Transcription du comité 1994-sept-15 | Assemblée législative de l'Ontario

Ontario Advisory Council on Multiculturalism and Citizenship; Ontario Advisory Council for Disability Issues; Ontario Advisory Council on Senior Citizens

Mary Szkambara, vice-president, Ontario Advisory Council on Multiculturalism and Citizenship

Dr Shirley Van Hoof, chairman, Ontario Advisory Council for Disability Issues

Bill Hughes, chairman, Ontario Advisory Council on Senior Citizens

ALS Society of Ontario

John Muirhead, past president

College of Nurses of Ontario

Anne Coglan, president

Community Occupational Therapists And Associates

Mary Horan, chair, board of directors

Barbara Quinn, executive director

STANDING COMMITTEE ON SOCIAL DEVELOPMENT

*Chair / Président: Beer, Charles (York-Mackenzie L)

Vice-Chair / Vice-Président: Eddy, Ron (Brant-Haldimand L)

*Carter, Jenny (Peterborough ND)

Cunningham, Dianne (London North/-Nord PC)

Hope, Randy R. (Chatham-Kent ND)

*Martin, Tony (Sault Ste Marie ND)

McGuinty, Dalton (Ottawa South/-Sud L)

*O'Connor, Larry (Durham-York ND)

*O'Neill, Yvonne (Ottawa-Rideau L)

*Owens, Stephen (Scarborough Centre ND)

*Rizzo, Tony (Oakwood ND)

*Wilson, Jim (Simcoe West/-Ouest PC)

*In attendance / présents

Substitutions present / Membres remplaçants présents:

Malkowski, Gary (York East/-Est ND) for Mr Hope

Phillips, Gerry (Scarborough-Agincourt L) for Mr Eddy

Ruprecht, Tony (Parkdale L) for Mr McGuinty

Tilson, David (Dufferin-Peel PC) for Mrs Cunningham

Wessenger, Paul (Simcoe Centre ND) for Mr Martin and Mr O'Connor

Also taking part / Autres participants et participantes:

Ministry of Health:

Wessenger, Paul, parliamentary assistant to the minister

Quirt, Geoff, acting executive director, long-term care division

Czukar, Gail, legal counsel

Clerk / Greffier: Arnott, Doug

Staff / Personnel: Boucher, Joanne, research officer, Legislative Research Service

The committee met at 0907 in room 151.

LONG-TERM CARE ACT, 1994 / LOI DE 1994 SUR LES SOINS DE LONGUE DURÉE

Consideration of Bill 173, An Act respecting LongTerm Care / Projet de loi 173, Loi concernant les soins de longue durée.

The Chair (Mr Charles Beer): Good morning, ladies and gentlemen. The standing committee on social development is now in session. For committee members who have been on the road, it's Thursday and we are back at Queen's Park. We are still examining Bill 173.

We have again a very long day of hearings. If I could at the outset, both for members' remembrance as well as for those who are with us today, I note that because we have wanted to ensure that we heard from as many presenters as possible, we have placed more emphasis on hearing from the presenters, and that means less time for questions. So the rotation will be as we have been doing, with one question per presenter, and we rotate that through the different caucuses. We'd like to have more time for questions, but the tradeoff was trying to make sure that we got people to make their presentations before the committee.

WOODGREEN COMMUNITY CENTRE OF TORONTO

The Chair: I welcome our first presenters this morning, from WoodGreen Community Centre, if they would be good enough to come forward. We want to welcome you all to the committee. Perhaps you would be good enough just to introduce yourselves for the committee members and for Hansard. We have a copy of your presentation. Once you're settled, please go ahead.

Mr Brian Smith: Thank you very much, Mr Chairman, for the opportunity of addressing the committee on this important matter. My name is Brian Smith and I'm the president of WoodGreen Community Centre. I'd like to introduce Amy Go, who's the director of our senior services, and Margaret Bryce, who's a board member and a member of our seniors' advisory committee. I am going to start off with the presentation and Amy Go and Margaret will also present as part of our presentation.

WoodGreen Community Centre supports the principles of long-term care reform and believes the proposed Bill 173 is a concrete step towards implementing these principles. However, we are concerned that without certain amendments, the present legislation may become a barrier towards reaching the goals that are shared by both the government and the community; that is, to develop an MSA system that provides equitable, accessible and high-quality services in a cost-effective and accountable manner.

WoodGreen has been a comprehensive multiservice agency in the Riverdale community of east Toronto since 1937. The organization provides child care, adult protection, mental health, immigrant employment, neighbourhood housing and seniors services to our community of over 80,000 individuals. WoodGreen's seniors unit provides home support programs, homemaking and IHP through Metro home care, supportive housing and three elderly persons' centres. These programs operate effectively in both English and Chinese, since over 20% of our community's first language is Chinese. Other than the nursing and physiotherapy services, WoodGreen provides almost all other services that are included in the MSA basket of services.

We have concerns that the criteria imposed by the planning process of the DHC will restrict not only the flexibility of the local delivery organizations but ultimately the flexibility of service provision to the individuals in our community who for cultural, economic or lifestyle reasons do not fit into a regimented and highly regulated service delivery system. WoodGreen is able to serve them now. Our concern is the ability for these individuals to continue to receive service in the future.

We urge you to ensure that this flexibility is maintained in the future and local planning bodies and ministry policy and operational structures are not able to regulate this flexibility out of existence.

I would like Amy to give you more concrete examples of what I've been mentioning.

Ms Amy Go: I'd like to share our concerns by illustrating an example of Mr and Mrs Wong's experience. They are a senior Chinese couple who live in Riverdale.

Mr Wong was recently admitted into a nursing home. His placement came after years of struggle by the family to keep him at home. A few years ago Mr Wong had two massive strokes which had weakened both sides of his body. As a result, he was incontinent, confused and frail. After discharge from the hospital, he was receiving three hours of daily nursing and homemaking services. His wife, the primary care giver, also suffered from a chronic disease that challenged her ability to continue in the care giver's role.

