems to be a conflict.

Other senior citizens have the option to live in senior citizens complexes and, as we've heard, in institutions and facilities which provide long-term care for their particular needs, and where they can also enjoy the company of neighbours with whom they can share their cares and joys, who understand and who are willing to support them.

It's our contention that the people we represent, those with very severe, profound developmental disabilities are being discriminated against under this policy to close institutions. We are told that they need choices. They are not being given choices. If their choice is a group home, which is, as I said, not inspected, not monitored, once they are in the community they become the responsibility of that community, of those agencies in the community. The ministry, because of its refusal to track, does not know what is happening to these people. We know of people who are in very dire straits, living on the streets, being constantly tormented by people in the community because of their differences and because they don't fit in and who are living very lonely lives.


It is very clear to us that there is a need for specialized congregate long-term care for some people who have developmental disabilities. As I said earlier, we were disturbed to find out that this population was omitted in the discussion and the development of this bill for long-term care. They require long-term care.

There are some aspects of the bill in particular that we are very supportive of; for instance, the enhanced accountability to ensure that resources are directed appropriately to improved care and services for residents. This is a very positive move and obviously relies on some evaluation of what is happening and ensuring that there is accountability for the service to the person receiving it. Tied into that is the development of standards and criteria, which, again, if a person is discharged to a group home, are not standardized throughout the province. There are tremendous inequities in the system.

I heard a question earlier while I was listening to the presentation on service agreements. We are totally in favour of service agreements in that they empower the individual or the persons representing that individual to ensure that they are getting the services they require, and as those requirements change that service agreement changes so that their needs are being fulfilled and met.

I also like the idea of a funding formula which increases the ability of residents to age in place. For many of our people, changes are traumatic. To move even from one ward to another ward within the same facility can have a person regress two years in time before he feels comfortable enough and the people with whom he is working understand him well enough that he can again feel he is a part of that family grouping.

Also, as I say, from my understanding we have had a subgroup working with the Ottawa area and Rideau regional staff in trying to look at new ways in which people could be placed into the community from Rideau Regional Centre. One of the issues that came up was the issue of inspecting and ongoing monitoring. Apparently, the authorities there in the various acts -- there are various acts, such the Homes for Retarded Persons Act and the Developmental Services Act, but nobody's doing anything about them; nobody's inspecting these homes to ensure that the programs within those homes are meeting the needs. Program supervisors may be talking to program supervisors, but who's going into the home or who's taking the person out of the home so that he can fully and freely say how he feels about living in that particular home?

We also like the proposal of new sanctions for non-compliance. Sometimes it takes too long, as you probably read in the paper lately, with the closure of three group homes in Alberta, where a situation had been going on for in excess of two years before the minister, I believe, went in and said, "That's it, no longer can these homes operate." Our people are very much at risk.

We also like the initiative to share information, not only with the residents, but if the residents do not comprehend exactly what is going on or the schedule and services of that facility, their families can speak to the staff and know what's going on. We like the idea of a consistent policy and province-wide system for coordinating access for people.

We have three recommendations -- I guess they're basically requests -- because we have not been involved in this process:

(1) We feel that institutions should remain an option for long-term care, treatment and training of adults who are developmentally disabled and whose family or who themselves choose that option. They should not be discriminated against by not having that option available.

(2) We believe that the care, treatment and training, and the environment within these institutions should be upgraded to provide a full range of service, based on the standards set by best practice. There are tremendous inequities in the institutional system in Ontario. Some have very good day programs that people are going to; others have very little.

There's also a misconception in the community that the community is losing out on services because of the money that is going into facility care. In actual fact, since the beginning of the Multi-Year Plan, the institutions have been losing out and their services have been cut. While our professionals are diverted to the community to provide community care, our residents, through no fault of their own, are being left without speech therapy, physical therapy and other programs.

(3) Finally, and the most important, I feel, for this particular committee, is that adults who are developmentally disabled and who require long-term care, be included in and protected by the intent of the proposed legislation and that the responsibility for long-term care be shared by the ministries of Health, Citizenship and Community and Social Services for this group.

The Chair: Thank you very much for your presentation. We'll begin with the questioning. Mr Wessenger.

Mr Wessenger: I'd just like some clarification of your position with respect to institutional care. I understand your position that those people who are in institutions at the present time and have been for several years -- you're very concerned about the disruption caused by a complete deinstitutionalization. But I wonder about taking that a step further. The position has been put to me on many occasions by many persons involved in, say, the Ontario Association for Community Living, that it's a more ideal setting to have people in a group home setting, as distinct from a larger institutional setting and that people do much better in that type of setting. It was interesting, even, I think, that there was some indication from the Huronia group this morning that when you move to a cottage-type arrangement with an institution, you get much better development and social interaction in that setting.

I'd like you just to comment on that aspect. Do you disagree that the group home and the small units are generally a better way of dealing with these more difficult cases?

Mrs Paproski: I would think categorically every one of us would support smaller units of residential care, whether it be in the institution or the community. We have an outdated mode that institutions should warehouse people in large wards, where they basically are warehoused, where they are basically driven insane because they are living too many people in one very small section.

I think what has been most disturbing to me with the cutbacks to the institutional service in the last couple of years in particular is that as wards have been closed, instead of using the empty ward to split a ward and take 20 people and divide them, 10 and 10, into a home-like environment where they have their own bedrooms, a living room and can operate in a more family-like setting, that space has been taken over for whatever other purposes, whether it's office space or supplying things, and our ward population in almost all the facilities has increased, so that instead of having 20 in a ward, which we felt was over the maximum, we're now looking at 23. As we've said before, it appears to us that somebody is setting up the institutions to fail.

Oaklands, as I indicated, and Huronia and certainly Rideau have what we call transitional homes. Up until the Multi-Year Plan, the development was to get people living in more home-like environments, having their own little kitchen. That's all gone backwards.

So there is this outdated mode of what an institution should be, that it should be large wards, bars on doors, locked doors. That doesn't have to be. One can have a community which functions as a part of a larger community. For instance, Oaklands is right in the middle of Oakville. People go out to the community on a regular basis, people come in to them, yet they function in a very protected, secure environment and one to which they can relate.

I think one of the things we're finding with people who have been discharged to the community is that the stress of the community life is such that they are developing more problems, psychiatric problems. They cannot cope with that stress.


If I could just take you back -- I don't want to speak too long because I have two colleagues, I am sure, who could respond -- I visited an institution in Holland which was based on the group home models. There were not more than eight people in each home. One person had been transferred to the community at least twice and came back each time because he chose to. He was about 27 years old. He couldn't cope with the stress; he came back. He became the mailman of that facility, was a very important person and functioned very well. The option was there for him that whenever he felt he could try to go out again, he could go. But as long as that's where he wanted to be, where he had a job, where he felt secure and he was important and was sharing his experiences and life, that option was open.

Another was a 45-year-old man whose father had died. He had lived in the community all his life and had all his supports there. They have good supports in Holland. His mother needed a little bit of a holiday, so she left him for three weeks while she took a holiday. When she came back, he said, "Oh, I like it here." It was the first time he'd had friends, when he did not have that abnormal stress being placed on him to be normal when he was not normal. They said: "If you like it, you can stay here as long as you want. You can also leave when you want."

That's an option we want for our people. I really can only see it at this point in time being developed under this long-term care initiative, because there is a denial factor by proponents of deinstitutionalization: Put them out in the community and they will become normal. I'm sorry; it's a lifelong condition. They will not become normal. In actual fact, you make their problems worse by placing undue stress and by isolating them; they have no friends.

Mr Hope: I want to be careful what I say, because I got myself in some hot water around this issue.

Mrs Paproski: Well, I've got myself in hot water many's the time.

Mr Hope: The southwest regional centre is in a neighbouring riding to mine, and I am very familiar with the work they do there. That's all I'll say, but I know some of the issues you brought forward about making sure that the developmentally handicapped are included in the long-term care. I know the minister shares that same concern, and we are pushing to make sure that the developmentally handicapped are a part of and included in the long-term care initiatives, because a lot of the individuals are physically disabled and are older; I know in the southwest regional centre they are older people. It just makes sense, what you just said, to make sure they're included in it. Multiple disabilities could be there, and we have to cope with them. I'm going to cut out on those comments, just to raise that point.

Mrs Paproski: If I could expand on that, we're talking about people who are already in the institutions, but there are people who live in the community who may also require that type of environment. In fact, in the Ottawa Citizen last night there was an article by Ruby Short, a member of the local association, who appealed to the Minister of Community and Social Services when she was in Ottawa in June to provide larger units of care within Ottawa. She said, "I'm in my 70s, my husband is, we're both developing significant health problems and we have our 41-year-old son at home who requires 24-hour care, and the economics and the community simply cannot provide that type of care in a group home for him." We would be very pleased to see larger congregate care settings.

Ms Allingham: Just before Randy leaves, as the parliamentary assistant to the Minister of Community and Social Services, I believe, would you please take that message back to your ministry? Thank you.

The Chair: I didn't know he was being moved out as parliamentary assistant. Perhaps that means a cabinet shuffle is under way?

Mr Hope: I can only tell you what the papers say. Who knows?

Mr Peter Delsnyder: Aren't there some announcements being made right now?

The Chair: We have been in here, so we're glad you came to give us all this information.

Mrs O'Neill: Thank you, Margaret, for coming. You certainly do know this area as well as anyone, I'd say, in Ontario and likely Canada. I'm so glad you brought to the attention of the committee three things that I don't know are well known; that is, that the ministry does not track the group home admissions once the admission has been made or the group home established.

Another significant thing which comes out of the article that you mentioned from the Ottawa Citizen and from your own brief is that actually there have been more admissions to Rideau than to group homes in the last three years from Ottawa-Carleton and eastern Ontario. The group home admissions now depend on either death or serious illness because there are no group homes opening, even though there are these platitudes that, "Yes, we have to have community-based services." There are many people -- and I certainly have correspondence to prove it -- who are very like the family in yesterday's news release.

I would just like to say a couple of things to you. The sole choice model, which is a facility planning project term, seems to me to be utterly contradictory. "Sole choice": I really don't feel those two words are compatible, so I'm glad you mentioned that.

I also would like to thank you in particular for the letter from the Comeau family. I think that's something in writing; it's something that's on the record here now at Queen's Park, as well as your testimony. I have no questions -- as you know, I've been working quite a long time here -- but my colleague does.

Mrs Sullivan: I was very impressed some months ago when I received the first piece of material from Mrs Paproski from the Federation of Ontario Facility Liaison Groups. I had not heard of the organization before, and I was very interested in the documentation that was there, because of course Oaklands is just up the street from my home, although outside my riding. It certainly services people from my community and from the surrounding area.

Those parents have come to me in my constituency office fully aware and fully supportive of group home and community-based services for those who can be accommodated within that environment but feeling very strongly that a larger setting with a concentration of expertise for those who cannot cope with the group home setting is vitally important. They have also been extraordinarily uneasy since 1990, when the first announcements were made, as to what the schedule was, what in fact the plans were, what government was going to do to the people they cared about a great deal.

As we look at Bill 101 -- and I hear what you're saying about including the group of severely developmentally disabled adults with special needs in the long-term care formula -- I'm wondering if we could ask you to do some work and, through the parliamentary assistant, if the Ministry of Health could also do some more work to see where and how any of the proposals that are now included in Bill 101 could be enhanced so that the needs of your particular interests are met.

Is there adjusting that should be made, by example, to the funding formulas? Is there adjusting that should be made to service agreements, to the accountability provisions, to any of the other sections of that bill that would in fact make an accommodation possible so that people with severe, profound developmental disabilities who are aging -- which brings with it an additional concern, largely a health concern comparable to the concerns we have with aging in the general population -- can be brought to the table and we could have a frank discussion with the ministry about how this particular special group of people can be accommodated within the context of the long-term care system?

I think it's an important thing to do, if we can have some more particular help from you, and I'd certainly like to see what the ministry can put on the table before our hearings are finished.


Mrs Paproski: I appreciate that. We do labour under some difficulty in that we're all amateurs, all volunteers. We certainly do not have legal expertise, which I think is very helpful in drafting bills. If the parliamentary assistant would contact me and clarify some issues that maybe he thinks we should address, we would do our best to attempt to do that. We're looking at, as I say, an aging population, but we're also looking at people as young as 20 and 25 who maybe should not be in nursing homes. We have identified these people as developmentally disabled. They need programs to help them to develop their potential as far as possible and also to maintain the skills they have learned. We still would like to see them identified as a particular group of people with particular needs.

Just in relation to what Mrs O'Neill said, I'd like to make it very clear that over this year there will be no demissions, as they call them, from Rideau Regional Centre. Now, in some ways this makes us very sad, because we had a number of people of francophone descent who were all prepared to move out this year, but the funds for their dismissal or demission have been withdrawn and diverted to other centres, such as Oxford centre, which did not know it was slated for closure and now has a closure date. There are absolutely no demissions from Rideau Regional Centre this year, yet in the Ottawa-Carlton area the community is crying for money and saying, "It's because the money is in the institution." But here you had at least 30 people who were ready to go, and they've been told they cannot go. Something's going wrong with this whole system.

Mr Delsnyder: Before someone takes exception to Mrs Paproski's referral to the closure date at Oxford Regional Centre, it's not closure. They seem to want to shy away from that word "closure." They call it "zero population by April 1996."

Mrs O'Neill: That's even worse.

Mrs Paproski: Just like "zero admissions," yet we are having admissions all the time.

Mr Hope: Mr Chairman, I'd just like Mrs Sullivan's clarification of the information she's looking for. She's saying to table some information. What information specifically is she looking for from the ministry people?

Mrs Sullivan: I think the parliamentary assistant understands what I'm looking for.

Mrs Paproski: I hope he does.

The Chair: We'll sort that out.

Mr Jim Wilson: The latter comments from the vice-president remind me about a problem we're having in Simcoe county too in terms of Huronia Regional Centre when we deal with community living associations, which see a tremendous amount of staff being retained at Huronia Regional Centre and a staff ratio far exceeding anything we can get in the community-based settings. There's a lot of debate among citizens who approach their MPP wondering very much what's going on. We've had three group homes, as Mrs Allingham would know, built in Stayner, but we've no operating money for those homes, and I think a lot of people, rightly or wrongly, look at Huronia Regional and say, "Yeah, because of the unions they've maintained all the staff, but they've been decreasing the population of residents." There's a real problem there, and it comes to mind vividly as you describe the special needs of developmentally handicapped or disabled individuals.

Mrs Paproski: Could I give you some figures on that?

Mr Jim Wilson: Yes. Anything to clear the air would be helpful.

Mrs Paproski: We look at wage parity, and I do know the gap varies anywhere from 15% to 30%, community to facility, in favour of the facility. In spite of that, the Oaklands per diem cost is approximately $178. AOC goes up to about $250, and that's for total cost: That's medical care, vocational training, day program, education, physio, the whole caboodle. We know of homes which are receiving $240 to $500 per diem for residential care alone in the community.

Now, something else is wrong. I know in Ottawa there are more than 20 agencies delivering group home service and a few other services to developmentally disabled in the Ottawa-Carleton region. Does that mean there are 20-some executive directors drawing salary? I don't know what's going on, but those are the cost figures I have.

Mr Jim Wilson: You're right. I think Huronia Helpers -- just to clear the air, I agree with what Huronia Helpers said this morning, and it's probably reiterated in your brief, that there's not a lot of good proof out there that community-based group home care is cheaper than institutional care. In fact, the empirical evidence would suggest otherwise, and I think that's what you're indicating in your figures. I buy that argument.

However, we have the problem that some families prefer group homes, although it is the position of my party and has been for a number of years now that we must have the balance there of keeping institutions and other modes of delivering services in other residential settings.

That's why I want to ask you this: On page 9, when you're talking about what you liked in Bill 101, I thought I heard you say something about liking the new sanctions for non-compliance, new quality measures. I thought you said this would help in monitoring group homes. I wanted to make clear that group homes, of course, aren't part of this legislation. I know you know that, but I wanted you to clarify that for us.

Mrs Paproski: Group homes operated under MCSS?

Mr Jim Wilson: I'm open to knowledge on this, but unless they're a long-term care facility of some sort, I don't think this legislation is addressing group homes.

Mrs Paproski: Right, and that's why I'm requesting that, especially for severely and developmentally disabled people. I am speaking from a facility background, but we do know there are people at risk in the community living in group homes where that is not occurring, and I don't think that's right either.