As Mr Wong's condition deteriorated, the stress on Mrs Wong, physically and emotionally, also escalated. Although Mr and Mrs Wong received a lot of support from their married daughter, unfortunately she was laid off from work and was emotionally and financially devastated. In fact, their daughter had been caught in an abusive relationship in her own home and sought assistance from WoodGreen as well.

As a community centre that has been serving Riverdale for over 57 years, we come across situations like Mr Wong's on a daily basis. Other than providing a wide range of home support services to seniors and people with disabilities, we also work closely with families and other people in our community. The comprehensiveness of our scope enables us to provide support not only to Mr Wong and Mrs Wong, but also to other family members. However, we are concerned that the process the government has set up will fragment, if not eliminate, this comprehensive neighbourhood service. We believe the Wongs' needs, like those of many seniors and people with disabilities, should be addressed in a holistic and comprehensive manner.

Working closely with the family, our bilingual client intervention and assistance counsellor coordinated a wide range of services to address their physical needs. These included nursing services as well as homemaking, home help and meals on wheels provided by WoodGreen. It was also important for the counsellor to ensure that all these services are provided in a culturally appropriate manner. Mr Wong was also referred to our Chinese frail elderly day program, where he could participate in social and remotivational activities.

To alleviate the emotional burden experienced by Mrs Wong, our counsellor spent a lot of time supporting her and her daughter. WoodGreen's immigrant services counsellor was also brought in to help their daughter apply for financial assistance and provide her with the support to confront the abuse. When Mr Wong's condition deteriorated, we coordinated his placement. Presently, we continue to provide home support services to Mrs Wong and counselling support to her and other family members.

Highlighted in the Wongs' experience is the need for government policies and legislation to appreciate the interconnectedness between the physical, emotional, mental and social needs of consumers. The policy framework, including the present proposed legislation, should ensure that WoodGreen and the future MSAs remain community focused, comprehensive, flexible, equitable, accessible and responsive.

Let us share with you the vision of WoodGreen with regard to Bill 173. We would like to see legislation that will empower the MSAs with adequate resources, support and flexibility so that changing community needs can be met without cumbersome bureaucratic approval.

The client intervention and assistance program is essential to this holistic approach and must be specifically identified in the legislation. Other than providing the wide range of health and social services, it is also very important for the MSA to adopt a preventive and wellness-centred approach in its operations. This includes community development strategies that enable the MSAs to work with consumers, care givers and other community members to address collective concerns in constantly working towards the betterment of the wellbeing for all. Anti-racism and anti-discrimination policies should govern the MSAs, together with very clear equity measures in programming, human resources, governance structure and all other aspects.

Counter to this vision are the current provisions in Bill 173 that may stifle community responsiveness and flexibility. Although much of the details are left up to the regulations, the constant use of such language as "uniform rules and procedures" in section 1(e) and "prescribed criteria," "prescribed procedures," and "prescribed rules and standards" in section 20(4) in Bill 173 contradicts the rationale for a community-based rather than institutional-based long-term care system. Instead of ensuring quality and access, we're afraid these rules and criteria will create gaps and further entrench cultural bias and discrimination.

To illustrate this, let us revisit Mr and Mrs Wong's experience. To provide the most effective support to them, WoodGreen's CIA counsellor, who is culturally and linguistically competent, has to take on numerous roles. These include service coordination, advocacy and supportive counselling, as well as instrumental support. Unfortunately, this community-based CIA model has not been recognized in Bill 173 as one of the core functions of MSAs. The current case management discussed within the Ministry of Health is narrowly defined and restricted to service coordination. This approach proposed by the ministry and exemplified by Bill 173 clearly illustrates the prevailing influence of the traditional health care delivery system. Prescribing a case management system that lacks the holistic approach will leave the needs of consumers like Mr and Mrs Wong unmet, and they will be unable to continue to live in their community.

WoodGreen has similar concerns regarding the inherent cultural bias in the proposed system. Although the ministry has consistently highlighted its concerns for cultural and racial minority consumers, we have not seen any real indication that the proposed system will clearly remove the barriers for them, and although the consortium that WoodGreen has been working with in east Toronto has been trying to address these issues in our proposal, we find that community plans are continually frustrated by the district health council process.

Different cultural groups have different understandings of and experiences with health and social services. Working closely with the Chinese-speaking community makes us aware of their approach towards wellness. The traditional belief of health is one that is primarily preventive and based on addressing the root causes versus the symptoms. For this reason, WoodGreen coordinates one of the largest Chinese-speaking elderly persons' centres in Metro, with over 2,000 members. The members actively pursue volunteer, social and recreational activities that enhance their health and emotional and social wellbeing. For the same reason, our CIA and day program coordinators are working with many seniors who may not be considered eligible for MSA services because physically they are not frail enough, but their need for emotional and social support is crucial to maintain their independence.

We do not believe that Bill 173 incorporates such a preventive approach towards health and illness found in the Chinese community but also shared by other communities as well. The legislation has not even mentioned the role of the elderly persons' centre. By prescribing an illness-centred approach in the legislation and regulations, we continue to entrench the cultural bias that is found in our current health care system and perpetuate a medical model.

0920

Ms Margaret Bryce: My name is Margaret Bryce. I'm on the board of directors of WoodGreen Community Centre. My section deals with the bill of rights and about the rigidity in the bill.

Another illustration of the inherent cultural bias in the legislation is the emphasis on individual rights. Now, WoodGreen obviously fully supports the incorporation of the bill of rights into the legislation. In fact, we urge the committee to include in section 3 the right to be free from discrimination on the grounds enumerated under the Human Rights Code.

After saying this, we have to caution the committee that the fundamental emphasis on individual rights that includes an appeal process is not necessarily relevant for all consumers from different cultural, racial and political backgrounds. It is meaningless for a Chinese-speaking senior to receive a piece of paper that states their rights. The power balance between the consumer, particularly those who experience historical exclusion, and the service providers cannot be changed with this paper. Consumers who are not aware and have not experienced any opportunity to exercise these rights to challenge inequities are not going to miraculously change. So there need to be some kind of funds available for the community work and there clearly has to be something in the bill that says these rights are available to the client from the very beginning, not just once they are receiving services. The actual entry point to the system must be covered by the bill of rights.

While we believe the bill of rights should be entrenched in the legislation, it is more important to ensure that the MSAs have the internal mechanisms to address inequities. At the same time, quality, service and system audits should included in the legislation, which allow irregularities and contravention to be identified at a system level as soon as possible, before any one consumer has to pay the heavy price for it. I think that's a really crucial point, that there has to be adequate funding to allow agencies to do this properly.

It is important for the committee to understand the assumptions behind the proposed bill and challenge their validity. We've identified the bias but we also urge you to review the rigidity of the prescribed rules and uniformity.

We fully support guidelines and standards that appreciate a community-based system and incorporate concrete equity strategy. It is, however, contradictory to the principles of the long-term care reform bill if Bill 173 will create gaps and continue the process of exclusiveness. It is essential for the act and the regulations to provide a flexible, accessible and equitable framework so that rigidity and bias can be reduced.

Flexibility will allow MSAs to adopt approaches and develop programs and services that are appropriate to the communities. At the same time, the bill should incorporate wellness and a preventive approach as the purposes of the MSAs. It should also include client intervention assistance as the key function and connect the MSAs with the role of elderly persons' centres.

Even when Bill 173 is amended to reflect all the goals and principles of long-term care reform, the ultimate determining factors for its implementation are adequate resources and community support. I think I should say that again: adequate resources and community support. This is obviously the cornerstone of achieving what we're after here. We believe that true commitment from the Ontario government can be shown when adequate resources are continuously put into the system to support neighbourhood multiservice agencies and long-term care reform.

Mr Jim Wilson (Simcoe West): Thank you for your presentation. I have actually a number of questions that I wrote down as you went through, but I'll cut to the chase because we had a multicultural organization earlier this week, represented by Dr Joseph Wong, indicate to this committee that one of the reasons we have to tear down the current system and replace it with a bureaucratic, rigid and very prescriptive MSA is that the current system is not responding effectively and in a timely manner to ethnic groups and individuals.

I had the opportunity to ask a similar question of Metropolitan Toronto, the organization representing home care, and I want to ask you the same question, because I note you start off by saying you think Bill 173 is a concrete step. But I want to tell you that my interpretation of some of the major flaws that you point out, including the exact opposite to what Joseph Wong told us, was that this bill actually has a cultural bias. We agree with you on that, by the way, and actually are calling for the withdrawal of the bill because it needs major fixing. The government clearly missed the boat on this legislation.

I'd like to give you an opportunity to tell us how you're responding to the cultural needs out there now. Again, I need to know, as part 2 -- you're having discussions I assume with the DHC -- how are you going to fit into the new system, because once this bill leaves Parliament, it'll be DHC and minister only who determine how WoodGreen fits into the new system?

Ms Go: I don't think I would disagree with Dr Joseph Wong. I think we both agree that equity measures and strategies to combat the inherent systemic discrimination in the system have to be fully legislated. That's why I think Dr Joseph Wong and WoodGreen Community Centre have been supporting measures, anti-racism strategies and all that, to ensure that these are entrenched. I think what he would mean and what we are saying is that these should be included. Standards and guidelines of these measures should be included.

However, our concern is that because of the inherent bias right now in the system, we also have to look at, if we use the basic assumptions that we have right now in developing the model, then we are not challenging these basic assumptions. These basic assumptions of a medical model of a not-preventive approach to health care delivery but an exclusive approach to health care delivery should be challenged. If we use those basic assumptions and put them into law to prescribe who would fit into long-term care, who would fit into MSA, to say that you have to be this frail to go to a day program, you have to be this and that to fit into the Meals on Wheels program, all these rigidities will just defeat what we are trying to build up in the long-term care system: an accessible system and an equitable system. I think what we're challenging is that kind of rigidity and the assumptions of the health care model that I don't think Bill 173 has been able to address.

To also secondly respond to the issue around the implementation, as we have mentioned, right now we are part of a consortium in the east end of Toronto proposing a neighbourhood model that is based on a collective approach that was built up by the agencies and consumers and community groups in the east end who have been working in this area for a long, long time and have been supportive of a model that is neighbourhood-based, flexible and all that. However, this proposal has been turned down by district health council, just because we don't fit in the population size, and again this illustrates the rigidity of this whole system. How can you at the same time say that we have to be accessible, community-based, looking at a community development approach, looking at what the consumers are telling us, and then say that we are prescribing this and this and that?

I think this is the core of this, to look at the match between the implementation process and the principles of long-term care and the principles and the goals of this legislation. We are very concerned that the implementation process is going to totally go against what we are trying to build in this legislation.

Mr Jim Wilson: You mentioned the DHC as a barrier to the consortium's proposal. Could you just explain what you just meant by "don't fit into the population size"?

Mr Go: When the DHC long-term care steering committee proposed a report to the ministry, they also prescribed the criteria for the development of MSAs. Those criteria included of course the government structure in terms of like who are representative or represented in your community process. We have no problem with that, to be inclusive and all that. However, among those criteria is also the size of the population of the MSA. It says it has to be between 100,000 and 150,000.

These population sizes have not been based on any cost analysis study that we have been informed of. We've been telling them that you have to tell us why this population size. We have no problem if you can prove that by cost-effectiveness, by accessibility, by getting rid of the bureaucratic system. However, that was not provided, but we have to abide by those rules.

It's very interesting. We are told to go for a community planning process, do it so you share, you'll be inclusive, try to draw on the people who would then collectively develop an accessible system. At the same time, they tell us, "You have to do this." It's like we have to do it towards a predetermined destination. I think it's totally contradictory to a community planning spirit. I think, if governments would want to respond to that, you should examine those criteria. You should examine that to set up planning process criteria is very different from setting out criteria that say MSAs have to be like this and this and that.

The Chair: I regret, I know we could go on with questions, but our day is quite charged. But I do want to thank you all for coming today. As has been noted, some of these same issues have been raised as we move towards the end of our hearings. We appreciate the particular focus you've put on it this morning.