Mr Jim Wilson: On that, I have a suggestion, and I think Mrs Sullivan had a good question and statement regarding improvements to Bill 101 itself that the committee's dealing with. You raise some very serious issues, and in my reading of Bill 101, it's going to be difficult to amend what the government's given us to alleviate some of your concerns. It will be difficult to amend this particular legislation.

So perhaps we should instruct the government to put a freeze on, to stop converting your institutions to long-term care facilities until we get this mess straightened out, until there are resources in place for developmentally disabled individuals. You mention a couple of facilities that sound like they've been converted or will be converted and absorbed into this long-term care reform. Am I right about that?

Mrs Paproski: They will be diversified to the community and then divested, so the facility itself will cease to exist.

Mr Jim Wilson: Does that mean, in layman's terms, that we could have very young developmentally disabled individuals who are in long-term care facilities run like nursing homes under this bill?

Mr Hope: They are in there now.

Mr Jim Wilson: I know we do, and the trend's been away from that, but I'm just wondering --

Mrs Paproski: Well, the trend is away from that, but I suggest you contact some of the children's hospitals, like CHEO, the Children's Hospital of Eastern Ontario, in Ottawa, and you'll find that there is a significant number of children being raised in that hospital because there is no other alternative.

Mr Jim Wilson: I've toured it.

Mrs Paproski: The reason young families are not applying for institutional care for their child is because, number one, they can't. They will not accept applications. It's only on short term that they will take them in and they certainly won't take the very young ones, and then one could be on a system of foster homes. You need that type of support. So they are not accepting people and children are being raised in hospitals. Is that a better environment than a family environment with an educational component, a health component, and which functions more as a community, where the family also maybe has better opportunities to visit and bring the child home to what he or she perceives as a normal environment, with the supports they need for visits and that sort of thing?


Mr Jim Wilson: I just want to make it clear that although I'm temporarily confused, I'm not giving you the opposition platitudes. I'm trying to to sort out in my mind what it is we can do to be helpful. I want to leave you with that, because I know the Chair's going to cut me off.

We want to be helpful, and taking up Mrs Sullivan's suggestion, perhaps a series of meetings outside of this committee would be helpful in trying to work with either this legislation or some other solution, because in my heart of hearts, I agree with you. I raised some of the other red herrings that are out there, but I realize from my experience with the riding next to Huronia Regional Centre that the expressed wishes of many parents are in danger of being ignored in this long-term care reform, and we want to be helpful.

Mrs Paproski: I'd like to thank you very much. I'm sorry we didn't get here for the first round of hearings, but we really couldn't get the information on long-term care and were told it was not an area in which we should be getting information. That's why, unfortunately, we're in at the last round.

Mr Jim Wilson: Thank you on behalf of everyone. You should be very much involved now because you've raised some tremendous concerns that are going to take the wisdom of Job, I think, to correct.

The Chair: You mentioned earlier, or somebody mentioned, hot water. I should note that I at one time felt a good deal of hot water, when I was in another position. But hot water, like cold water, can sometimes focus the mind, and I want to say, Mrs Paproski, that certainly over the time that I dealt with your association and with you personally, it's been a voyage of discovery and education. I think again today you have all provided us with a perspective and some insight on the relationship between the developmentally handicapped and the whole question of long-term care, and this is something that as a committee we need to look at and consider. As Mr Wilson says, whether it is something that can be dealt with directly in this act or in some other way, there clearly is an issue there that we can't just pretend doesn't exist.

On behalf of the committee, I would like to thank you for coming. We really appreciate your presentation today.

Mrs Marland: Can I just ask one thing for clarification?

The Chair: I wouldn't dream of not allowing you to ask a question for clarification.

Mrs Marland: When you said these young children could come home to their families and have all the support services in the family home, you meant the family of the child, did you? Or do you mean other families who are willing to look after these children?

Mrs Paproski: I think that basically the family of the child is usually the right selection, if they can have the appropriate supports. To an extent, that happens now with your special services agreement. Unfortunately, that runs out at age 21.

Mrs Marland: I'm meeting tonight with the parents of the children over the age of 21.

Mrs Paproski: Thank you very much. I hope I'll hear from you in relation to what we can do further.

Mrs O'Neill: Mr Chair, is the Hansard from yesterday ready yet? We were promised it in the afternoon today. Has that promise been able to be kept?

The Chair: We'll just check through the Hansard office.


The Chair: Would the representatives from the Baycrest Centre for Geriatric Care come forward. This will be our final presentation this afternoon before the evening sitting. We welcome you to the committee. Would you be good enough to identify yourself for Hansard and then please proceed with your brief.

Dr Moshe Greengarten: Thank you very much. My name is Moshe Greengarten. I'm vice-president of public and community affairs at Baycrest Centre for Geriatric Care in North York.

Obviously, it will not be possible to address Bill 101 in depth within the available time limits. We will be submitting a written paper to you by February 18 setting out our position in detail and with specific recommendations for amending the legislation. Therefore, I shall confine my brief remarks to four key aspects of Bill 101: first, the regulations, second, service agreements, third, placement coordinators and, finally, the funding system.

With regard to the regulations, it is obvious to anyone who reads through this legislation that so many critical issues are to be dealt with through regulation. It is therefore virtually impossible to comment intelligently on the proposed legislation. There are many areas of concern which may easily be dispelled. At the same time, there may be other regulations which raise significant concern and would suggest the need for amendments to the legislation itself.

To its credit, the government has until now conducted an open process of consultation and discussion regarding reform of the long-term care system. A full and open airing of the issues at stake in this legislation demands that the draft regulations be published and that interested parties have an opportunity to review and comment on them before Bill 101 is passed.

The second matter relates to the service agreements. The proposed service agreements appear to be an exercise in how to create as much red tape as possible. Let me give you one example. According to the legislation, the service agreement may contain clauses dealing with specific classes or levels of care and the number of beds to be so designated. Clearly, this is intended to control government expenditures and is understandable. However, does this mean that only the funding will be restricted? How will a facility defray the costs of care for residents whose needs increase during the period of the agreement? Will there be penalties for facilities which exceed the prescribed allocations of beds? Will it be possible to apply voluntary contributions to defray the cost of care?

The draft service agreement, which is contained in the Long-Term Care Facility Programs and Services Manual -- I don't know how many of you are familiar with this document -- and which sheds some light on what the regulations may say, further restricts facilities from transferring funds from one envelope to another; for example, from nursing and personal care to program and support services. Does this mean that a facility that is able to achieve efficiencies in the delivery of nursing and personal care must return funds rather than use them to enhance other aspects of care? Does this mean that it is not in the interests of facilities to achieve efficiencies? Does it mean that if a facility happens to have a lighter mix of residents in a particular month, it cannot apply such funds to other worthy programs or one-time projects?

Clearly, there are more questions than answers at this point. The regulations will deal with some of these. However, our fundamental concern is that the concept of service agreements flies in the face of current principles of total quality management, which the Ministry of Health has itself endorsed. This approach unduly restricts the freedom of action of voluntary boards of directors to govern their facilities in the best interests of their communities. These restrictions, combined with others set out in Bill 101, effectively remove the ability of voluntary boards to govern their own organizations. They might as well become public institutions, managed and operated by civil servants.

The third matter regards placement coordinators. We are extremely concerned that the proposed placement coordination system will erode the multicultural nature of many of our long-term care facilities in this province. The legislation suggests that admission will be based only on the applicant's health care requirements, with little or no consideration of social needs, such as the need for an environment sensitive to cultural, religious and linguistic needs.

Since we have no knowledge of the proposed regulations, we believe it is instructive to examine the new application form contained in the draft manual I referred to earlier. This 19-page document contains all manner of questions concerning the applicant's need for physical care, record of hospitalizations, use of community services etc. There are only two questions, taking up a grand total of four lines within a 19-page document, related to the applicant's ethnic background.


Let me quote from the first page of this application form, section 1, part D: "Languages." First, second, preferred. "Would applicant wish alcoholic beverages?" Yes or no. "Would applicant wish to smoke?" Yes or no. Next question: "Religious, cultural or lifestyle preferences that would influence choice of facility." There are three lines to complete.

It is insulting to the multicultural communities of this province to suggest that the rich heritage of these communities can be equated with smoking and drinking preferences.

Bill 101 states that long-term care facilities must admit applicants approved by the placement coordinator unless grounds for refusal exist in the regulations. What are these grounds for refusal? What assurances can you give multicultural communities that the multicultural fabric of these organizations and facilities they have developed, for which they have contributed significant monetary resources and for which they contribute hundreds of thousands of volunteer hours, will be sustained? We see no evidence that this is the intent of the proposed legislation.

In short, we fear that ethnic seniors will be abandoned by this legislation, that the system of care we have worked so long and so hard to build will be dismantled. It is essential that the principle of supporting long-term care facilities which serve the needs of multicultural and religious communities be included in the legislation itself.

Implicit within Bill 101 are the details of the new funding system, which is the fourth item I wish to speak to. According to statements of the minister, this new funding system will enhance the quality of care delivered to Ontario seniors. We do not disagree with the philosophy of the government to provide equitable funding for all residents of the province's long-term care facilities. However, we fully endorse the position of the Metropolitan Toronto paper presented to you yesterday on this matter, and I quote: "The proposed scheme threatens to introduce a new standardized level of mediocrity into the long-term care system. This is the real threat to seniors and the future of the long-term care system." This is the position we took in our response to the government's Redirection paper, and this is the position we continue to hold today.

The finest institutions in this province, which are admired throughout the world, are threatened. These include such facilities, just to name a few, as Baycrest Centre, Providence Centre, Metro homes for the aged, Villa Colombo, the Niagara Region Homes for the Aged, Rainycrest Home for the Aged in the north and St Patrick's Home in Ottawa -- the very facilities, I might add, that have been in the forefront of the development of community services for the elderly for decades.

The proposed funding system threatens to destroy the quality of care which communities across this province have worked tirelessly to achieve. It devalues this work. It says: "We don't want quality for our senior citizens. We want mediocrity."

The Chair: Thank you very much for your presentation. I would just note that you asked if we had a copy of that document. We did receive it today, so members of the committee haven't had a chance to go through it in detail, but we do now have a copy.

We'll begin the questioning with Ms Sullivan.

Mrs Sullivan: Thank you very much. I couldn't agree more that in order to judge this piece of legislation, given that it's presented in isolation from other long-term care policies and apparently other legislation that's going to come forward, we have to see the draft regulations. I will therefore ask the parliamentary assistant if he will table with the committee draft regulations that will be accompanying this bill.

Mr Wessenger: As the member well knows, regulations are not drafted until legislation is completed, and it would be premature to have regulations drafted before this legislation comes out in its final form.

However, I think we do have the manual out. I understand that there will be further drafts of the manual and that there will be a great deal of consultation with respect to the manual, and I also understand the regulations would be based on the manual. If you're looking for direction with respect to the regulations that will be put forward, I think the manual's a good basis for that investigation and information.

Mrs Sullivan: On this point, I'd be interested in just pointing out what the regulations will prescribe. They will prescribe the funding. They will prescribe the extraordinary payments. They'll prescribe the payments by residents, the care and services which residents will have to pay for or will be able to pay more for. They will prescribe the eligibility for admission to a home. They will prescribe the assessment of the resident, the plan of care, the plan of care revision requirements, the quality assurance plan -- even though we think that's the wrong word, because somebody didn't understand what he was doing. They will prescribe the notification about the service agreements. They will prescribe the notification to residents about the access to the plan of care. They will prescribe the complaints procedure. They will prescribe "any other matter." They will prescribe the required types of accommodation, the care, the services, the programs that are going to be offered to residents, the required bed capacities which have to be set aside for residents requiring certain kinds of care. They will prescribe short-stay accommodations and the nature of those.

Mr White: This sounds like one of Jim Wilson's questions.

Mrs Sullivan: Have you read this bill?

Mr White: Yes.

Mrs Sullivan: Well, it's all in the regulations, and nobody has seen the regulations. It is very difficult for this committee and for the public and for professionals who are appearing before us to know what is going to happen to the system when nothing is in front of us. I have no questions.

Mr Jim Wilson: I would echo the sentiments of Mrs Sullivan. It does put us in a difficult situation. As the Chair correctly pointed out to Dr Greengarten, we just received the document you referred to. I know it must be terribly frustrating for professionals such as yourself to have to deal with this.

I do want to thank you. I want, first of all, to inform you that we haven't got the Metro presentation yet, but I did read the newspaper article which contained that quote and found it to be quite interesting. As a member of the opposition, I thought it was refreshing that certainly yourself and Metro homes for the aged and the organization are not mincing words when it comes to very strong convictions about this legislation. Maybe you can elaborate for us and, while you have the opportunity, give all members of the committee a sense of what you mean by the new funding formula forcing you to deliver mediocrity across the board.

Dr Greengarten: Very specifically, it is our understanding, based upon public announcements of high-placed civil servants in the long-term care division, that the per diem funding for long-term facilities in this province will be approximately $90 per day and that facilities whose funding exceeds that level will have their funding frozen or red-circled at current levels until the average funding level rises to the existing funding level for those facilities. This means that the funding of these facilities, which in the case of Metro, as was published in the newspaper, is at $135 a day -- much lower, I would point out, than the institutions noted by the previous presenters for the developmentally handicapped. Our own per diem is about the same, and most of the institutions I referred to have per diems in the same range.

It's not hard to figure out that based on an inflation rate of 1%, 2% or 3%, our funding will be frozen for many years to come. We will have no choice but to reduce the quality of service in order to make ends meet. Now, if it is not the intention of the government that our funding be frozen, then we would welcome a statement to that effect, but based on the information that has been made public to date, we have no choice but to believe that our institution and similar institutions are threatened.

Mr Jim Wilson: Thank you. Mr Chairman, through you to the parliamentary assistant for the Ministry of Health, perhaps Mr Wessenger would like to take the opportunity to clear the air on this issue. Will centres like Baycrest have their funding frozen, as reported in the newspaper? This is the second presentation today. We also had Providence Centre with the same concern and I know we'll have many more, so perhaps you could just clear the air and we won't have to go over this ground again.


Mr Wessenger: The comment I'll make is that I think we'll have to wait until a decision is announced in respect of these matters.

Mrs Marland: Oh, that's a great answer.

Mr Jim Wilson: But you're touting figures like $647 million for long-term care reform and $200 million into this sector, and you know $150 million of that's going to be made up of increased user fees. You seem to know a lot about your funding arrangements. Surely to goodness you can answer this presenter's question, which is a rather serious one, to say the least.

Mr Wessenger: I could ask the presenter a question: How does one justify unequal funding with respect to institutions which are supposed to provide the same service across Ontario? How do we justify the situation where some institutions are funded more than others? I'd like the presenter to answer that to the committee. That's my question. How can you justify a situation where government makes preferences for one centre over another, unless you have particular funding for a particular research project or something of that nature? I would like an answer to that question.

Mr Jim Wilson: I'll let the presenter speak for himself, but I would imagine that many of these centres, like Baycrest, are offering a Cadillac service. What you're going to force them to do is to offer the exact same service as other centres that you've been underfunding for years. I think that's the point here, that the residents of Baycrest are going to be asked to take less service because you're going to freeze their budgets for the next few years, all in the name of equality.

When we talked about long-term care reform, the government wasn't very honest and forthright about this particular point or I think there would have been bloody murder to pay from a lot of residents of centres like Baycrest, Providence Centre and St Patrick's Home in Ottawa etc.

Mr Wessenger: The only thing I can say, Mr Wilson, is that I don't know how I can justify to my constituent who resides in a home for the aged in the city of Barrie that someone in Baycrest gets a much higher level of service than the --

Mrs Marland: No, you just bring everything down to the lowest common denominator. It's called mediocrity.

The Chair: I wonder if we might allow the witness to comment on this whole issue.

Dr Greengarten: I'd be delighted.

The Chair: We'll have our opportunity to debate it, but we really are here to listen to you.

Dr Greengarten: Thank you. We would certainly agree that it is neither fair nor appropriate for the residents of some long-term care facilities to receive benefits and services that other residents of other long-term care facilities do not receive. Is the standard we are aiming for in this province based on a level of mediocrity or worse, or is it based on proven, established, high-quality standards, and should we be striving to fund the care of all residents of long-term care facilities, all seniors in this province, at a high-quality level, a level which is admired around the world? That's the question I would ask. We would submit that it should be the goal of this province to fund the care of seniors in this province at that high level.

Mrs Marland: Well said.