0930

VILLA CHARITIES

The Chair: I call on the representatives from the Villa Charities, if they would be good enough to come forward. Welcome to the committee. We have a copy of your presentation and also of the newsletter which you have provided for us and for which we thank you.

Dr Marisa Zorzitto: Good morning, bon jour and buon giorno. My name is Dr Marisa Zorzitto and I am a geriatrician and the president of Villa Colombo Homes for the Aged board of directors. I am here representing Villa Charities, together with Mr Pal Di Iulio, who is the executive director of the Italian Canadian Benevolent Corp.

Villa Charities is comprised of the home for the aged, the Columbus Centre, Vita Community Living Services and two apartment buildings for seniors and disabled people. Villa Charities operates day programs for seniors, frail elderly and developmentally handicapped people and provides educational, athletic, cultural, recreational and support service programs. We serve thousands of people who are of Italian and other ethnic origins.

We appreciate the opportunity to contribute our views to the members of the standing committee in your difficult task to ensure that the legislation being proposed is the best legislation to serve the people of Ontario, regardless of ethnic origin. We substantially agree with other submissions made to your committee, including those of the Multicultural Alliance for Seniors and Aging, the Human Services Alliance, the Catholic Health Association of Ontario and the Federation of Provincial Non-Profit Organizations Working with Seniors in Ontario. These groups have tremendous experience and knowledge and the trust of the public. Our principal comments on the proposed Bill 173 are as follows.

Firstly, equitable access to culturally sensitive services through designated lead MSAs: During consultations, through written and oral submissions, we and many other groups have emphasized the need for true access to services, in particular case management for thousands of people whose mother tongue is neither French nor English.

Each of you honourable members speaks an official language. Please try to imagine telephoning a number for help when you don't speak English. You can't understand what is being said by the person answering the phone, or, worse, the voice message system says press 4 for this language, 6 for something else and 1 for yet again something else. Of course, you hang up. If you don't find someone to help you access the service, you don't get the service. You give up.

Due to the reality of demographics in our province, and particularly the greater Metropolitan Toronto, it is generally agreed that lead MSAs and satellites or storefronts are required for access to culturally sensitive services.

The proposed legislation states that "reasonable grounds" is a term sufficient to enable the minister to take over a multiservice agency. We submit that "reasonable assurance" for lead MSAs specializing in cultural, spiritual and linguistic needs should be enshrined in the proposed legislation.

Our first recommendation, then, is that the act should include wording assuring reasonable access to culturally, spiritually and linguistically sensitive services through the minister's designation of lead MSAs and require appropriate training of staff to refer and serve consumers needing culturally sensitive services.

The legislation requires that MSA boards reflect the composition of the geographic area they serve. As an area changes, so will the board of governors. When a lead cultural MSA is no longer required in the future, it will become evident in a changed board reflecting the demographics.

Secondly, we would like to talk about the partnerships with volunteer groups and governance. We believe that the majority of volunteer-based groups do not have vested interests; they have investments in their community. In these times of fiscal restraint, we need experience, time and support from volunteer groups that receive the trust of the people and can communicate with their communities.

Subsection 15(2) may be interpreted as a clause which sunsets the ability of the minister to exempt how community services are provided after four years and should be amended.

As recommendation 2, therefore, we would say the act should give assurance that volunteer-based groups are a valued asset to be encouraged, supported and continue their good work as full partners in the MSA system, together with the requisite board membership representing consumers and providers in the respective areas, and in providing services for lead cultural MSAs.

Given the millions of dollars involved in delivery of these important services, full and complete discussion of all aspects must take place prior to enactment.

Our third recommendation is that enactment of this legislation should not take place until either full and complete discussion of all pertinent facts on funding, transition, implementation and impact are thoroughly examined and reasonable consensus achieved from consumers and providers, or the proposed legislation should be purged of all but essential principles with the balance resting in the future regulations to the fact where changes or additions can be made when the system is fully planned and tested.

Our third recommendation refers to the community involvement. The Minister of Health gave authority to district health councils to design MSAs through community consultation. Before many DHCs gave their recommendations, first reading of the act took place. The legislation proposed is for an untried system.

Our additional concerns relate to the extensive rules governing service providers in the proposed legislation. The bill of rights section of the act should equally give reasonable assurance for equitable access to services for consumers. While we are unable at this time to propose a solution, we believe that an alternative must be legislated which permits a consumer to seek recourse for ineligibility or exclusion from a particular service to an MSA group or a local level prior to a more formidable and less accessible appeal board.

In conclusion, then, members of the standing committee, thank you for your time. We urge you not to act in haste and to truly heed the advice which is being given to you by these various groups. The impact of your work affects all consumers: your relative, your friend and your neighbour.

0940

Mr Larry O'Connor (Durham-York): Thank you very much for your presentation. I guess one thing we have heard fairly clearly from people coming and representing different cultural groups and service providers in our community has been that they are far more comfortable with an MSA model than allowing the present quite often directed by health unit model. I think what I get from your brief here is some concern about the DHCs being involved in that.

As you know or may not know, this is the first time the DHCs have actually been enshrined in legislation, because up to now they've been there as a planning body making recommendations to the minister but have never actually been put in legislation. Now, for the first time, it's put in legislation and it's going to be looked at actually as a viable body, a body that actually is going to be enshrined in legislation.

Your concern, what I get from some of what you've presented, is that they may not represent the community in which they are serving. I wondered if you might have any suggestions, in that section of the bill that talks about the district health council, how we might make sure the district health council is as representative as possible of the community that it's going to be involved in the planning for.

Mr Pal Di Iulio: I wish it were easy. I guess it's easier in Wawa, Ontario, where essentially the DHC and the people it purports to serve are similar, homogeneous. In a situation like Toronto, where neighbourhoods change every 15 or 20 years, there's usually a time lag between the established groups and the incoming groups. I don't know what formula to use, other than it is very, very important. If the DHC doesn't have a feeling as to what's coming up, what will happen is that not all the communities that are moving into various neighbourhoods will have the expertise, the talent, the English-language expertise, be economically, socially entrenched to be able to contribute.