The Chair: Mrs Marland, did you have a question, before I go to the other members?

Mrs Marland: I don't actually have a question, but I just hope the government members are listening.

Mr Hope: We always listen, Margaret.

Mrs Marland: I think what Dr Greengarten has just said is what your government needs to hear, and I say through the Chair to the parliamentary assistant, Mr Wessenger, that yes, you can go back to your constituents and you could tell them you don't believe in mediocrity and you don't believe in bringing everything down to the lowest common denominator.

Here is a world-class facility, and I'm glad Dr Greengarten mentioned that it is known around the world because of its leadership in care of the elderly. I don't know what they're going to be doing now with planning for the future, as their future has just been pulled out from underneath them.

Since Mr Wessenger was able to ask us a question, Mr Chairman, can I just ask him when the announcement -- he said we'll have to wait until the announcement. Maybe Mr Greengarten would like to know when the announcement's going to be made, whether or not they're going to be red-circled.

Mr Wessenger: I don't know whether the minister indicated in her statement. Would I be correct that there was an indication by the minister of the approximate time?

Mrs Marland: You don't know what's going on, then. Is that it?

Mr Wessenger: No, I'm just trying to recall what date she indicated. I'm sure it's in Hansard, but I don't recall.

Mrs Marland: So you don't know what's going on; otherwise you wouldn't have to refer to Hansard.

Mr Wessenger: I don't know: It might be the end of March. It might be --

The Chair: We'll check that out. We'll move to Mr O'Connor.

Mr Larry O'Connor (Durham-York): I know that in the process of these committee hearings we sometimes get a little bit carried away, and some of the partisan nature of the House that we see so often does sometimes get reflected in the committee hearings.

I have heard a lot of great things about Baycrest. When we have a chance in committee hearings like this to hear from different people providing a service that we're now contemplating changing and trying to make improvements to, of course we then go to the experts and ask them, the people who are providing the service. In the course of this discussion just now, we've heard people saying: "How come the bureaucrats haven't done it all? How come you haven't got all the answers?"

You referred to the draft document. You talked about the cultural aspect of it. What I would like to ask you, because you are more of an expert than we are -- I don't know whether or not you've been involved in the consultation with the draft document; perhaps you can explain some of that to us committee members, how you've been involved. You talked about the multicultural aspect: Maybe you could give us some suggestions of what you would like to see put into the request-for-admission form. Always looking for ways of improving things, I would like to pose that as a question to you.

Dr Greengarten: When we assess an applicant for admission to Baycrest, we take great pains to explore his or her background, with particular reference to his or her life experiences. I think the average age of residents of long-term care facilities is over 85; certainly in our own facility it's well over that. Therefore, we're looking to find out about their life experiences, how their life experiences have formed their current needs and how we can meet these needs. Essential to this picture is an understanding of their cultural background, their religious interests and needs. We want to know, for example, where someone was born, what their family experience is; how they came to this country, if they were immigrants, why they came to this country, what their immigrant experience was. We want to know how their culture was instrumental in their lives, what their education was, what organizations they have belonged to, have been active in, how their family has been involved in their community, what volunteer work they have done for their community, what education and cultural involvement their families had, their children, their other siblings etc.

Our own assessment of applicants takes at least two pages, two pages of single-typed text, just to describe the life experience of the individual, with particular reference to his or her cultural and religious heritage and beliefs and life experience. This is really the guts of what it is to take care of someone in a long-term care facility. It is a place, hopefully, where people go to live, and not a place where people go to die. In order to enhance their lives and their life experience, we have to know something about that life. We have to know how to continue to provide quality for that life. So I welcome your question.

Mr O'Connor: You didn't address the part I had asked about, whether you'd participated in the consultation. As you know, this is a draft. If you haven't, perhaps we can share what you've said with the people preparing the next draft, because I think that's important.

Dr Greengarten: I have not personally participated.

Mr O'Connor: Has somebody from your facility had a chance --

Dr Greengarten: I believe not.

Mr O'Connor: Then I thank you for making this submission to the committee, because you've just added something that I'm sure our bureaucrats who are taking a look right now at the manual will find of interest, so we've certainly gained something by you coming today.

Dr Greengarten: Thank you.

The Chair: The last question, Mr White.

Mr White: I was impressed with your presentation; I'm sorry I didn't catch it all.

I formerly worked in a home for the aged in Durham region, and although I wasn't employed by the home -- I was the only person who had an office there who was not. I have been continually impressed with the quality of care, the quality of respect for the individuals there that isn't universal in all long-term care facilities, to put it gently.

The concern that many people have in facilities, such as the one I came from and where I was just last week again, is, how do we preserve this quality of care in a larger environment? Baycrest, of course, is famous for not only the quality of care and the sensitivity you've spoken of, but also for being, frankly, very innovative in the care for the aged and in the care for the aged in the Jewish community. Those are very serious concerns. How do we maintain that, when it seems as if our perch may be eroded?

I want to commend you for taking the time to make this very careful presentation and hope that you keep up with it.

Dr Greengarten: Thank you.

The Chair: Thank you very much for your submission. I believe you indicated that your organization would also be sending along a printed document later this month.

Dr Greengarten: That is correct, yes.

The Chair: We look forward to that as well, but thank you again for coming to the committee.

Just before rising, I remind committee members that we will be resuming at 6:30 sharp. We have four presentations this evening. We are adjourned until 6:30 sharp.

The committee recessed at 1714.


The committee resumed at 1835.

The Chair: I would like to call this evening's session of the standing committee on social development to order. We are meeting to review Bill 101, An Act to amend certain Acts concerning Long Term Care.


The Chair: Our first witness this evening will be representatives from the White Light Hospice Foundation. We want to welcome you to the committee, particularly for coming this evening. We've had a large number from the Metropolitan Toronto area, and in order to really try to accommodate everybody we're including some evening sittings, so we hope that hasn't been too much of an inconvenience for you. We welcome you to the committee. We have a half-hour, and if you'd be good enough to introduce yourselves for electronic Hansard, please go ahead.

Dr Geoffrey Norris: Thank you, Mr Chairman. My name is Geoff Norris. I am president of the White Light Hospice Foundation. We do have some documentation which we've given to someone who is passing it out. I'll be referring to this documentation which might help you to follow my presentation. Do you all have that documentation?

The Chair: Yes, we do.

Dr Norris: Before I continue, I'd like to introduce the team representing the White Light Hospice tonight. With me are Shirley Henry, chairperson of the foundation and of the board; Anne Norris, who is the founder of the foundation and occupies the position of vice-chair; and Mirabel Palmer-Elliott. Mirabel is executive director of the foundation. Mirabel is a very important person. She's the only person on the foundation who receives a salary and she does an enormous amount of work for a very small amount of money. No one else is paid, but we've all put in literally thousands of hours into pursuing the topics we'll be discussing tonight.

What I want to do, and I'm turning to page 2 of your documentation, is to first make a few introductory remarks about the White Light Hospice and tell you why we think we are well qualified to address you on certain topics. We'll then make some definitions, common words that are sometimes misunderstood. I'll then turn to Bill 101 and tell you why we think palliative care and hospices should be included in Bill 101 in a rather explicit way. We'll identify gaps in the system. Since the aged are a target group of Bill 101, I want to bring in the situation regarding cancer and aging. There's a very close link. I'll then turn to certain special topics regarding women as care givers, the single-person dwellings and the needs of certain ethnic minorities. This will lead on to a discussion of consumer choice and, perhaps the best bit of all for you people, the financial implications, which are not horrendous.

There's not much time. I plan to spend approximately 15 minutes discussing this, which should leave plenty of time for us to try and answer any questions you might have when I've finished. Is that acceptable?

The Chair: Yes, that's fine.

Dr Norris: Turning to page 3, I'd just like to introduce what the White Light Hospice Foundation is all about. It's embodied in our mission statement: "The White Light Hospice Foundation is dedicated to the alleviation of suffering in all its aspects in terminally ill cancer patients, to maintain the quality of life in its final stages and to better prepare the patient for death in a tranquil, dignified and humane setting."

We've been a volunteer, non-profit organization for several years. The purposes of our foundation were set out in our letters patent, which not only provided us the means to provide services for palliative care for the terminally ill and to operate a hospice, but also to undertake research -- we've done lots of that -- to promote public awareness and to educate the public in the needs of the dying, outside a hospital environment, consistent with their social and cultural habits. It's in this latter regard that we're here tonight to make a plea in this regard.

Palliative care has been used many time except explicitly in Bill 101, although I'm quite aware that in the debates the matter of palliative care has been raised by members from all sides of the Legislature. Palliative care is defined by the World Health Organization. This was defined also in your Hansard records, and I want to read just parts of this definition which are important to understand.

Palliative care is the "active total care of patients at a time when their disease is no longer responsive to curative treatment and when control of pain and other symptoms of physiological, social and spiritual problems is paramount. The overall goal of palliative care is the highest possible quality of life for the patient and the family." It affirms that dying is a normal process. I think it's important to understand at this point -- and you can read the rest -- that this is an affirmation of the quality of life. We're dealing with the living. It's absolutely important to understand that. Palliative care is a means of dealing with the living to enhance the quality of life.

From that let's turn to page 5, which covers the meaning of "hospice." It's a word that has several meanings. They're all related, but they're all distinct.

Firstly, it is commonly used as a synonym of palliative care, much along the lines that I just read in the previous item.

Secondly -- and it's important in these two subsequent meetings to understand the difference -- "hospice" can refer to an organization or an activity devoted to delivering palliative care within the community, and of course that's an important point, to patients living at home, assisted by family and friends or volunteers. I will try and qualify this, when I refer to that type of hospice, as a community hospice.

Thirdly, and this is the definition or meaning that is of most interest to us at the White Light Hospice Foundation, it's a freestanding facility staffed by professionals assisted by volunteers, is distinct from a hospital and is dedicated to delivering palliative care to the terminally ill and their family in a home-like environment, but not, significantly, the home. We refer to this as an inpatient hospice. Sometimes it's called a freestanding hospice and sometimes, if we really want to put the point home, it's a freestanding inpatient hospice. Bear those three meanings in mind.

I'm on page 6 now. Let me turn to Bill 101. I've spent many hours reading it and it has made me very thankful that I'm not an MPP. To read statutes as a living I think is something you deserve every possible respect for. But Bill 101, once I figured it out, seemed to have as a target the elderly, among other groups, and this is one of our principal concerns. The elderly, in our view, must be explicitly, and I emphasize explicitly, assured of the following: that in the gobbledgook of the statutes specified classes or levels of care, services, programs and goods in the approved institutions addressed in Bill 101 must include palliative care. Specifically, we must introduce and bring in the concept and real usage of inpatient hospice care, which I will elaborate on in a minute.

Secondly, long-term care in the various approved institutions must include a sensible and identifiable interface with chronic care on the one hand and palliative care on the other if such must prove necessary. At last count that I read, there was something like 70,000-odd beds in the the sector of nursing homes, charitable homes, municipal homes and homes for the aged in the province. Let's face it, a heck of a lot of people are using those beds to die in. There's no doubt about it. We all know many of our aging friends and relatives who die in these homes. Sometimes that's just fine. Sometimes they need something special, and this is where we need to explicitly identify the interface where long-term care moves into maybe chronic care and/or into palliative care.

I think the sponsors of the original document of long-term care spread across three ministries. That underlines the fact that we are dealing with a situation that is somewhat blurred in terms of the normal administrative lines. We can't neatly package it as health care or long-term care or care for seniors. We have to note that there is this spectrum we're dealing with.

Finally, with regard to Bill 101, I think we've got to point out that any future bed closures in hospitals -- and I know this isn't directly related to Bill 101, but it's going on and we've got to address it -- have got to be closely coordinated with the development of alternative facilities and the knowledge that the community cannot deal with all palliative care in the home setting.

I'll get to this in a little more detail later on, but although dying at home and having volunteers to help and professionals from time to time is great, sometimes it just doesn't work. This is where the concept and the practice of an inpatient hospice is necessary, and I'll demonstrate a highly cost-effective development that we just really have got to look into more closely.

Let's have a look, on page 7, at the gaps in the system. It's clear, from the record of the debates I've read, that there are gaps in the continuum for long-term care through chronic care to palliative care. These have got to be identified in future planning, and they've got to be specifically addressed in the legislation. You've done as good a job as you can harmonizing these complex bills, but what is missing is the regulations, and this has come out very clearly in the debates. We're all waiting for the regulations. Maybe they're available now, but I certainly haven't seen them. They've got to specifically address the concept of palliative care and hospice care.

Another gap is that the users of palliative care are not confined to the elderly. I've been talking about the elderly, that's important to us, but cancer can strike any age group. The palliative care needs of people of all ages and their access to inpatient hospices and palliative care must be assured in care plans and their implementation.

There are also certain other diseases where people have a critical need for palliative care. I read a graphic account in Hansard of the second reading of Bill 101 regarding someone who was dealing with a relative or friend with motor neuron disease, which is another type of disease, among a few others, that could be handled in the hospice setting.

There are undoubtedly inadequate details available on the current government's policy on palliative care. The minister has made statements to the effect that a modest amount of money is going to be available for education in the field, and of course it's very good to have education in this field, but we've got to have more of a plan, that is: What are the goals? How are we going to get there? What's the mechanism? Not just some vague sort of statement like, "Yes, we'll look into this"; we've got to have something rather more specific.

Finally, as you all know, these items have been addressed by you and your colleagues in the various debates as published in Hansard.

Let me turn now to page 8 and the question regarding the link between cancer and aging. There is no doubt that the population is aging, that the demographic profile is changing. In the next 10 to 20 years, we're going to see a tremendous swing from middle-aged to old-aged people dominating the spectrum. In several instances, this has been included in the debates on Bill 101, of which I've given you one of several references.

There's no doubt that many forms of cancer show a higher incidence in the elderly. The chances of contracting cancer rise markedly in the 50-plus age group. If you care to look at the rather morbid statistics on deaths from cancer, you'll notice that in 1990-91 there was a marked increase in the number of men in the 60-plus age group dying from cancer and a few years later, on average, for the women. So the elderly are at a high risk of cancer, and they tend to die in that bracket.

We also know from our research that hospitals are registering significant increases in cancer admissions to acute care facilities, and many of these end up in terminal stages of the illness. One of the local hospitals reported a tenfold increase in the last 10 years in their admissions.

Perhaps the most horrifying thing of all is that in Toronto alone -- and I emphasize Toronto because we know Toronto best, but it applies to the province -- there's an average of almost one person per hour dying of cancer. That means by the time I get back to my car tonight to pick it up, if it's an average day and night, one more person will have died of cancer. This goes on 24 hours a day, 365 days of the year, and it's going to get worse. It's not going to get better unless there's a major breakthrough.

So your urgent attention, our entire population's urgent attention, is required to address the palliative care needs of the terminally ill now, right now, and also in the immediate future as this elderly group, who are at a high risk of contracting and dying of cancer, expands.


Let's look at a few special problems, starting on page 9. I'll address first the question of women as care givers. Traditionally, women have been providers of home care. It's always mom or the sister or the daughter who've been looked upon and called upon and effectively pressed into service to look after someone, starting off with just a mild thing like a dose of the flu, but very often people in the terminal stages. Who's looking after them? Women. Not often men -- there are some very good exceptions to that -- but very often women.

We all know women are moving outside the home to enter the workforce. They're becoming a very significant proportion of the workforce outside the home and their traditional role as care givers is an additional burden for them with the system, and sometimes it's an impossible burden. There's only so much any person can do in one day. They can't go off to work in the morning and come home at night -- hopefully, the person during the day who is ill in the home has been looked after by someone -- and then spend the evening and nights looking after them. Palliative care is a commitment 24 hours a day very often.

Of course, that brings up the whole question of care for the care giver. Who looks after the care giver when the traditional care giver is the only one left at home? As I pointed out, there is a linkage between women tending to live a little longer than men, and particularly not contracting cancer at quite the same stage, although I know it's a very complex topic and I certainly don't want you to think this is the final word on it.

In the case of the elderly, the sheer physical work of looking after someone in the terminal stages of a disease is simply impossible. It's heavy, heavy work; it's heartbreaking work and it will break the soul. You can't put this all on to the elderly to look after their elderly partner.

Finally, in this particular case, I would point out that if we could introduce inpatient hospices into the long-term care system, this would address many of these needs.