So it's a matter of, yes, of course, the community should push ahead and it should propose, should put its best foot forward, but communities aren't blocks of people all working together. There are thousands of people, each with their own interests, and at the same time it is difficult for the established DHC council to replace themselves with people whom they don't know. That is a concern. I don't know an easy right-hand answer to that. But I think now I see that at least we're talking about it or becoming aware of it, whereas prior to these sorts of legislation: "DHC? What is that? Where is it?" It was meeting in camera, deciding the fates, and nobody was involved.

Dr Zorzitto: If I might add just a couple more comments, I would support the position that was taken by the previous group from WoodGreen. They emphasized the need for flexibility of models, population sizes in communities, and I would also emphasize we would recommend that the multicultural groups be taken seriously when they go to the district health council and have fair representation and be listened to in terms of the constituents they in fact represent and have communication with.

Mr O'Connor: Would you prefer the model as described coming from the community and through the district health council process over what we've heard from -- for example, the other day we had a presentation by a public health unit saying, "We're the best people to be delivering this service and our board is elected municipal officials," so they know exactly what's best. They're elected councillors and they know what's best. Do you feel that the process we're trying, to bring it from the community up, as opposed to another level of government or this government being the ones who are saying what's best for your community -- do you feel it's better to come from the community itself?

Dr Zorzitto: There is no question in my mind that the needs have to be defined by the community itself, perhaps through its elected representatives. But the more grass-roots one gets in terms of listening to people's needs and what their sensitivities are, the better the system will work and will truly meet the commitment which it is purporting to make.

Mr O'Connor: We've heard people talk about the home care program here, and in fact I believe the budget for it is about $100 million. It could be called a bureaucracy with $100 million. But the local planning process on long-term care: What involvement have you or your group had in making sure the cultural representation in the community that you represent is being put forward so that the planning takes into consideration your needs?

Mr Di Iulio: I was referring earlier to the sophistication of groups. Our community -- if we can say "our community." The Italian-Canadian community's first attempt to do something of a community social function for seniors started in about 1973-74. At that point in time, as best we could understand it, we came up with an idea of a home for the aged.

For a while we thought that, with one home for the aged for 200 or 300 people, we could somehow alleviate a real problem, a real concern that was coming up. Well, we were fooling ourselves. It was a great first step and it somehow brought some togetherness in the planning of the community, but here we are 20 years later, in 1994, and there are 50,000 to 70,000 people between the ages of 65 and 100 of Italian-Canadian origin. Most of them happen to live in the north or northwest part of North York, although not exclusively, and frankly, this is our second time around.

We, in the last couple of years, through these bills, were trying to get involved, trying to get a handle on it, but it takes time, it takes money. I can't say that we have all the full experts to be able to come to you with all the solutions. All we know is that somehow we want to be able to ensure that these 50,000 to 70,000 people, for the next 20 or 30 years of their lives, get some of the services that for the first 20 or 30 years of their lives -- somehow while they were busy working in the ditches and the factories, they could never afford to go to English class and therefore now they can't access. So they become double losers.

So there's a bit of a morality play here. Some of us younger people feel a real responsibility. We don't know what the answer is, but we want to make sure that somehow we're in there protecting their interests, getting the services they deserve. Their number one fault is that they don't speak English; therefore, they cannot access most of the systems that are out there that may be accessible to people who are here and who did take time out to learn English or who in fact were born here and therefore speak English.

0950

OLDER ADULT CENTRES' ASSOCIATION OF ONTARIO

The Chair: I call on the representatives from the Older Adult Centres' Association of Ontario. Just to reiterate, because of trying to get as many presenters in as possible, we are limiting the questioning each time to one questioner and rotating by caucus.

Ms Anita Machin: Good morning. My name is Anita Machin, and I represent the Older Adult Centres' Association of Ontario as one of the vice-presidents. To my right is Bill Krever, the chairman of our business partnerships committee.

The Older Adult Centres' Association of Ontario has been promoting the work of older adult centres in Ontario since 1973. The association is committed to ensuring that the concept of older adult centres and the unique service delivery model used by centres are vital components of long-term care services for seniors in Ontario.

The membership of the older adult centres' association includes more than 150 older adult centres, representing over 100,000 senior citizens. The association provides services like education -- workshops and conferences -- advocacy, services to our francophone older adult centres, Ontario Seniors' Games, research information, regional activities, older adult centre standards, and certification for older adult centre staff and volunteers.

In Ontario, older adult centres have been in operation for more than 40 years. The very first centre sprang up to meet the needs of low-income older adults.

Following the Elderly Persons Centres Act in 1966, a number of seniors' centres were built with the help of provincial government funding. Municipalities which had been working with senior citizens' clubs and programs built or renovated buildings as seniors' centres and provided the staff. In greater Toronto, centres sprang up as non-profit agencies with independent boards and more focus on social and health services than the municipal centres outside of Toronto.

As seniors' centres matured, they moved from social-recreation to multipurpose centres. The philosophy of the multipurpose older adult centre, which had its roots in the National Institute of Senior Centres in the United States, was one of a holistic approach to service delivery in an atmosphere of wellness with an underlying seniors-helping-seniors methodology.

Older adult centres are not only a service provider within the long-term care system, but they are unique in the way in which they deliver services. As defined by the Canadian Institute of Senior Centres, an older adult centre is a community focal point on aging where older persons come together for services and activities that enhance their dignity, support their independence and encourage their involvement in and with the community.

Older adult centres provide an important component of the delivery of long-term care services that goes far beyond the provision of basic services. Older adult centres are visible and accessible facilities in the community that serve a full spectrum of older adults, from those individuals who are extremely healthy to individuals who need vital services to remain living independently in the community. All of these services emanate from a wellness perspective and have the ability to encourage and enable older adults to remain living independently in the community.

Older adult centres are very representative of the communities they serve. One of the founding principles of older adult centres is the involvement of consumers in the operation of a centre, ranging from involvement in governance and participation in program planning to active involvement as volunteers.