Now let's look at the situation of the single person. Single dwellings are on the increase. Statistics Canada has documented this in great detail and these people have special needs, just like everyone else, 24 hours a day when they're terminal. If they're on their own they've got an option: Go out and buy the services, but around-the-clock care from professionals in the home is available at a price which is beyond the reach of all but the wealthy. There's no doubt about it. You can get it and there are some extremely fine agencies that provide this care, but the average person just could not afford it. Again, we will point out that inpatient hospices would provide a cost-effective alternative for the terminally ill in this particular category.

Let's turn, on page 11, to the needs of the ethnic minorities. That's a complex issue. Ontario and much of Canada, particularly Toronto, is home to many ethnic minorities that have different values, cultures and traditions and we know that some of these do not accept care in the home for dying family members.

In parts of Toronto there are certain local hospitals that have acute care facilities which are overcrowded with terminal patients, many representing these groups, who would be better placed in an inpatient hospice if care in the home was inappropriate or impossible. Clearly, choices are necessary for all consumers.

I'd like you to look at page 12. This will take just a couple of minutes to explain, but I think it will explain in a way that will clarify our point to you.

This is a table showing the choices for patients in the community. I've arranged this table so there are three columns. The top row gives a brief description of various types of patients and the bottom row of boxes shows the the sort of streaming that can occur if we could set up a proper coordination team -- or a placement coordinator, as has been referred to in Bill 101 -- to sort out the various choices and preferences of consumers in the field.

In the left-hand box at the top, this represents patients with homes and families that can accommodate them, and with friends and family participating in the care of someone who is entering a very serious illness. These could occur in small towns or cities. Very often they're wealthy areas and they tend to be people who want to be at home.

Then there's another group, and this is just a model. Bear this in mind: There's also shades of grey in between the black and white of models. This central group would be patients without home or family and friends who would be able to provide care. They would be people perhaps in single-person quarters, either in inner-city, small apartments or other inconvenient dwellings; perhaps in rural settings. They'd include elderly or people who do not want to be institutionalized. It's very important to realize that in surveys done, a very large portion of people who are in a situation of having terminal care do not want to be in a hospital when they die.

Then there are, contrariwise, people who maybe have houses but not enough support to stay at home after their disease has reached a certain point. These could be city dwellers or rural dwellers or people in the suburbs, but they'd be people who like the comfort of regulated care. Some people just like it. If they're going to be sick at all, they might as well be in a hospital, and they like the regulation.

We would see a coordination team -- or a placement coordinator in the Bill 101 vernacular -- perhaps working closely with the district health council, with which we're already in discussions on this issue, that would provide health care delivery with choices allowing for these ethnic, financial, spiritual and geographic preferences for both the patient and the patient's family. This would lead, at the bottom, to three streams. They're sort of models which are modalities, which give an idea of the sort of choices that we feel people in Ontario should have.

In the left-hand column, after diagnosis of the palliative state of the patient, some would naturally fit into a home care setting. They'd have the VON or the St Elizabeth group to manage symptom control. Community hospice programs: Bear this in mind, those are the people who provide a service to link up in the community and the home with the family. They would look after these people in the home. Death would occur at home. If there were some complications, there very possibly will be a need to transfer the patient out of the home into an inpatient hospice or a hospital, as appropriate.

The central box represents those people who would initially live at home. They would have a preference, or a need as the case might be, to attend day hospice -- this is a concept that I can explain later if you wish -- but eventually would end up in an inpatient hospice; that is, it's a home away from home. The death would be in a homelike environment with the family participating in the care, but there would be a full complement of professionals to make sure that the proper needs of the patient were addressed. Very often they have very heavy nursing needs, physical needs, pharmacological needs.

Then, finally, the third model would be those people who prefer the comfort of regulated care. They could go to one of the existing palliative care units, and there are a number of very fine examples that exist in hospitals. Sometimes there's a separate unit; sometimes they're scattered beds throughout the hospital. But in any event, there would be pain teams and palliative care consulting teams that would assist the patient to die in hospital with excellent backup.

Finally, on page 13, I'd like to briefly outline to you the financial implications of bringing in an inpatient hospice. First of all -- I've actually got the presentation slightly back-to-front -- I'll start with the middle point on your page 13. Chronic care and acute care beds will continue to be used for terminally ill patients, overloading an already strained system in a quite inappropriate way. There's no doubt about it; if someone gets that sick, they're eventually going to end up in hospital if there is no other alternative. The alternative we want to see introduced is an inpatient hospice.

We've done some very detailed studies which I've no time to go into right now, and we've got some very talented people in our organization familiar with accounting and care practice in nursing homes and homes for the aged and so on, and we know that we can bring in an inpatient hospice at a cost of much less than $400 per day per bed. That is much less than half the cost of a bed in an active treatment hospital. Some active treatment hospitals run about $1,000 a day; some are rather more efficient and run at less. We can run a hospice bed at $400 a day, or probably closer to $300 a day.

That's the very good news, that we can actually save money and take the pressure off the hospitals. Remember, hospitals are shrinking. So next time you get sick you're going to have to fight a little harder to get a bed in a hospital, and sometimes the reason you can't get in quickly is because someone is occupying an active treatment bed and is dying, not being actively treated at all. It's in all our interests, because we all have a vested interest in death. It's not a thing to think about too long, but nevertheless we do.


On page 14 are my summary and conclusions. What we want you to understand is that terminally ill patients must have choices. There must be a comprehensive government policy on palliative care. It's urgently needed. We want to see the plan, not just a few hints about what's going to happen. Palliative care should include delivery in inpatient hospice settings which provide a unique and much-needed complement to existing palliative care services in hospitals and in the community, and which would complete the continuum of services for long-term care.

I thank you for your time. I hope I didn't run over too much. I think there's a little time. If you wish to ask questions, I'm sure we'd be happy to try and address them, either Anne, Shirley or Mirabel.

The Chair: Thank you, Doctor. We do have some questions, so I turn first to Mr Wessenger.

Mr Wessenger: Thank you for your presentation. I'd like to know something about how you actually operate now with respect to, for instance, how many beds you have and what area you serve, how people get referred to you now. Lastly, do you offer any community services or just inpatient? Is there any coordination with the community hospice services?

Dr Norris: Shirley, would you like to answer that?

Ms Shirley Henry: At the moment, we don't have a building as such. We have been promised land on the main campus at Sunnybrook, and what we're hoping to do at the moment is raise funds to build a hospice and equip it so that we can service the community of the greater Metropolitan Toronto area. We will have a total of 30 beds, 28 for inpatients, two for respite care, and we would also operate a day hospice. That would be reaching into the community to meet the needs of some families that can look after their relatives at night but cannot manage to do it in the daytime because they have to go out and work.

Mrs Fawcett: Thank you very much for coming before us, because this whole issue around palliative care I think is quite a different concept than we are used to. I know my own mother, for instance, went to the hospital in 1973 to literally die of cancer. We were told by the doctor not to even say anything to her about it. I think back on all that horror now, and thank goodness we have moved forward from there.

I'm just wondering. You're right in that we're not sure what the ministry has decided and just what the plans are. I agree with you that they are urgently needed. Has your group, the White Light Hospice Foundation, been contacted or consulted to give some guidance, or do you know of groups that have been, so that at least we're on the right road or right track?

Mrs Anne Norris: I have a bit of a throat, so if you can't understand me I'll let someone take over. We've been consulted over time during the last four and a half years, since our inception, about how this would fit into the continuum of care, how it would fit into the budget and how it would fit into people's life in North America, because for North America this is a new concept.

On all those issues our studies have shown that it would be very well accepted by the public, be very well accepted by physicians, families and nurses etc. Financially, its implications are that once it's up and running, you're essentially running a large house. You're not running anything that needs a lot of sophisticated equipment. On the other hand, we would be able to take things like patients with catheters and IVs and so on and so forth which often preclude these patients going into nursing homes or homes for the aged or chronic care situations where palliative care has not been addressed in its entirety.

Both Shirley and I work at Princess Margaret Hospital, and many dying people cannot get into facilities that will take the IVs or the need for oxygen etc, and nursing homes and homes for the aged in chronic care situations will not take them. So we've seen patients die literally in active treatment beds because there is nowhere for them to go.

All of our studies have shown that we fit in very well in every respect. There is a time now, I think, to also get into the research and knowledge area and make palliative care the speciality that it is becoming elsewhere.

Mrs Fawcett: One other thing: I notice your brief didn't mention it and maybe I missed it, but the whole area of palliative care around AIDS patients, because many of them are not old. They have not come to the end of their life having spent a full life, for instance. I think they have to be treated maybe even a little differently emotionally. Have you been doing some research into that and how all of that, the emotions and so on, must become involved there?

Ms Henry: At the moment, our focus is strictly on cancer patients, because we already have Casey House in Metro Toronto. I understand that they are doing a lot of research for AIDS patients specifically, so that is the reason why we did not get into setting up anything for AIDS patients.

Mrs Fawcett: Thank you. Just one more, training: What sort of training is there available? Do you see a need for a different kind of training, because we're trying to create comfort for these people, not a magic cure?

Ms Henry: Yes. We are trying to create comfort. That takes knowledge, that takes skill and it takes a change in attitude, especially for people in North America. We have travelled extensively in Europe and Anne and I have attended courses at St Christopher's Hospice in London and conferences in Brussels. We've also gone to Paris and to Germany to look at how the hospice movement works over there. You definitely must have knowledge and skill to take care of dying cancer patients. We do not currently have enough knowledge and skills here in Canada, and specifically in Metro Toronto. We do need to have programs set up at local community colleges and also at universities to look into this matter.

Mrs Fawcett: It would be a job that someone could be trained in and have --

Ms Henry: Yes, absolutely.

Mr Cameron Jackson (Burlington South): Very briefly, prior to Christmas, the government made an announcement on palliative care. A certain amount of dollars were allocated. In my briefings with ministry staff, I raised questions with them. But of those dollars allocated, are you familiar with where that money is going and are you being plugged in? As I understand it, the predominance of the dollars is going towards staff development and it's being allocated through hospitals as opposed to the hospice movement, which generally, to put it in the context of these hearings, is deemed to be less of an institutionalized environment, from its corporate board, from its structure, from its ethos, from all those things which make the hospice movement unique and arm's length from a specific hospital. But it seems that the dollars are being allocated for training hospital-based personnel. Are you plugged into that, or did you wish to comment for the record about the fact that you're not?

Ms Henry: We are definitely not plugged into that and I think we should be. From my point of view, if you pardon me saying so, I understand that the government has a mental block when it comes around bricks and mortar. I don't believe that they are looking at other options that could be cost-effective. They just seem to have a mindset that bricks and mortar are going to be expensive, it's going to be another hospital, and "No way do we want that." I think they have to move one step beyond that and even look at what has happened in Europe, that it is possible to have bricks and mortar and at the same time be cost-effective and meet the needs of the community.

Mr Jackson: Finally, the point that I raised was whether, based on the dollars allocated, the government could indicate, through its OHIP records or through its own research, the ratio of dollars allocated for the specific training around cancer or around AIDS as a primary life-taker. They were unable to furnish any numbers in that regard. So hopefully the ministry will be able to come forward to give us some numbers on potential hospice patients in Ontario and tying it somehow to these funding dollars, because somehow it makes more sense that we'd have it targeted to where the need is or where the expertise is available in this province. It sounds like you're ready to begin and you're not even being asked to participate.


Ms Henry: Right, we are ready to begin and I think our statistics are available. For example, in Metro Toronto, at Sunnybrook, I was told by one of their senior executives that at any one point in time 85% of their cancer patients require palliative care, and because of the restrictions -- oxygen need, IV tubings, Foley catheters -- they cannot be placed readily in existing palliative care units. A similar situation exists at Princess Margaret Hospital also.

Ms Carter: I'd like to thank you for your presentation. Personally, I certainly don't have any argument with it. I think there are many very good suggestions. I was a little bit puzzled: Could you tell us more about what you say on page 11, about ethnic groups who don't accept care in their homes for their dying family members? That's certainly a new one to me.

Mrs Norris: This is a quick answer, so I can do that without croaking. Particularly the Chinese population, which is very large in Metro Toronto, does not consider it lucky to have somebody die at home. So even though they have huge numbers of family members who come to active treatment hospitals and stay in the rooms with the patients, sleep on the floor, bring the food, they won't ever take that person home. They do relieve the burden of nursing that person, because they take total care of them, just as they would if they were at home, and they're very dedicated, but they just will not take them home. That is also true not only in downtown Toronto, but a doctor in a Scarborough hospital has exactly the same problem. He can't free up his beds because the Chinese people will not take them home. That's one very definite ethnic group. Perhaps it's such a large group that it's necessary to address it.

Ms Carter: I see. That's interesting. As regards day hospice, would the person have to be ambulatory, or would he be transferred by ambulance, or how would that work?

Mrs Norris: In England, where I studied that particularly, they have volunteer drivers who pick the people up. Sometimes they have a family member who drops them off on the way to work and just picks them up in the evening. If they're able to ambulate a little bit during the day, they can walk in the grounds or talk to the doctors. They can become familiar with the in-patient setting, so that when their disease deems it's necessary to be an in-patient, they're very familiar with the surroundings. It also keeps them out of hospital waiting rooms, because they get their medication adjusted while they're at day hospice.

In some of them they have very good community plans. They have card games and things like that, or they help them cook the meal for the evening. They feel useful going to day hospice. It works very well in conjunction.

The Chair: Thank you. Before thanking you formally, just one question: Do you belong to -- I believe there is an Ontario palliative care association or province-wide hospice association? Am I right on that?

Mrs Norris: Yes.

Ms Henry: It's the Community Hospice Association of Ontario. We are members of that organization, yes.

The Chair: Okay. On behalf of the committee, I want to thank you very much. We started our formal hearings today and this is the first one we've had specifically on the hospice palliative care area and it's been quite helpful. Again, thank you for coming down this evening.

Dr Norris: Thank you for the opportunity to present, and perhaps look forward to the regulations as they come about, perhaps having a second round, if necessary.

The Chair: We'll take that under advisement, as they say.


The Chair: I call upon our second deputation this evening, the representatives from the Ontario Nursing Home Association, if you would be good enough to come forward. Welcome to the committee. Get yourself settled. I might just indicate, we'll try to get some water at the table there to help out.

Mr Bill Dillane: Thank you.

The Chair: While we're a little bit after the scheduled starting time, I can assure you we'll have the full time period for your presentation, and if you'll be good enough just to introduce the members of your delegation for Hansard.

Mr Dillane: My name is Bill Dillane. I'm president and chairman of the board of the Ontario Nursing Home Association. I'm also an owner and operator of nursing homes here in Metro Toronto. I began my career in long-term care as an administrator in April 1972. It just happens to be the same time that the current extended health care program in Ontario was introduced.

With me this evening is Carla Peppler, who is director of resident care for the association and has been with the association over eight years. Last summer Carla served on the program standard focus group with the Ministry of Health and previously, under the Liberal government, the long-term care advisory committee.

Also with me is Brent Binions, who is vice-president and financial liaison on the board of directors and a past president of the board. This past summer Brent served on the Ministry of Health's funding focus group for long-term care reform. He's president of a family-owned company that operates nursing homes and retirement homes here in Ontario.

The Chair: I should add that it did a fine job in my riding.

Mr Dillane: The Ontario Nursing Home Association represents over 290 nursing homes providing care to over 28,000 seniors in Ontario. Membership is made up of both private and non-profit nursing homes and represents the single most significant impact of Bill 101, with over 30,000 residents of a total of 59,000 seniors in long-term care facilities throughout Ontario.

We're confident that the committee will no doubt hear from groups that will try to derail long-term care reform. The ONHA is not one of them. Our concerns pertain to certain portions of the bill and some omissions. We're pleased to have the opportunity to comment and hope our input will be taken seriously, since nursing homes care for over half of the persons in the long-term care system. This and two previous governments have tried to reform long-term care. Any further delay would be intolerable. Long-term care in Ontario has been promised and promised for January 1, 1993.

Many of you may know that in 1987 the ONHA launched a lawsuit against the provincial government on the grounds of discrimination and inequitable treatment of residents in nursing homes as compared to residents in municipal homes for the aged. The court found no discrimination under the Charter of Rights and Freedoms. However, they did find that the system, and I quote Justice Holland, "was illogical and unfair." Justice Holland went on to urge the province to move swiftly to rectify the problem back in 1988. We're pleased that the government has attempted to develop a more consistent set of rules and more equitable treatment for seniors in long-term care facilities in Ontario with Bill 101.

We have a number of concerns which I'm sure you'll have an opportunity to read in detail in our brief. Let me highlight a few.

Moving from the insurance model to a contractual model has a very serious public policy ramification. Bill 101 moves to put long-term care facilities -- nursing homes, charitable homes and municipal homes for the aged -- into a contractual agreement model. This means that potentially no longer will there be a universal, accessible approach to health care in long-term care facilities, that the program will no longer be an insured service under OHIP in Ontario. The bill avoids any government responsibility to fund nursing homes or long-term care facilities generally equally in order to provide the same level of services to everyone across the province. The government could treat many of these facilities differently and has, through this legislation, provided a vehicle for program funds in some facilities while not doing the same in others.

Each year the service agreements must be renewed. The government is under no obligation under this act to fund the level of care required by residents or to continue to fund programs if it chooses to change the agreement. There is no arbitration or appeal mechanism in the service agreement that we're aware of, so homes will simply be subject to the government's whim regarding policy and programming, regardless of its ability to fund these services adequately or to even fund them at all. The government must be held accountable to maintain equitable and consistent services in all long-term care facilities throughout Ontario.

The service agreements have not been made available to long-term care facilities or, to our knowledge, to the committee for review. There's no accountability for the government to provide funds to meet the requirements under the service agreements.


The ONHA is concerned that the legislation focuses on paper processes and not on outcomes of care. Delivering care to residents is far more important than filling out paperwork, and an overemphasis on paperwork obviously reduces the amount of resources available to provide direct resident care.

The legislation should not require facilities to provide all services as defined in the care plan unless the government assumes responsibility for funding these services.

With regard to access to long-term care facilities and the role of placement coordinators, we would recommend that existing resources be used for the placement coordination function, that a new level of bureaucracy not be created for this purpose.

Many placement decisions are made on evenings and weekends. Therefore, it is essential that this service be available to seniors throughout Ontario 24 hours a day, seven days a week. As well, the placement coordinator must be required to take into consideration the applicant's choice with respect to ethnic, linguistic, geographic and religious preferences. Applicants must have an appeal mechanism with respect to placement, not just eligibility. This mechanism must be accessible in a timely and efficient manner.

The government's health review board, according to the OMA, has a two-year backlog, which is totally unacceptable. Bear in mind that the average length of stay in a long-term care facility in Ontario is just slightly longer than two years.

Matching residents' needs to facility services, the other aspect or side of resident placement: Many administrators and directors of nursing go to great lengths to ensure that applicants are placed appropriately within the facility for specific programs or services, such as Alzheimer's units or levels of care that are coordinated within the home down to such details as a most appropriate match for the personality and characteristics of a roommate.

Obviously, facilities must also have an appeal mechanism to question the placement recommendations when a facility believes that it cannot meet the care needs of an applicant properly or safely.

With respect to inspection versus consultation, the Woods Gordon report of 1986, commissioned by the government, examined the effects of an enforcement approach versus a consultative approach to compliance monitoring with the Nursing Homes Act. The report stated that the adversarial climate between the inspection branch and nursing homes was detrimental to solving problems, that the Ministry of Health, with its scarce resources -- and that certainly hasn't expanded in the meantime since 1986 -- was unable to focus its efforts on the issues of greatest importance, the resident health and safety. In fact, the Ministry of Health has an existing compliance management program, developed as a result of that report, that has proven to be very effective in monitoring resident care services and programs.

As well, since the government has just recently passed Bill 74, the Advocacy Act, the ONHA questions whether the government has increased the power of inspectors. Surely the advocates were supposed to help improve communications and help unresolved issues and problems for residents. One would think that because of the new advocacy system there would even be less need and demand for inspectors.

It is recommended that the powers of the inspectors not be increased and that the use of the existing or an expanded compliance management program be continued. The association continues to support accountability for all aspects of care to both the government and the public on the part of all long-term care facilities in Ontario.

In respect to quality assurance, the association would expect that quality management and quality assurance records will be treated the same way as set out in section 27, paragraph 3 of the Advocacy Act. These records are for the facility's use to improve its services and not for use by inspectors to criticize the facility's delivery of care.

Inspectors should not be entitled to have access to the personnel record of staff or to the record or part of a record dealing with the quality review activities, peer review or performance review activities or quality improvement programs in the facility.

In summary, the bill leaves too many issues to regulations. It provides too much power for government and inspectors without requiring a corresponding measure of accountability. The bill holds facilities accountable for providing all resident needs without ensuring that funding will be provided to make this possible.

The process of long-term care reform is a two-step process. We are entering the first step, which is the enabling legislation, a bridge to the new long-term care act in the future. It strikes us that the government is attempting to cover all aspects of long-term care reform in step one. We would respectfully request that most serious consideration be given to simplifying the process at this time so that the bill may move forward.

The bill must go forward. Please end the discrimination and begin to treat equitably the now more than 30,000 residents in nursing homes in Ontario, most of whom are a different 30,000 residents than in 1988, when Justice Holland made his recommendation. The majority of those residents are dead.

The ONHA is prepared to work with government and with others in a partnership to make this process of reform successful. We have already initiated meetings with other associations to coordinate our efforts and to maximize the use of the limited resources that are available. I'm sure all of you share with me the importance of the responsibility that we all have to make long-term care reform work if not for our parents, then at least for ourselves. Thank you very much, Mr Chairman.

The Chair: Thank you very much. I know we'll have a number of questions, so we'll get to that right away. Mrs Sullivan.

Mrs Sullivan: I'm thinking that I'm going to need one of these facilities sooner rather than later.

I'm interested in a couple of things that you've raised in your brief and as a result of some of the interventions of previous presenters today. I think that the ministry has indicated that it will provide us with some additional documentation that you will find of interest. One of them is a clarification of the role of the placement coordinator, and indeed the opportunity for choice of the resident in terms of the selection of a home.

Our view was that the bill certainly provides no indication that there would be choice but that it would be the option of the placement coordinator. The ministry has indicated that was not the policy intent and so we've asked it to, frankly, come forward with some more material and we will want to share that with you.

The other aspect we have not explored as much but which has been raised relates to the appeal process and particularly the right to refuse to enter a home based on any number of reasons, which may be personal. Some of them may be religious. They may be because of a desire to enter a facility that accommodates a cultural emphasis or for other reasons. The apparent response from the Ministry of Health is that those situations will be accommodated. We will wait to see the document to see if we're going to be satisfied on those issues.

The other area that the ministry indicated it would respond to was the entire question of whether the right words were used in terms of quality assurance programs. In my view, it was probably an error in drafting, but I think that the parliamentary assistant to the Ministry of Health did explore that earlier. In fact I thought we had a promise of an amendment but we'll see.


The area that I do want to talk to you about is with respect to funding. First of all, even with the new funding formulas, we will see a continuance of a difference between funding for private sector operated facilities and those in the non-profit sector in areas such as pay equity. I'd like to hear a comment on that and ask if there are other areas where there may indeed be that difference, or if you have heard that that may not be a matter on the table.

The other question relates to the efficacy of the annual review. Is an annual review an appropriate time, given that the care needs of the residents may change more quickly, so that your service requirements as a provider may also change, but you may not have the funding to alter those provisions?

So those are two things. I wanted to concentrate specifically on the funding. We have had, as you know, presentations from both the non-profit and the commercial sectors at this point, and those are areas that I'd really like to hear from this organization about.

Mr Brent Binions: If I could, on the pay equity issue, at the present time the government has a policy that it is prepared to fund pay equity adjustments for not-for-profit facilities but not for the private nursing homes. We do have some not-for-profit nursing homes. In the last year, seven of them received funding under the pay equity system -- not significant funding. The total of the seven was $20,000 for the past year. So they do have an existing policy that says that pay equity will be funded on one side, but not on the other.

That places us clearly at a significant disadvantage. We did make a presentation to the committee sitting on pay equity and set out some of the unbelievable costs and the results of that. If you extrapolated the costs of the pay equity settlement in Toronto to nursing homes, our staffing would go from 2.25 hours of care a day, with the same funding, down to 1.38 hours of care a day, something which we simply couldn't survive on -- our residents couldn't survive on. If they don't fund our costs, we won't have any care. That's very clear and we've made that presentation on the pay equity side.

Another area of inequity within the funding system is that the homes for the aged, at least on the municipal side, will still have access to the municipal tax base. Even if we ended up getting up exactly the same funding to begin with, they could access the tax base, to which we contribute funds, to increase the funding to their homes to provide a higher level of services if they so chose. That's something we simply don't have access to.

Mr Dillane: With regard to the second issue, on the case mix index and assessment of residents across Ontario, I think our greater concern there is actually being able to understand what that case mix index is going to reveal at this time. Government studies before have indicated that the care needs of seniors in homes for the aged and charitable nursing homes are really indistinguishable; they're the same. There are certainly variances between the average amount of care that's required.

I think one of the practical problems right now is being able to complete the study. The assessments were done last September and October and the index hasn't been done across the province or the study completed.

Mrs Sullivan: Could I interrupt here? For those areas where the CMI has been done, have you had access to any of the classifications that have been done in your own?

Mr Dillane: Not at this date. I understand that there have been some operational or functional problems in being able to complete the index averaging for across the province. There are some other options that would allow the government to do it more frequently. Certainly the Ministry of Health has indicated to us that the average waiting from facility to facility will not change that significantly over a 12-month period, but, quite frankly, we haven't had an opportunity to work with the process, to understand whether that is the case or not.

The more important issue, I think, with regard to the case mix index is to understand that it's a self-indexing mechanism, that it doesn't address the specific needs of an individual resident in any facility. It simply weights the average of the facility and the residents' care requirements in that facility against other facilities in Ontario and distributes the funds equitably between facilities.

Ms Carla Peppler: If I can add to that, the classification system proposed is for nursing and personal care only, and it's proposed right now to be an annual assessment. We certainly have problems with the use of the tool itself for a number of reasons, but one of the big issues for us is that resident health care status can change dramatically over a short period of time. So you could have a situation where the classifiers come in and the home gives the impression of being light-care, and something happens and a lot of residents die, unfortunately. New residents come in who are very heavy-care, which would change the look of the home, and there is no appeal mechanism for homes to go back to the ministry and say, "We have a new case mix here and we need more nursing and personal care staff to care for those needs." So that's an issue.

Certainly, in New York state they have twice as many residents as we do in Ontario. They do classifications twice yearly for just this reason, and they have the staff of facilities complete the classification and then the inspectors come in and spot-check to make sure that it's done appropriately and cheating isn't taking place, that kind of thing.

Mrs Sullivan: Do we have more time? I can't believe it.

Mrs Fawcett: Could I just interject here, just on the classification?

The Chair: You just lost your time.

Mrs Fawcett: I'll be really fast. I was told that once the classification had been done, the government was really surprised at the results when they were all tallied, that the number of heavy-care people was just horrendous and naturally was going to cost a lot more. I heard that this was one of the reasons why now there's been sort of a hold on getting those results out, because they don't know what to do now that they've discovered there are more heavy-care people than they had ever anticipated. So I don't know.

Mr Dillane: It begs the obvious question of deciding just what kind of care we want to provide to seniors in Ontario. If there are only so many dollars to go around, no matter how equitable the system, you have to decide what level of service you want. I think obviously in these times of limited provincial resources, having set an expectation in the public's eye that we are going to be providing more services has created an almost impossible situation for the actual providers of care, whether it's the individual staff or the facilities. So somewhere between the Cadillac vision of the future and the Volkswagen services of the 1960s we've got to reconcile this one, and the time is now. We've been promised it for a long time; further delay because it isn't the perfect case mix index and waiting for the perfect case mix index is not the solution.

Mrs Fawcett: I agree.

Mrs Sullivan: Do I still have more time?

The Chair: You can have one more question.

Mrs Sullivan: That's great. I am really concerned that the chronic care role study is not available before we are moving into the first step of long-term care reform with this bill, in that there is some indication that the intention of the government is to phase out chronic care facilities. That would have an enormous impact on the kinds of care requirements that nursing homes and homes for the aged are expected to provide, with no concomitant increase in community-based services for those people who require lighter care. What do you see as the impact and the problem in not having that chronic care role study?

Mr Binions: The impact is a little bit difficult to judge at the present time. There are about 18 chronic care facilities in the province. If they were to phase out the definition of chronic care, my understanding is that they would probably turn those facilities into long-term care facilities; so they wouldn't lose the beds.

They're currently funded, on average, close to $200 a day. That's a great deal of money that's still in the system, unless the government intends to yank that money out of the health care system. That would be a real concern to us. If the money is to stay in the system and be distributed on a more equitable level of care, then maybe the system can work. But our concern is that the intention may well be to move them down to our level and take the money out of the system, when in fact the system is crying out for an injection of funds to be able to increase the quality of care and the level of care that we can provide right across the system. Without having any knowledge of what they're doing with the chronic care system, and not integrating into this, it really leaves a gap.

Mrs Sullivan: Perhaps once again, Mr Chairman, I could ask the parliamentary assistant to the Minister of Health if we could have a policy statement from the minister with respect to intentions about chronic care.

Mr Wessenger: So noted.


Mr Jackson: Just on that point, I found interesting your reference to the chronic care facilities. Do you know of a chronic care facility that's been asked to reclassify as part of a redevelopment plan and hasn't been told it should reduce its total complement of beds? Can you point me to one facility?

Mr Binions: Probably the classic example of a facility that's currently negotiating with the government with respect to readjusting its whole style, rebuilding and adjusting, is the Perley Hospital.

Mr Jackson: But everybody's downsizing. In the process of reclassification, in gaining badly needed redevelopment moneys, there is always the codicil, "But your total bed classification will come down."

Mr Binions: To my knowledge, there are only two chronic cares that embarked on this readjusting themselves, downsizing, changing their funding mechanisms at the present time.

Mr Jackson: Correct, but we still don't know of a facility that's working with the government along the line you just mentioned, where the government hasn't said, "But if you reduce your total number of beds, we'll sit down and talk turkey." That's the point I'm trying to demonstrate.

Mr Binions: Yes, that's correct.

Mr Jackson: No matter what classification of bed you look at in this province, whether it's a chronic care bed, whether it's a nursing home bed, a home-for-the-aged bed, they're all in reduction.

Mr Binions: Yes.

Mr Jackson: So when you talk about the complications in the care level, the growing acuity rate, in fact you're talking about beds being reduced at a time when those who are currently in them are getting sicker and sicker.

Mr Dillane: I think the issue that this really gets to is the number of beds per thousand population of seniors over the age of 65, or a more critical indicator is the number of beds per population of seniors in Ontario over 85. That already has dropped dramatically since 1972, when the government introduced the extended health care program; if I recall from memory, a drop of some 40% in the last 20 years on the number of beds per thousand.

Again, we are entering into long-term care reform. There's no commitment to expand the number of long-term care beds.

Mr Jackson: Precisely.

Mr Dillane: If there is not a commitment, then the accessibility of those beds will continue to drop as addressed by each individual senior in Ontario.

Mr Jackson: It gives concern to the notion that it would be so nice that a senior, five years from now, will have the option of being offered four different bed locations. My experience currently is that we're damn lucky if we've got one we can direct them to.

I'm combining three of your recommendations in the limited time I know the Chair will advise me of in a moment. Several of your recommendations centre on your lack of trust, that you must go on blind faith and proceed with the future vision, as put forward by this government, and at virtually every level, the component where you get to charge for the service is completely in the control of the government to set that rate. We're not talking your rent and your taxes -- and that's siphoned off; that's one of the three boxes you can basically control -- but the care levels are where you're going to get hurt real bad. Forgive the offensive word, but the levels of profit are completely determined by your ability to provide the care levels and not be required to provide care levels beyond your ability to pay. That's the subjective area we're dealing with.

Mr Dillane: Well --

Mr Jackson: Let me finish, because you're going to have a good run at this, I can tell.

The second element is that you don't have any say in who gets sent to you, so in this environment, again, of shrinking numbers of beds and growing acuity rates, you could be the home for the Alzheimer's residents. You could get a whole group of those people or people with dementia, people who are violent. You could get those and have no say in that whatsoever.

Frankly, the track record of placement coordination agencies that are run at the municipal or regional level has been a sort of preference -- or let me put it another way -- a non-preference for the private sector. It's not as though you've been dealt with as a sector, the private sector, very fairly when it comes to allocation of day care spaces or home care services. Currently, it's rife with discrimination at that point of who gets sent to where. I'd like you to respond to those questions a little more directly, even though I believe your brief hits the points very squarely.