A 1991 study of Canadian older adult centres indicates that the problems most frequently seen in members of a centre are, in order of frequency identified: loneliness, mobility/transportation, widowhood, health impairments, low income, isolation, depression, sensory loss, problems with using time and nutritional deficiencies.

The same study indicated that the services most often provided in seniors' centres are services which respond to those needs. We provide fitness, educational, recreational, arts and crafts and social programs, health promotion, health services, specialized services like legal clinics, pre-retirement programs, home support services, Alzheimer's community services, day programs, information and referral, and case management, which are just a few.

The Parks and Recreation Federation of Ontario has put together a list of social benefits that are derived from people who are able to access such benefits:

-- Leisure provides leadership opportunities that build strong communities.

-- Community recreation reduces alienation, loneliness and anti-social behaviours.

-- Community recreation promotes ethnic and cultural harmony.

-- Recreating together builds strong families, the foundation of a stronger society.

-- Leisure provides opportunities for community involvement and shared management and ownership of resources.

-- Integrated and accessible leisure services are critical to the quality of life of people with a disability and disadvantaged individuals.

-- Leisure opportunities, facilities and the quality of the local environment are the foundations of community pride.

Mr Bill Krever: I would just briefly like to highlight the views of the older adult centres' association, including our general support for Bill 173, as well as two areas of concern that we have with respect to the bill. In making these comments, we are hoping to offer some viable recommendations that we feel we would like to see incorporated into Bill 173 that ultimately would improve the impact of the bill.

First, the older adult centres' association is fully committed to the principles and goals of long-term care reform, and in fact many of these principles are the concepts that are the underlying principles of older adult centres and they're concepts that we've been working with for many years.

Specifically, older adult centres are committed to providing single-entry-point access to services, providing a continuum of services, streamlining administrative functions, providing a high-quality service, promoting racial equity and cultural sensitivity. We are very familiar with the intent of the reform and we share the belief that this reform will benefit consumers of the long-term care system in Ontario.

There are, however, two areas of Bill 173 that we would like to discuss today and, in the process, offer some alternative approaches that we believe would improve the impact of Bill 173. First, we would like to highlight our views on social and recreational services as they relate to Bill 173 and multiservice agencies. Second, we would like to comment on the purchase-of-service limitations as outlined in Bill 173.

In terms of social and recreational services, let me first stress that the Older Adult Centres' Association of Ontario is very pleased to see that these services are included as mandatory community support services under Bill 173. We've been fighting many years for recognition of social and recreational services within the long-term care system and we're pleased to see that this is recognized. The recognition of social and recreational services is an important component of the health and wellbeing of individuals within the long-term care system and is consistent with the purpose and mandate of older adult centres in Ontario.

However, Bill 173 fails to provide a definition of what is meant by social or recreational services. It is our belief that unlike other services listed within Bill 173, social or recreational services are very difficult to define and very different in nature. Services such as meal services, transportation services and care giver support services are very generic in nature and generally have universal definitions.

On the other hand, social or recreational services are not defined or directly linked to independent living. Participation in social or recreational services is an essential component of the wellbeing of any individual and are a function of personal choice and overall lifestyle. Participation in these services promotes independent living and community involvement, and they can also be viewed as preventive in nature.

The older adult centres' association believes that the provision of social or recreational services should not be defined from a service perspective within Bill 173 but rather as a concept for personal choice and wellbeing. The motivation of individuals to participate in social and recreational services should be the driving force behind the delivery of such services, rather than the services themselves.

The older adult centres' association believes that older adult centres have an important and unique role to play in the development of multiservice agencies. Further to this, it is our belief that older adult centres need to be recognized within the structure of multiservice agencies, based both on the services we provide and, more importantly, the way that we provide services.

The province of Ontario has been supporting centres since 1966 through the Elderly Persons Centres Act. This act provides up to $30,000 per centre on a 50% funding basis. Funding is largely used for what we would call infrastructure purposes, and the actual funding for the services we deliver comes from other funding sources or from fund-raising.

With this existing resource available to the community and already being funded by the province, it is our belief that older adult centres, or elderly persons' centres as defined by the act, should be designated in Bill 173 as the primary provider of community, social or recreational services for all individuals within the long-term care system.

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So to this end, we have two recommendations which are enclosed in our brief. First of all, we've included a definition of "social or recreational services" which we think would be important to be included in Bill 173, and our second recommendation is that each multiservice agency in Ontario should be linked with an older adult centre or a number of older adult centres for the provision of social or recreational services. Also, in communities where there is no older adult centre currently existing, the Elderly Persons Centres Act should be used to develop new centres to serve those communities.

The second area that I'll touch on very briefly is the purchase-of-service limitation for multiservice agencies. Bill 173 limits MSAs from purchasing more than 20% of their services from other service providers, and I'm sure you've heard many different presentations on this topic. Our views on this come from two perspectives.

First of all from a general perspective, the restriction severely limits the ability of the MSA to purchase services from existing service providers. As we know, there are hundreds of service providers in the province of Ontario that are already offering these services, and this limitation would restrict their participation. The older adult centres' association believes that long-term care reform and Bill 173 should build upon the strengths of the existing service delivery system and should not restrict this participation of existing agencies based merely on a budget ratio.

Further to this, our association is not clear on why 20% is used as a ratio and what the justification is for this ratio. We do understand that in the initial documentation it was 10% and now has been increased to 20%. We would see, if there has to be a ratio, a more acceptable level a little higher, or some justification for the level.

Second, specifically relating to social or recreational services, the older adult centres' association believes that these services should be exempt from purchase-of-service restrictions. The delivery of social or recreational services cannot be accomplished, in most cases, directly through a multiservice agency. They must rely on other service providers. The provision of social and recreational opportunities for consumers in the long-term care system involves providing access to an extensive range of services through a facility-based concept. Most of these services will not be within the context of MSAs and would require a duplication of services that already exist and are already funded by the province of Ontario.