Ms Peppler: One of the concerns with not having the results of the chronic care role study is basically exactly what you're saying. We've heard rumours that the study says 80% of residents' care requirements are similar to nursing homes and homes for the aged. There are 20% of residents who do have more technical nursing requirements. They have IVs and respirators, that kind of thing.

One of the reasons why we've insisted on having an appeal mechanism for placement, like you've talked about, is that not every home can care for an IV. A nurse as a nurse is not a nurse. And you can't expect a nurse to be competent in, say, IV therapy when she gets one IV for one week once a year. It's for reasons like that the homes have to be able to say no.

One of the big gaps in the system that our residents really need help with is psychogeriatric care, like you talked about. The mental health system doesn't want it. In fact, they're closing down psychogeriatric beds. The chronic care hospitals in the past haven't wanted it, and we're hoping it's a role they might take on, but it's a real problem for us. We have increasing incidents of aggression and difficult behaviours to manage.

Acute rehab would be another need and respirology and neurology, that kind of thing.

Mr Jackson: Do you have recommendations specifically? You have identified your concerns and you've recommended what we not do or re-evaluate what we're about to do. Do you have any hard language of amendments to table with the committee now or before we complete clause-by-clause?

Mr Dillane: Let me just go back to one other point just for greater clarification.

Mr Jackson: As long as you get back to this one too, that'll be fine.

Mr Dillane: Okay, and I'll follow into that one.

The Chair: Then I'm afraid we're going to have to move on.

Mr Jackson: I was afraid of that too.

Mr Dillane: But we can address this issue, can we?

The Chair: Yes.

Mr Dillane: Thank you.

The issue of envelopes in profit or non-profit is one that is indeed being addressed by the government. In fact the government is making an initiative to remove the profit motive from the care component. So the ability for a facility to stay in business -- in fact this even applies to charitable and non-profit nursing homes in Ontario, one of which has already gone into receivership -- is the amount of funds that are available under the accommodation portion. The government has simply said that for whatever program funding is provided for direct nursing services and special programs, the facility is accountable to spend, and so be it. We have no argument with that. Obviously, there has to be an appropriate amount of funds in the accommodation portion to cover taxes and other administrative and operating expenses.

The concern is not so much with profitability in the care component, because it really is going to be a fairly simple issue. If there aren't enough dollars in the accommodation portion, homes won't be able to provide the service.

The concern I think you meant to speak to and I'd like to speak to is the lack of control. If a facility consistently admits and is referred to admit and is forced to admit heavier and heavier care residents but is given the same amount of money or just an economic adjustment off that same amount of money, year over year, the quality of care, the ability to meet real needs will create a gap that expands and will create a service problem to seniors.

We can all speculate where that will end, but sooner or later we'll have the classic case of someone suing a facility and the Ontario government because they didn't put the program together properly. Indeed, it's possible, if the program isn't structured, the facility would be in non-compliance from day one of its service agreement.

The other issue, the legal language: We would've liked to have had an opportunity to be able to assist in redrafting, but given the limited time between the passage of the bill and the setting of these meetings, we're not prepared at this time to have specific amendments that you could take forward, but we would be pleased to work with government, with this committee and other groups to be able to make this a successful bill.

Quite frankly, I think the focus should be on changing the funding model, on improving the accountability but leaving every aspect of long-term care reform to another step and not trying to cover it all at this time.

Mr White: I was very impressed with your presentation and I want to thank you for coming forth.

There are a few points I want to discuss briefly. The issue, if I'm not too quick in summarizing, is that you're feeling very, very positive that there's a move going forward in terms of reform of the long-term care system. You're seeing, as representatives of nursing homes, the opportunity to be part of an overall system, to be treated on a much more equal footing than has ever been the case, but you still have some concerns.

Mr Dillane: Correct.


Mr White: Some of them I hear as being very similar to the concerns that have been ongoing for a long time, issues about how care is negotiated, how levels of care are negotiated, when you have residents whose needs are far greater than you can accommodate at the moment.

With the mechanisms you've discussed, much of your concern is, how equitable will the negotiations be when we talk about the costs of this service? Are we going to have this dumped on us and are we going to end up at a loss? Is that more or less correct?

Mr Binions: Are we going to end up being able to deliver the level of care that society now expects of us? That's our question. If the funds aren't provided within the envelopes -- within the nursing envelope, within the program envelope -- to provide what society expects us to provide, the level of expectations that have been created by this bill out there, then we will not be able to do the job you expect us to do and it will just be another vicious circle, and we're not doing the proper job again. Our concern is that the funds aren't there to allow us to do what's expected of us.

Mr Dillane: There's a lack of detail at this time to give you any further specific insight into whether we think the system is going to be any more equitable or not. It certainly is moving in that direction in principle, but in terms of the practical implementation, there's not enough information available at this time.

Mr White: Sure, it's just a bill at this point. We don't have regulations. We don't have a system in place. You're feeling positive about it, but it's not resolved. You were also saying you don't have a problem with the delivery of care services at cost, basically.

Mr Dillane: Correct.

Mr White: That's a very important distinction. But you do have some concerns about the way it's negotiated and also with the inspection mechanisms at present.

Mr Dillane: Not at present. Certainly at present we have a compliance management program. What the bill is suggesting is that substantially increased powers be provided to inspectors. I respectfully suggest there's no evidence that there is a requirement for that today in nursing homes or indeed in charitable or homes for the aged, and that with the increased accountability through this new system and the service agreements, there is no need for increased inspectors. Quite frankly, we doubt the government has the resources to pay for more inspectors.

Referring back to the Woods Gordon study, I think there is excellent advice and direction provided there and that's what should be followed.

The Chair: Mr O'Connor, last questions.

Mr O'Connor: You've raised a number of different issues. I'm assuming, and I hope I'm correct, that you've been consulted in the development of the manual that's out there right now, and I hope you continue that.

I know that in what you've said here, you've got a problem with the appeal mechanism for the service agreement. I was wondering if you might like to elaborate on that and perhaps explain and share with the committee, areas you think might be able to enhance that so there is an appeal mechanism. I know we're striving now for a level of accountability that I'm sure is going to enhance, not only the service but the profile of an organization like yours. Perhaps you can share with the committee some thoughts you might have on the appeal mechanism.

Mr Dillane: Two points: One is that we have been a participant, along with the Ontario Association of Non-Profit Homes and Services for Seniors, Concerned Friends and the Ontario Association of Residents Councils, throughout the summer. But much of that work is not reflected in this legislation. Indeed, much of the work focused on a consultative process, on an expanded compliance management program, which is given very little attention in the amendments represented in Bill 101; in fact, a movement to a much more adversarial rather than consultative process.

In terms of an appeal mechanism, it would only make sense in this day and age, with a tendency for many people in society to rely on the courts to resolve issues, that in any service agreement or contractual agreement there is some appeal mechanism or arbitration process that would facilitate an expedient and inexpensive resolution to disagreements or clarifications of the terms of the agreement. At this time, we have seen no draft or documentation of any kind of appeal or arbitration clause.

Mr O'Connor: I realize that but what I'm asking then is, if you had your chance to go up to a blackboard and put down what you think might be an appropriate mechanism, what would you like to write on that blackboard?

Mr Dillane: Binding arbitration from a third-party arbitrator.

Mr O'Connor: One thing you did mention there, in answer to some of what I said, was the investigation, again with a compliance management program. I know that earlier today we heard from a committee, and I believe it was hospital unions that were before us, and of course they reminded us of the Provincial Auditor's report of 1990, saying that right now the ministry isn't doing as much as it should be and is not reviewing, other than a visit for the annual inspection renewal. I know that an organization such as yourselves would like to see that in presenting to your clients and to the broader public. You want to respect the accountability aspect of it. How do you think we could improve that?

Mr Dillane: I think there are a number of options that we have. Certainly, it speaks to the issue of how you judge quality of care. One of the difficulties we have as a society is agreeing on what the ruler is -- quite frankly, where the ruler even is at all in this country -- when it comes to the provision of health care services.

When you focus it down to long-term care services, there's already a tremendous inequity between the annual reviews that take place in nursing homes, and the amount of time and detail that is spent on those, versus a facility covered under the charitable homes act or the municipal homes for the aged act. There needs to be consistency for seniors in Ontario to be able to have a system that is applied equitably across the province for all long-term care facilities, independent of ownership or registration.

The other aspect is that there are some other systems that would complement the process of reviewing the quality of services and programs, but I think the government and health care facilities would be well counselled in working together on improving. The Canadian Council on Health Facilities Accreditation, which accredits hospitals and long-term care facilities across Canada, has developed a specific guideline for long-term care facilities. Over 95% of nursing homes in Ontario are accredited, and that's a voluntary program that nursing homes have participated in. So there are a number of ways that we can move ahead.

I think the other thing the government would be well advised to do, and certainly it would be of benefit to seniors, is if we moved towards developing the ruler so that the ruler isn't just applied to long-term facilities, because a good part of long-term care reform is also additional dollars for community-based programs. Quite frankly, if it's an important aspect of quality of care to measure and it's important in a facility, it's also important in the home of an individual who is receiving home care services.

It has to be a cooperative effort. I think a different approach has to be taken than in the Highway Traffic Act, where someone comes in and decides to police, on a snapshot basis, whether or not the facility is in compliance on a given day.

The Chair: Thank you very much. We could, I think, go on for quite a while yet, but we appreciate both your presentation and also the fulsome answers to a number of questions that all members have had.

Just in closing I note that, as I think you're aware, the committee will be meeting through into March, so if there are subsequently any particular points that you wish to bring to our attention, please do so through the clerk of the committee.

Mr Dillane: Our very sincere thanks for your time.



The Chair: I would now call the representatives of the Ontario Home Health Care Providers' Association and the Nightingale Nursing Registry. If we need more chairs, we'll find them. No, it looks like we're okay on chairs. Welcome to the committee. If you would be good enough to introduce yourselves for Hansard, then please go ahead with your presentation. We have received two documents for each member of the committee.

Ms Judith Bishop: Thank you, Mr Chairman and members of the Legislature, for inviting us here tonight. My name is Judith Bishop. I am the president of the Ontario Home Health Care Providers' Association. I'm also the president of Med+Care and a registered nurse. I would also like to introduce David Gooch, who is the vice-president of our association and the president of Community Homemakers; Sally Mark, the owner of Nightingale Nursing Registry and a member of our Association; and Steve Haas, vice-president of Para-Med Health Services and a director of our association.

I have provided you with a brief. I will not be reading from the brief. More importantly, I will be providing highlights of that brief.

The Ontario Home Health Care Providers' Association represents the commercial home care agencies in Ontario. I'd like to give you a very quick profile of our association and our members in the industry so that you will be familiar with who we are and what exactly we do.

Our members operate 115 offices in the province of Ontario, both in urban and rural locations, and provide currently approximately nine million hours of homemaking services to approximately 100,000 residents of Ontario. Close to one half of the publicly funded homemaking services in the province are being provided by our member organizations. As well, for about one half of our members' businesses, and in some cases higher, publicly funded home care represents all of their business.

Most of our agencies are Canadian-owned companies. We provide the services. I think it's important for you to know that our services are provided, for the most part, at the same cost as not-for-profit organizations, and in some cases lower.

We currently employ over 20,000 nurses, homemakers and health care aides in the province of Ontario, most of whom are women, many of whom are visible minorities and half of whom are working part-time to supplement other incomes or in order to be able to maintain a home life and have flexible hours of employment. Most of our management staff are also women, and many of these women are also owners as well as registered nurses.

We have followed very closely this government's long-term care redirection. The central thrust of this redirection has been very crucial to us, because it is a mandate to maintain people in their own homes for as long as possible through expanded community-based health care rather than have them cared for in a health care facility. We strongly have supported this redirection, and not just for self-interested reasons but because our experience has shown us the efficacy of care at home for as long as possible.

Now that we have the very first piece of legislation dealing with long-term care in front of us, that thrust is confirmed in the draft legislation, Bill 101. Bill 101 would control entry to long-term care facilities by giving authority to placement coordinators who would determine the eligibility and the appropriateness of long-term care. Consumers would be required to prove that they could not get enough care or the right care through their community agencies before being placed in a facility.

Controlling access to facility care is based on the premise that there will be more care in the community, but as yet there are no plans and funding to expand community care to the extent -- and I emphasize "to the extent" -- that would be necessary to make home care available as a true alternative to facility care.

In that light, we think the committee should be made aware that this government wishes to virtually eliminate commercial agencies from the provision of publicly funded home care. We were very surprised to learn that recently, because it's been totally contradictory for this government to declare its aim to expand community-based care, where obviously home care plays a very vital role and a major role, but at the same time to remove almost one half of all the providers of community care. It doesn't make sense.

The government wishes to enforce a not-for-profit preference by directing all new business to not-for-profit providers. No legislation or regulation will be required, not even Bill 101. It can be done by simply not giving us referrals or by directing services to the private sector. This will force many companies into bankruptcy and may ultimately lead to larger and more diversified Canadian companies shifting their investments out of Ontario.

I think it's very important for the legislators to understand that there are many other impacts that would result from closing off opportunities for publicly funded home care being referred to the private sector: dislocation and loss of jobs at a time of high unemployment and for those who can least afford it; loss of choice for consumers; increased cost to the taxpayers, as the deficits of not-for-profit agencies have historically been covered by the provincial government; and the elimination of benchmarks in performance in the home care sector could well result in lower efficiency.

On that last point, it may interest you to know that in the commercial agencies, share of the market has increased in recent years because we have remained very flexible, very responsive and very efficient and have been able to meet the service demands which other agencies or not-for-profits could not at the time: for example, providing 24-hour service seven days a week, providing two-hour shifts when no one else would do that and when it was determined that it was much more cost-effective and more people could be served with less money.

We have lived, over the last 20 years, with previous governments with a preference for not-for-profit. We understood that; we recognized that we were the second call. When the non-profit agencies were unable to deliver the care, we realized that we were called second. We could live with that, but we simply could not live with no calls.

The association believes that the delivery of home care can be improved. Most importantly right now, it seems to be most extremely critical, when all moves -- and the right moves -- are being made to deinstitutionalize, to maintain people in their own homes, that we need more solutions.

We also feel it is extremely important -- and we're very committed to this -- that the quality and standards of home care have to be put in place first. We are working, and have been for the last 18 months, with our non-profit colleagues, and I say that most sincerely, in developing standards for home care in this province. We are doing that also in conjunction with the national association of home care, not in isolation. We feel it is extremely important to be able to participate with non-profit providers and with government in looking at the current project on reimbursement. There are problems with the current reimbursement of home care programs and home care services, and we are involved in participating.

We are also participating with the government project on training for workers, and we encourage and support this project.

With regard to standards, there is a section in Bill 101 that we would like to take an opportunity to point out and comment on. It's an amendment that would allow the Ministry of Community and Social Services to provide payments directly to disabled persons who wish to self-manage their funding and attendant services. We recognize this change is being initiated in assisting adults with disabilities. We support this totally: We believe in this and we applaud that ambition. Nevertheless, we would also like to point out that disabled persons self-managing their own care should receive care that meets provincial standards, and workers who provide that care should be protected against the loss of benefits like workers' compensation and unemployment insurance and such, and be provided ongoing training.

We're not necessarily providing a solution tonight, but are offering a suggestion that the committee recommend a framework for self-managed care that would include safeguards for both clients and workers.

In summary, the OHHCPA believes in a balanced home care system with a mix of both commercial agencies and not-for-profits. We've consulted as many people involved in policy development as possible to try to understand why the government would want to force our members out of publicly funded home care. Clients, particularly seniors, and home care programs have expressed their support to us, and more recently I think are expressing this to the ministry, that they believe in a pluralistic system, they believe in flexibility and, most importantly, they believe in choice.

The minister recently told the media that we're chasing shadows when we talk about this issue, but the Premier has recently corresponded with our employees, telling them, "Nothing we heard during the consultation indicated that we should change this direction," of not-for-profit preference. "This direction" refers to an earlier sentence where he said "a continued preference for not-for-profit" in the delivery of government-funded home care. The Premier went on to say, "We are now looking at how not-for-profit services can be put into place" over time. I interpret that to mean that there will be an elimination of the private sector from publicly funded home care.