So to this end, we have two recommendations. The first is that the purchase-of-service limitation of 20% for mandatory services be reviewed and revised to allow greater involvement from other service providers. It's further recommended that if it is necessary to have a purchase-of-service limitation, these limitations should be developed on a service category basis rather than across the board for all services. There may be some areas of service that better lend themselves to purchase of service than others, so we see it as perhaps being different for different categories.

Second of all, it's recommended that the social or recreational services within Bill 173 be exempt from any purchase-of-service limitations.

I'll turn it back to Anita for some concluding remarks.

Ms Machin: The Older Adult Centres' Association of Ontario is very supportive of the overall principles of long-term care reform and the major components of Bill 173. The association looks forward to being part of this new service delivery system and we welcome the opportunity to continue to work closely with the province of Ontario and all service providers within the long-term care system at both the local and provincial levels. Older adult centres will continue to work closely with local MSA planning groups, and we will continue to deliver high-quality services to consumers throughout the province.

The Older Adult Centres' Association of Ontario is hopeful that centres will be able to have an important role within the new long-term care system, and we hope that older adult centres will continue to be recognized as the primary provider of social and recreational services. We envision that a partnership between new multiservice agencies and older adult centres will provide a solid base of social and recreation opportunities for all consumers within the long-term care system.

Mrs Yvonne O'Neill (Ottawa-Rideau): Thank you very much for coming. You are presenting on behalf of the Ontario association, as I understand it, but you both are working in Metro.

I would like to say that there haven't been many presentations about well seniors. There certainly are concerns about a lot of the things that are going to happen to those who are very frail and elderly and their care givers, but your service has been somewhat absent in presentation and I'm glad you've put it on the table.

What I think you do is keep people out of care for a lot longer. I think that in itself has to be considered. You didn't mention that too much, but I think it's a very important point of your service.

You're not the only group that has come before us wanting more refined definitions. I think yours, however, is one of the most pressing for definition because, without definition, I think it will tend to be -- what should I say? -- very foggy, mushy in service and in actual presentation as part of mandatory services. It likely will be at the bottom of many people's lists in some communities, and that certainly isn't where the consumer will be best served.

The ratio question has come before us at every centre we've been and many times in every centre. I don't think the government has any real reason for the 20-80, they have not been able to give one. It's the same as the other ratios that are found within the bill. We don't have a reason. I think you put that question again and I hope the government will take your comments in their seriousness; also the fact that it should be over the broad perspective and not specific regarding the allocation of the 20%.

I would like to ask you, because the government tends to continue to hold up Metro as being the only DHC that has really submitted plans, where you've been in that whole mix -- I presume you have been part of the planning and at least presented to the DHC -- where you see yourself at the present time -- we all can only deal with the present because we don't know how and when this bill is going to be implemented and, as you know, there are transition stages -- where you see yourselves now relating to any one of those 15 or 20 projected MSAs and where you've been in the planning of that particular strategy.

Ms Machin: The involvement has been entirely left up to the individual centres because, as an association based in Metro, we have very little control or input in the DHCs in the other communities. Some of the centres have been very actively involved; the association has since the inception of long-term care with our previous government.

Agencies are involved where they have the ability to be. If they are a large agency that has strong staff who are able to interact well with other strong agencies, it has worked well for them. But many of the centres are not operated by staff, or many of them are very small and just involved in the recreational wellness aspect and have not necessarily been closed out but have not known or understood how they can access the long-term care system.

Mrs O'Neill: Do you think you've made your point that MSAs should be directly connected to elder centres?

Ms Machin: With our members?

Mrs O'Neill: On the Metro scene at the present time.

Mr Krever: To add to what Anita said, I think there is a problem, especially outside of Metro. In Metro, older adult centres are involved in the planning. For example, in the agency that I represent, the Don Mills Foundation, the older adult centre is just part of our operation, so our board and our organization are taking a lead role in developing a planning consortium. In fact, that application is being delivered today to the district health council.

Within our work and because we're a large organization, we can bring with us the older adult centres, but in a number of areas outside of Metro, especially where centres are much smaller, there's no consistency as to how centres are recognized and there's no mandate for planning consortiums to include older adult centres as part of the services. I think one of the things we've been looking for is some overall direction in terms of older adult centres being recognized as a core service. Once a service is recognized as a core service, then planning consortiums know that those services are essential to planning an MSA. If you're a link service or outside of that core basket of services, it's unclear in different areas. So we've been looking for, I guess, some overall policy direction as to exactly where we do fit. Many of our member agencies have been active in the process.

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The one thing that concerns us is it's very inconsistent throughout the province, and what may come out with multiservice agencies, in some areas we may be included, in some areas we won't be, and that's merely because of the recognition or lack of recognition that we have, especially starting out in this process.

Mrs O'Neill: So you think the definition would certainly give a profile to your particular organization if the definition was clearer within the act?

Mr Krever: It certainly would. One of the things we see with social and recreational services, as we stated in our brief, it's more a concept than a service. It's not an individual service, such as Meals on Wheels and so on where you can see the tangible output. Recreation service, providing access to services, you need to provide a whole range of activities and services for people.

It really needs to be a facility-based program with a full range of opportunities and in order to do that you really need to be operating an older adult centre or have that infrastructure in place. By capturing some of that within a definition, then it would at least ensure that the concept of what centres are doing and what recreation really means to the older adult is captured.

The other thing we stress is that leisure opportunities in older adult centres aren't only for those people who are active and very well. Many of the consumers that use our services also are active users of Meals on Wheels, home support, even of home care type services. Recreation services don't stop just because you become frail. They're throughout the whole system and they need to be integrated to the different abilities of the consumers within the system for all levels, not just the well elderly.

Mrs O'Neill: I thank you for your very focused presentation. I hope you will have success with your other centres in getting them as active as you seem to be in North York.

Mr Krever: Thank you.

The Chair: I'm going to just ask the parliamentary assistant to comment on the link between the elderly person centre and the MSA process as it now stands. Parliamentary assistant.

Mr Paul Wessenger (Simcoe Centre): Yes, thank you very much for your presentation. Certainly we all recognize the very important role that you play in health promotion and disease prevention. I thought it might be useful for the committee to have Mr Quirt explain how the elderly person centres will relate to the whole question of the long-term care funding situation and whether they will be funded separately and to what extent there will be a financial relationship between the centres and the MSA.