We urge the committee to look at Bill 101 in the total context of long-term care. If the thrust towards more community care is a good one -- and we believe it is -- then it's counterproductive and contradictory to remove one of the key players, one of the key solutions providing community care at a time when you're going to need all of us, even more of us than there are now. What is more important today is that we look at maintaining the viability of not-for-profit organizations, improving the standards of care, look at how we can provide better care for fewer dollars, and look not at dislocation of jobs in a recessionary time but at creating more jobs for all Ontarians.

I suggest, having worked as a nurse in community health care for the last 20 years in this province, that if this system is to move forward -- we're to go back to the bureaucratic days when there weren't choices, there wasn't flexibility. I ask the committee to look at what's happening in other provinces. Why are they now looking at having a pluralistic system again, after having tried the other? I thank you for allowing us here tonight, and I hope you have some questions. We would be pleased to answer them.

The Chair: I'm sure there will be questions. We'll begin with Mr Jackson.

Mr Jackson: First of all, let me commend you for your brief. I must say, it is the position of my caucus that were we called upon to draft this legislation, the concerns you raise wouldn't be there. We have unequivocally stated that we don't have the difficulties with working directly with you and sharing with you the outcomes of a healthier, safer Ontario for our seniors. Perhaps as this bill gets implemented, two or three years down the road we may have opportunities, with a change of government, to see the direction change.

But I feel that I must share with you -- I personally know of the services in my community. Para-Med is very active in my community. Unfortunately, it's not active enough, because the local regional government and the placement coordinating services discourage the use of the service. That's unfortunate, because there are some service gaps as a result of adopting that kind of attitude.

Frankly, your concerns are valid. They're not concerns for your bottom line; they're concerns for your staff, who are all pleased that they're gainfully employed and that they're providing a good-quality, around-the-clock service. You have been asked to participate as an association in the discussions. Your brief referenced some of the comments by the Premier that give you cause for alarm. Can you share with the committee your level of participation with the ministry up to this point and what your feelings are about any of those discussions, which were separate from the province-wide consultation process, which was all done at public meetings.

Ms Bishop: The meetings we had after the consultation process -- and I should quickly say that during the consultation process, the issue of the not-for-profit preference was not clarified; it was not put to debate. So we initiated meetings at various levels of the Ministry of Health, starting with the assistant deputy minister, with the deputy minister and with the minister's assistants. During all of these meetings, although everyone was very quick to say that the minister had been very open in her preference for not-for-profit, they also stated very clearly that the minister was very pragmatic. I took that to be very encouraging, and I believe our association did. "Pragmatic" to me means that someone will look at all issues and, before making a decision, regardless or irrespective of ideology, will look at the current situation.

So some may criticize us for having been somewhat complacent in our aggressiveness, I guess, but what happened was that during the latter meetings with the Premier's assistant, a conversation took place when we asked if this preference was going to mean an elimination of our sector from publicly funded: What did that mean? We asked if it was as a result of quality or inefficiencies, and we were told unequivocally no, it really had to do with the fact that this government does not believe that anyone should make a profit on human services. Where does one go from that? If you are striving to deliver quality, if you are efficient and all of those things, it just doesn't matter.

With that, I should also tell you that I have asked for, over the course of the last eight months, meetings with the minister, not necessarily to try and change her mind but more or less to talk about the dialogue that's going on. I think everyone should know this. Currently, right now in the province, we know that the not-for-profit sector has had a very difficult time in viability. A lot of that is for a number of reasons: the current reimbursement system; there has also been a decrease in the volume of business over the last year and we expected that there would be growth. However, all that has led to pressure on the government, and we understand that, to decrease the market share of the private sector to give more to the non-profits. A year ago, that might have been the solution. However, right now there is a resource group looking at reimbursement, and we believe some of that will be corrected.

We wanted to talk to the minister about these types of things and ask for a task force, ask for a delay in any implementation of a policy until other solutions could be found. Those meetings did not come forth. On the contrary, what I received were letters from Bob Rae telling me that he would be encouraging the minister to meet with me, and those meetings did not occur.

We wrote. You should all know, and you probably do know, that Mr Rae has received thousands of letters from employees who are worried about their jobs, and he has responded. I received a copy of a letter from him yesterday, where he has said that they are basically going ahead with the not-for-profit preference in implementation. That was as recent as two days ago.

Mr Jackson: Some of the material I have seen would indicate that you can provide the same level, without saying a better level, for fewer dollars and less overall cost. That's the part that attracts me as well, aside from being a free enterpriser; I don't make apologies for that. By the same token, government should be cost-efficient, which seems to have fallen in disrepute in ideological times.

We are underbedded. Both Ms Sullivan and I come from the same Halton region, and we have fewer beds per capita access for seniors and the chronically ill. So your type of service is critical, because it is a part of a system that assists us with that backlog and with those pressures. The economics of it all point to the fact that you're a system we shouldn't be hurting, that we should in fact be encouraging. But at least the government, from the financial sense of it, should not be trying to punish you; it should just say, "Don't grow, but we'll at least let you stay in the marketplace, because you are providing a quality service at less cost per unit."

I don't know what to say beyond the fact that we can only agree with you. We're very frustrated with the cost efficiency of it and the quality of your service, on behalf of your workers. We, frankly, are not a political party that thinks your workers are second-class citizens.

The Chair: Before moving on to the next questioner, I wanted to doublecheck: Is the other document which you've tabled with the committee for our record?

Ms Bishop: Yes, for your record.

The Chair: Fine, and you'll comment if, as and when.

Ms Bishop: Sure.

The Chair: Fine.

Mr Hope: Dealing with page 5 of your presentation, where you deal with self-managed care, this morning we had a presentation given to us by the Attendant Care Action Coalition. I'm trying to get clarification. You're saying that there ought to be provincial standards on that, dealing with self-managed care? If we're talking about the same issue, dealing with part IV of the Ministry of Community and Social Services Act, according to the coalition, which is talking about what attendant services are all about, it's just normal daily living.

They're coming to us and saying: "Don't change anything. Let it go ahead. I've graduated from a facility. I've moved into independent living and now I want to manage my own life." You're telling us, which they don't want, to be governed by a medical model. They want an independent living.

I'm just wondering: You've come before this committee with this indication and you talked about consultation. Did you consult with the independent living group, which is saying, "Don't make it the medical model; it's part of independent living"?

Ms Bishop: Let me clarify that, Mr Hope. We're not advocating a medical model. I should point out to you that many of our companies provide services now to the disabled, either directly or through existing agencies. I also sit on committees right now with the disabled and also with the task force on this. What we are saying is that we believe there should be standards for training for persons who are delivering types of care. If you believe very strongly that people who are providing care to our parents and our grandparents -- then why not to our brothers and sisters or our friends who are disabled? We're just putting forward our recommendation to you.

The other point we are stating to you is this, and there's a background to this: Many times, we are the agencies that are called after a disabled person's providers or attendants are not able to provide the care. They've left, they've abandoned them and we have gone into situations where they have not been properly cared for. All we are advocating or putting forth to the committee is that you would want to look at standards of education wherever possible. In other words, if there's an opportunity to provide funding for training for attendant care workers, then they should be included as a worker for health and personal services in the province.

Mr Hope: But if you're talking about training dollars -- I listened to the presentation very closely, because in Bill 43, in which we deal with the health professions regulation, and now this piece of legislation which is talking about independent living -- there is really no provincial training program they can put in place that tells how somebody should put his pants on in the morning, to help him go to the washroom. There's no training program for that. According to the independent group, the coalition says that it can train -- it's just like you and me. You get your pants on every morning or your coat on every day, and that's all they're trying to do. They're trying to train people.

Ms Bishop: But Mr Hope, if you are a quadriplegic and you require intermittent catheterization or intertracheal suctioning, I suggest to you that you would want to have someone providing that care who has had some type of instruction or training. I will tell you that my colleagues who are providing attendant care now and there are disabled -- I will say to you that there are groups that believe in a non-medical model and you can hire someone off the Toronto Star to provide that care, but that's not the issue that we're talking about. All we're asking is that you consider that training dollars be made available, that this group is not left without access to funding.

Mrs Sullivan: I appreciate the points you've made in both the briefs. We didn't have a chance to move particularly to the Nightingale Nursing Registry brief, but I think all the members of the committee will have an opportunity to look at it.

I just want to move back, because we had raised with the Minister of Health the question of the role of the private sector in long-term care, and she responded to us yesterday:

"With respect to the issue of the private sector and what is the future of the private sector, I think that I have been very clear in terms of a preference for not-for-profit delivery of services. I think as we look at health care changing and as we see more and more being done outside of the historical program of medicare which is based on principles in the Canada Health Act and which also has public administration as one of those principles, I think there is a consistency to seeing that as a preference for a model of delivery throughout the range of our delivery of services."

Ideologically, I think it's very clear that what you have heard in the past is what we are hearing now. The minister has moved from the Canada Health Act requirements for public administration of a medicare system to public delivery of a health care system, and clearly that is this government's priority. With luck, they won't be around long enough to implement it to the fullest extent. However, in the meantime there can be substantial changes made, and we have certainly seen, in the home care sector and in other sectors, fast change in a short period of time as a result of that ideological approach.

It seems to me that where there is an equivalency in standards, an equivalency in unit costs and a flexibility in delivery, the closest, most available service is the one that should be used. And there should be a balance. Indeed, with close to 50% of home care delivered through the private agencies, it is going to be very difficult to come up with the taxpayer dollars that will ultimately replace the private sector in that field.

I wanted, however, to move to the other point that you made with respect to an issue which I think is emerging -- and I was very pleased to see it in your brief -- and that relates to the unregulated worker who is delivering personal care, sometimes allied in the health care field, in a home care setting or in a community agency setting, no matter what. I think there is merit and I was very pleased to see your organization put that on the table.

The concerns I have had about accreditation or standards or codes of ethics and so on have come from consumers. I think it's useful for an association of providers to also be putting those issues on the table. I beg to differ very much with Mr Hope, who suggests that one doesn't need any training to help a person put on his trousers. If that person happens to be a multiple sclerosis patient, by example, who requires that assistance, that patient can be very badly injured without appropriate training in the appropriate way of moving that person. The training must be provided. If it isn't provided to an adequate standard now, then I think it's very useful that home care providers are bringing the issue to the table, just as consumers are. I was delighted to see that.

I don't have many other questions. I think you've raised the issues of the difficulty of the limitation on facilities and admittance to facilities creating greater pressure in the home care sector. In my community, home care is shrinking. The dollars have shrunk. While we have no facilities to put our people in, we don't have home care either and people are suffering. In my view, a lot of people in my area are at risk. We just don't want to get to that place around the province. I reiterate that every time I get to speak on this issue, because I hope it will get back to the Minister of Health's ears to have a look at Halton. We are in trouble there.

The Chair: The final thoughts.

Ms Bishop: I'd like to point out a couple of points. First of all, with respect to the training, any person who is providing care in the home should have a number of things. Obviously, consumers have to be protected, whether they're having service provision through an agency or whether they're self-managing. That's not only provincial, but we're working with our non-profit colleagues on this as well, and government. I don't think there's a debate from all the providers.

There's also one issue I'd like to point out that I missed in my brief, perhaps emphasizing two things. Number one, we also provide staff relief to nursing homes when their staff are ill. Although that is certainly not a large part of our business, providing staff relief to nursing homes and hospitals is a significant part of our business. That becomes extremely important, very crucial, when workers are ill.

The other point I'd like to raise -- and I had this conversation with the assistant deputy minister last week -- is how it's very likely in the future, as government dollars will not be able to meet the demands of our seniors, of our grandparents, in providing home care, that third-party insurers are going to be asked to provide coverage. Already we are providing care to seniors and to others and having multiple funders. In other words, we're billing the government; we're billing insurance providers.

If we are eliminated from being publicly funded, it's not inconceivable that you would end up having a homemaker in the morning from one agency, where the funding is being provided through insurance, and another one in the afternoon. Ladies and gentlemen, that's called the two-tiered system and we're going to end up with that in Ontario. That's the way it was 20 years ago when I first started teaching home dialysis in this province. That's the way it used to be.

The system has gotten much better and there is certainly an opportunity for us to move ahead and work in partnership. There's room for a pluralistic system in the non-profit and private sectors in this province, living in equality.


The Chair: Thank you very much for coming before the committee, for the two documents you've left with us and for the presentation this evening.

Mr Hope: Mr Chair, in asking legislative research for information, would it be appropriate to do it while you wait for the next deputants to come forward?

The Chair: Sure, that's fine.

Mr Hope: I'm wondering, Alison, what presentations were done on Bill 43 dealing with this issue about attendant care. I'm wondering if through Hansard you could pull up the information around this issue, because I think it's very important. We've dealt with this issue once before and I think it's important that we find out what was said during the Bill 43 process and now into this process. I would appreciate the information on this area.

The Chair: Fine.

Perhaps I could ask Mr Charles King, Muskoka Centre Friends, if he'd be good enough to come forward.

Mrs O'Neill: Mr Chairman, could I ask Alison as well to look at what the criteria are now for the attendant care? I think we should know more than just what's been said in committee. I think I'd like to know what the criteria are and what the limitations in capping and all of those other things are on that service.

Ms Alison Drummond: Okay.

Mrs O'Neill: Thank you.


The Chair: Mr King, you should probably receive an award. I know you were here at the first presenter this morning. I thought at the very least I would note that as you begin at the end of the day. We're aware that you have sat through, I think, most of the testimony today. While you are the last presenter, I can assure you of the committee's undivided attention. Perhaps you would be good enough to introduce yourself and also the gentlemen with you.

Mr Charles King: I want to thank you for this opportunity to express our concerns. I would like to introduce Dr Alan Bruce-Robertson, who you've already heard from with the Huronia representation, and Reg Black, who is the past president of Muskoka Centre Friends up until a few months ago. At that time, his daughter was moved into a group home and I inherited his position.

I only inherited it because I figured, and I think I figured rightly, that I would be president for a very short period of time. Muskoka Centre is now down, I understand, to approximately 35 residents. Our own daughter is going to be placed in a group home shortly, so this may be the last you'll hear from Muskoka Centre.

Indeed, it's been a long day and I can't help but express words of praise to those members who have stuck it out up to this point. I hope you won't be disappointed in what I have to say. Actually, I fully expected I'd be talking to the wall at this hour.

I'm going to express the concerns of those who care about the wellbeing of the developmentally handicapped. It will be a repetition of the talks you have just listened to from Margaret Paproski and Janet Allingham. However, I think my story will be told in a little different way, so I shall commence.

I lived in the town of Whitby at a time when the population numbered 3,000, and the number of residents at Ontario Hospital matched that of the town. In those days, the citizens often quipped that some members of the town council should be replaced by inmates from the insane asylum.

I recall a story that went the rounds which bears repeating. One spring a resident of the hospital was sitting atop a cedar rail fence at a crossroad on the hospital farm property when a local farmer passed by, driving a team of horses pulling a wagon loaded with manure. The inmate called out to the farmer and asked him where he was taking the manure. The farmer replied that he was going to put it on his strawberries. The immediate response of the inmate was: "You must be crazy. We put cream on ours." Stories, like history, have a way of repeating themselves. To me, the inmate's reply makes sense. In my dissertation I will attempt to separate fact from fiction to hopefully discover why the multi-year plan is putting manure on the strawberries instead of cream.

My expertise on the care of the developmentally handicapped goes back 55 years when my parents admitted my mentally retarded sister, Ruth, to the facility in Cobourg. She spent the better part of her life there until she was transferred to D'Arcy Place shortly after it opened.

About 15 years ago, despite my disapproval, she was moved to a group home in Smiths Falls. One and a half months later she was sent back to D'Arcy Place with a report that she was unmanageable. A couple of months later the Ontario government of the time sent me a bill for $44,000. I didn't respond, and before the year ended they wiped out a trust fund in the amount of $34,000 that had been set up for her which was held by the public trustee. I have every reason to believe that the confiscation of her trust fund was deliberately engineered, because several years later I met people whose relatives' trusts were similarly confiscated.

Four years ago, my sister was moved to a well-operated group home in Port Hope. Since then, she has moved to two other group homes, and an application has been made for temporary accommodation in a home for the aged in Cobourg until there is an apartment vacancy. At noon today I called home, and my sister had called, and she is now in an apartment on her own. She is 70 years of age and is on medication.

My wife and I have a Down syndrome child whom we had admitted to the facility in Orillia at the age of three. We were told by Dr Alan Brown at that time that it would be unfair to the other two children to keep her at home. We promptly applied for her admission. When we were told that we would have to wait for seven years, I appealed to a high-ranking government official for assistance, and his influence brought immediate results.

About 20 years ago we went to Orillia to visit her and discovered that she had been moved to Muskoka Centre without anyone notifying us. While in Orillia, Judy was an outgoing, happy child and a chatterbox. It wasn't until two years ago that some members of the staff were able to get her talking again.

Judy is now 43 years old. She suffers from arthritis and finds it painful to walk. Arrangements are under way to have her moved into a group home in Scarborough.

Fifteen years ago my doctor arranged for my admittance into the facility at Lakeshore. He had recognized that following a bout with pneumonia, it had triggered a chemical reaction, and I was labelled a manic-depressive. I have no recollection of being depressed, but I do remember being on an unusual high. While there, a woman doctor from Sri Lanka had me under her care. The normal medication for manic-depressives is lithium. She had had previous experience with situations similar to my own where she had used a herbal drug, resulting in full recovery. I owe my presence here today to this woman. I spent almost two months at Lakeshore, and my medication ceased the day I left. To this day, I am not on any medication. And now you know that I have also been on the inside looking out.


It is an acknowledged fact that group homes were originally established to provide a temporary shelter for people who were judged to have the ability to become independent members of the community. Apparently, all three political parties are committed to a policy, which was established by a Conservative government 12 years ago, to phase out all institutional care of the developmentally handicapped and place them in group homes.

To me, it is inconceivable that any task force could gather up all the information available and, after weighing the pros and cons, come up with a policy to scrap a system of care that was built up over the years to be envied all around the globe -- incidentally, this has been mentioned before, this afternoon -- a system which brought teams of doctors and social workers from faraway places to study the methods of care, and replace it with an untried experiment of placing all patients, including those with multiple disabilities, in a permanent setting in a group home. It boggles the mind to acknowledge that anyone in his right mind can make a decision that there is only one cure for all diseases.

I have documented evidence from sources. In the state of Pennsylvania a five-year attempt to deinstitutionalize and opt for care in group homes has ended in utter havoc. Three quarters of the patients are out in the street. Many of them are into prostitution and drugs. The cries for help from relatives who are caring for developmentally handicapped people at home are being ignored. Institutions are being reinstated, and new ones are being built.

On a recent visit to Israel I had the opportunity to visit a privately endowed facility that accommodated 60 developmentally handicapped people, the majority of them with multiple disabilities. They were housed in several small buildings, and a variety of activities were in process. Jerusalem Elwyn is partially funded by the government of Israel. They also operate several group homes that accommodate up to 20 people in three major cities. Most of the residents are employed in businesses in the area, that is, from the group homes. It is interesting to note that institutional care is not being phased out, and that they are improving and expanding their present facilities.

The multi-year plan certainly has opened up a Pandora's box of problems, many of them unresolved, and I am amazed that some of them were not anticipated. This brings me to the point of asking questions, some of which you have already heard from the lips of other speakers, so I ask the members of the committee:

(1) Is there a trained task force in place that has authorization to monitor the operations of group homes? If there is, how swiftly can they act to rectify a problem after it has been discovered? If there is not a trained task force in place, how soon can one be mobilized?

What I have in mind is what is currently being discussed now in the province of Alberta, where three group homes are being closed. They were intended for the autistic. There was evidence years ago -- not just yesterday, but a long time ago -- that there was sexual harassment and all kinds of other things going on, so they're just beginning to investigate. Ladies and gentlemen, you're dealing with people. You're not dealing with cars.

(2) Do members of the committee realize how traumatic the uprooting can be when a patient is moved from a familiar environment of friends and other attachments to a strange new environment? Some will adjust, but for many, it will result in a setback.

(3) What documentary evidence can the ministry produce to prove their claim that the cost per person for care in a group home is less than the cost per person for care in an institution? Our federation has documentary evidence, and that was brought out today, that this statement is untrue.

(4) We have been repeatedly assured by the minister that all services will be in place before a patient is moved to a group home. The statement should have read, "Every effort will be made to have all services in place before a patient is moved into a group home." There is nothing more certain than death and taxes. There are any number of scenarios that are taking place at this very moment that put the minister's statement in the file of wishful thinking.

(5) The police are only permitted to apprehend someone if they are caught in the act of committing a felony or endangering the life of somebody else or their own life. Are any members of the standing committee aware of what happens to a developmentally handicapped person when they are apprehended by the police?

(6) What arrangements are in place to provide immediate accommodation for residents of a group home in the event of a fire, an unforeseen emergency or a forced closure of the home?

(7) Relatives of the developmentally handicapped are very concerned that because of escalating costs, government cutbacks, fewer and smaller donations from the public and corporations, plus other economic pressures, the standard of care in group homes will diminish. Well-trained, professional social workers cannot be expected to apply for jobs in a group home. These jobs are and will be filled by young, inexperienced people who will be satisfied to receive low rates of pay while gaining the experience. A large turnover of personnel can be expected as these people realize that there's no room for advancement within the framework of group homes. This situation adds to our concern for maintaining the standard of care. Do members of the standing committee have any suggestions to counteract this situation?

(8) The introduction of user fees is being discussed under advisement by all levels of government involved in health care and social services. We look upon the introduction of user fees not only as a way of raising funds outside of the realm of taxation but as a sure way of destroying the principles of universality that are now in place. Operators of group homes who will have to face the economic squeeze may be left with two bad choices: They can cut back on food and services or they can opt for user fees. The wellbeing of patients will suffer under both choices.

We are aware there are group homes that have asked for and are receiving substantial monthly contributions from relatives of residents. It is conceivable that these residents will receive more attention than those who cannot afford to contribute and those who have no relatives. It is also conceivable that some operators of group homes, upon learning that an applicant for admission could not or would not contribute -- that the applicant could be turned down as admission could be denied for some other reason. Should the ministry discover that a group home is receiving funds from other sources, I am sure they would give consideration to cutting back on their grant. Have the members of the standing committee taken a good, long, hard look at this item of concern?

(9) Lastly, according to a recent report released by the ministry, there are 2,500 applicants in the metropolitan area of Toronto alone who are registered for assistance. By this time next year, the number will have increased to 3,500. All of these applicants are residing in their own homes. By what stretch of the imagination will the present multi-year plan be able to accommodate these people in group homes?

My closing remarks focus on my personal assessment of the problems that the standing committee on social development will be faced with in the days ahead.

If the committee is unable to come up with the answers to many of the questions I have asked, then I suggest that they look at the alternatives, which will place a tremendous burden on the taxpayer. Incidentally, I've heard very little about where the funds are coming from or questions about how we handle the financial end. That I fail to understand.

We will be seeing an ever-increasing number of developmentally handicapped people and people who are spaced out walking on our streets and in the plazas unattended.

Just as an aside, I had a few moments at noon and I went, for whatever reason, down to the Eaton Centre. While I was there, I sat on a bench and someone who was quite spaced out and mumbling to himself sat down in behind me within two minutes. Before I left, I was on the phone with my wife and talking to her and a man in a rather decrepit-looking condition -- he wasn't drunk, but he was spaced out too -- came running over to me and told me he loved me. I didn't give him the opportunity, and then he went off and he was hugging some other stranger. So you're going to have a lot more of that.

Many of them will become involved in crime, drugs and prostitution. Many more citizens will be approached for handouts and, out of frustration, the incidence of violent crime will escalate. A common scene will be many more people sleeping in the subways and on park benches. This is not an exaggeration. If you're not ready to accept it, look at what is happening in some of the American cities. It is not a pretty picture, but I hope it will put some urgency on finding satisfactory solutions.


In anticipation of your question, "Anything we recommend will require more money. Where will it come from?" I toss this out as a suggestion, for what it's worth. I offer a simple solution that has been staring us in the face for years. Does anyone here remember the Irish Sweepstakes? Years ago, they were used to fund the hospitals in Ireland. What is wrong with a lottery called the Developmental Handicap? Designed along the lines of Lotto 649, it would generate millions of dollars. Design the lottery to provide a limit of $1 million down to $100 and divide the spoils among more winners than are presently in the Lotto 649.

In addition, each winner should be handed a tax-deductible receipt when he cashes in his winning tickets for an imposed 10% contribution to the developmentally handicapped fund. No one could possibly object to having a slice taken off the top of a bonanza that they didn't expect to receive, especially if it's going to a good cause.

I want to thank you for listening.

The Chair: Thank you very much for your presentation and, in particular, for the questions. We'll begin the questioning with Mr White.

Mr White: Mr King, I want to take issue with one of the things you bring up here, sir.

Mr King: Very good.

Mr White: I live in the town of Whitby and I represent that town. Right here, sir, you're talking about the Ontario Hospital at Whitby.

Mr King: Yes, sir.

Mr White: You're talking about the story about the chap sitting on the cedar rail fence.

Mr King: Yes, sir.

Mr White: I want to tell you for sure that there are no strawberry farms near that hospital.

Mr King: He was going the other way.

Mr White: He must have been.

These issues have been with us for a long time. I remember back 10 years ago, on the grounds of that very hospital there was a place called the Durham Centre -- it looks just like the Muskoka Centre, the same kind of thing -- and they were closing it down; the previous government to the previous government. This is going back a long time. They were closing it down and those very issues that you've brought up were being brought up then.

Mr King: That's right.

Mr White: They are very poignant issues. They are very, very difficult issues, especially for people like yourself when you're so concerned about your daughter and the proper care that's needed to take care of her and worried about, "Can that happen in the community?" when there are those kinds of waiting lists.

I want to commend you for coming forth, sir. I know that your local member has been working very hard on this issue with regard to the Muskoka Centre and the cutting back of beds there. I've certainly heard on many occasions from Dan that he has been working hard on that.

The concern I have a little bit here, you bring this up about the group homes. Have you checked with any of the group homes?

Mr King: Yes, I have.

Mr Waters: What was your impression of them?

Mr King: I'll start off by saying that no business is any better than the management, and you are going to have a wide variety of management. Some will be quite successful. My sister was in a group home and it was one of the finest I've ever seen, simply because they had a dedicated woman there, but I've seen some group homes that should be closed. It's from one extreme to the other. I'm not opposed to group homes.

Mr White: You're checking them for your daughter?

Mr King: I beg your pardon?

Mr White: When you check them out for your daughter, you're going to want to be sure that whatever home your daughter is in is going to be one that you feel comfortable with.

Mr King: Of course.

Mr White: Are you getting any help in doing that, sir?

Mr King: It hasn't taken place yet. An appointment is being made.

Mr White: But that's going to happen? You're going to have some help with that selection.

Mr King: Yes.

Mr White: Thank you very much.

Mr Hope: I was interested in reading your presentation, Mr King. One of the things I do want to touch on is that you indicated there is a community group in the community out there, a community living group. In your eyes, do you see them not performing the appropriate job that's needed?

Mr King: What are you talking about, volunteers?

Mr Hope: The community living groups that are working in our communities providing the deinstitutionalizing of people.

Mr Reg Black: The Association for Community Living.

Mr Hope: Yes, the Association for Community Living.

Mr King: My comment on that is that you're going to have a variation from one community to another. Some communities have services available, some don't; some never will have, they don't have the funding. You can't put everything in one bag and everything is related. There is a relationship. So that's a difficult question for anybody to answer.

Mr Hope: I notice you make a reference to your sister who is 70 years of age now and in an apartment.

Mr King: Yes.

Mr Hope: What services is she receiving? Is there a contract for a service agreement?

Mr King: It's called Access.

Mr Hope: Just help me out a bit; I don't know all the services.

Mr King: That's the name given.

Mr Black: It's sort of a group home association in the Port Hope area.

Mrs O'Neill: Your presentation is certainly different in that it's so very personal. I think it takes courage to relay difficulties that you have encountered and I think in many ways have overcome over a long period of time. I find the questions extremely useful. Do you feel you'd like to comment on any of those questions or do you just want to leave those with us?

Mr King: The purpose was to leave them with the committee. I hope they take time out to give some serious thought and address them and do something about them. This operation has been going on now for 12 years. Surely, somewhere somebody must have a handle on where we are going. Are you going to wait another 12 years? Are we going to be in the same position 12 years from now as we are today?

Mrs O'Neill: I hope not, but as you heard today, and we've brought forward I think several times, this whole area of individuals is not attended to in Bill 101.

Mr King: Yes.

Mrs O'Neill: That again, in my mind, has to create some kind of further anxiety, delay and avoidance of the issue. I feel your comments on group homes are extremely well placed. I think there is an extreme variety of care and levels of care in those homes. I like the questions you talk about that are very practical about group homes, and I think we did express earlier today our regrets that there is so very little tracking. I find that the communities have to absorb the responsibility for the group homes in many cases, and certainly in two instances in my own riding.

I wonder if you would break your rule and say a little bit about the police and developmentally disabled, simply because that's not an area we deal with. We've had an awful lot of discussion about policing this year in the Legislature, but we have not had one intervention in this regard. If you could just break your rule on that one, that will be my only question.

Mr King: I made it my personal business to ask several policemen in different parts of the city, "What do you do in the circumstance where you have to apprehend somebody and you find out that they are mentally disturbed or they're in the classification of the developmentally handicapped?" They said just what I said here. They can't apprehend them unless they've committed a felony or they're harming themselves or they're threatening somebody else's life.

"Where do you take them?" was my next question. "Well, we have two choices. We can take them to a psychiatrist, in which case he can forcibly have them medicated. But he can only keep them for seven days and they're out in the street again, so it's a revolving process. Or we can send them to jail, and jail is no place for these people." Those are the two choices. That's all I know.

Mrs O'Neill: Thank you so much.

Mrs Fawcett: Thank you for appearing. I'm extremely interested, of course, in your story, because I represent Northumberland and am well aware of the facilities there. Certainly you go back the whole gamut and have a lot of knowledge of that whole system. I can't help but think that so often people who make decisions are making them from their own point of view rather than from the point of view of the best interests of the person needing the care and assistance.

You have such a tremendous amount of experience and knowledge. Your accurate assessment of outcomes is very well taken. I hope that we can find some answers to your questions and find the correct answers as we go through and make sure that, as the minister herself said, we do it right. But we are worried, certainly in our party, that it is going to be done right.

I hope that your sister is happy now in Port Hope and that she is getting the kind of care and quality of life she deserves.

If I could just even briefly mention, I guess that you have another interest maybe, in our Chair, in that you may have known his father at one time in your life. You may have gone to school with him.

Mr King: Yes.

Mrs Fawcett: That's a very interesting thing and I'm so happy that you have come.

Mr King: It goes a way back. If I might add, when we first institutionalized our child, I was well aware of Down syndrome. Some neighbours of ours had a child. They had the child at home and some years after they left the town and didn't know we had a Down syndrome child. That child was then about 30 or 40 years old. They showed me a picture that this child had just drawn that would be the kind of picture a three- or four-year-old would have drawn. I felt very sorry for them because they had lived their life in the hope that this child was going to amount to something and at the age of 30 they were boasting about the picture. Those two people died early in life; it just wore them out. So we made up our mind to put our child in a home at that time. But my contact with the system goes way back.

If I just might make one other comment, I also was down in Quebec City to see how the nuns handled the situation at that time. I have a page out of Dickens. Once you allow them to keep your child in the province of Quebec, it's no longer your child; it belongs to the church. I went inside and the first thing I saw were about a dozen five-year-old kids, filthy dirty, mopping up the floors. I didn't waste much time in asking any more. Now things may have changed, but I suggest that if any of you have an opportunity to see what goes on in some of the other cities in the States, you'll come back very proud of the system that did exist here with the institutional care.

The Chair: Thank you very much.

Mrs Fawcett: I think he should be seconded to the ministry to help as an expert in the field.

The Chair: Sorry, did you wish to make just a final comment?

Mr Black: Yes, I'd like to say that about a year ago -- not quite a year ago -- my daughter went out to a group home. It was one of the good placements, I'd say. As past president -- Charles has taken over the reins and I'm not that much connected -- I still do a certain amount of missionary work, you might call it, with the parents and the siblings of the residents. I've watched the downsizing of Muskoka Centre. As such, I am quite concerned about some of the elderly ones. This is a personal thing, because I know the parents made friends with them over the years. This is what Bill 101 was about, so I have a personal interest in this bill, as to what is going to happen to our people. Okay, that's all.

The Chair: Thank you very much. We appreciate your being here through most of the day.

Mr King: Thanks for your offer of a cot, but I just got so interested I didn't have time to use it.

The Chair: Good, okay. Thanks very much. The committee stands adjourned until 10 o'clock tomorrow morning in this room.

The committee adjourned at 2105.