Mr Geoff Quirt: The elderly person centres will be funded from the long-term care program funding envelope but, clearly, elderly person centres can retain their independence and be funded separately if the local planning process recommends that to the minister. I think it's important, as you pointed out, that elderly person centres be at the table and fully involved in planning for the social and recreational needs of elderly people, and I think your point is well taken that their social and recreational needs don't disappear when they gain new needs for other types of support services.

ONTARIO HOME CARE PROGRAMS ASSOCIATION

The Chair: I call on the representatives from the Ontario Home Care Programs Association. Good morning and welcome to the committee.

Ms Ruth Stewart: My name is Ruth Stewart. I'm the president of the Ontario Home Care Programs Association.

Ms Vida Mazza: I'm Vida Mazza, the executive director of the Ontario Home Care Programs Association.

Ms Stewart: The Ontario Home Care Programs Association, OHCPA, appreciates this opportunity to present its response to Bill 173 to the standing committee. Given the time allotted, I would like to briefly describe our association and then we will highlight some of what we feel are the central issues related to the legislation which we believe must be addressed if the government's strategy to reform the long-term care system is to succeed. Our written submission will more fully address all of our concerns and recommendations for your consideration.

The Ontario Home Care Programs Association represents all of Ontario's 38 home care programs. It has over 4,500 employees. These include case managers, therapists, homemakers and nurses. The Ontario home care program was established under the Health Insurance Act and therefore is an insured benefit to all Ontario citizens. Its goal is to provide the coordinated delivery of multidisciplinary health care and support services to individuals and their families in their homes, in schools and other community settings.

In 1993-94, the Ontario home care programs served over 3,000 Ontario citizens, caring for people of all ages with acute, long-term and palliative illnesses and physical disabilities. Today, the Ontario home care programs' budgets provide approximately 90% of the total provincial expenditures for community-based health and personal care services.

The key purpose of the association is to work to ensure that Ontario citizens receive quality assessment and effective coordination and delivery of those services. To that end, for the past decade the association has been advocating to the government for changes to the legislated mandate and policies that govern the Ontario home care program and has identified gaps and needs for the implementation and expansion of programs such as the integrated homemaker program, the assistive devices program and respite services.

Like others, we have worked in close collaboration with the government, hospitals, long-term care institutions and our community service providers, both at the provincial and local levels, to effectively plan and implement meaningful system change.

In general, while the association has several critical concerns concerning the bill as it stands, we are pleased to endorse four key aspects of the act.

First, the association endorses the principles and goals described in the purposes of the Long-Term Care Act, as we are strongly committed to a client-centred system based on values of equity, accessibility, responsiveness, consistency, efficiency and accountability. We believe that community planning, knowledgeable and sensitive to its local requirements, needs, resources and cultural and linguistic diversities, are key elements in the development of a user-friendly system.

Secondly, we applaud the principles in the bill of rights and an appeal measure for persons receiving community services. In a client-centred system, it is essential that individuals be empowered with information about their rights, the opportunity to participate in and challenge the plans and decisions about their care. We are, however, deeply concerned about the prescriptiveness of the mechanisms and protocols outlined in the legislation.

Thirdly, in part VI, concerning the multiservice agency, the association supports the integration of health and social services in the model of an MSA, whereby one-stop access, information and referral and service delivery are made available to the community. The need for flexibility and respect for local determination of the MSA model are paramount for the appropriate and successful implementation of a multiservice agency.

Lastly, under part VII, the rules governing approved agencies, the association is highly supportive of the principle of equity in a consistent, standardized assessment process with uniform eligibility criteria to ensure a person's requirements are evaluated and to reduce unnecessary duplication of assessments and services.

Ms Mazza: Just a small correction: Ruth had mentioned that we served 3,000 --

Ms Stewart: Did I say that?

Ms Mazza: -- indeed, it was 300,000 Ontario citizens. The association's members have carefully reviewed the proposed legislation and have raised a number of serious issues. Our concerns relate to the deinsuring of home care program services, the need for flexibility for the local determination of multiservice agency models, the recognition of case management as a mandatory service, the overly prescriptive nature of the legislation, the acute short-term care needs of persons receiving community services, and the human resource implications for community-based volunteers and workers.

With the amendments to the proposed legislation, the professional services, that is, nursing, physiotherapy, occupational therapy, speech-language pathology, dietician, case management and social work, and the support services of homemaking, transportation, medications, lab work, equipment and supplies, will no longer be an insured benefit under the Health Insurance Act.

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There is a significant difference between an insured service and a mandatory one. The bill introduces this subtle but notable move away from a provincial commitment by eliminating the safeguard of the OHIP listing of home care program services -- see attachment I, regulation 452, Health Insurance Act.

At the same time, the government is promising more flexibility and an increased mix of community service to the public, yet the legislation gives no guarantee of adequate funding for services to meet consumer needs. With the introduction of envelope funding, decisions will be made at the local level about how these moneys will be distributed.

When the public believes it can access a comprehensive list of community services as it needs them, we may create situations where people are left at risk in their homes with limited or inappropriate services unable to ensure their safety. In these times of scarce resources and a demand for accountability, OHCPA, the association, urges the government to review its list of mandatory services and asks whether we will be able to provide the funds to support all these services in all communities.

OHCPA recommends that a smaller core of mandatory services essential to maintain independence be established. Each community should be allowed to decide within its funding limitations which additional services are essential to meet the needs of its local community.

In the partnerships document titled, Guidelines for the Establishment of Multi-Service Agencies, released in September 1993, the government reported that the "community planning and design of each MSA will be led by the local district health council through its long-term care planning committee. This will be an evolutionary process, requiring community planning and consensus building among existing local service agencies and consumers. We have no doubt this process of local empowerment will create MSA designs that best suit the needs of each community."

The document called for a fully developed and integrated MSA established through the amalgamation of provider agencies that currently offer a broad range of long-term care services.

In recent months, the Minister of Health recognized the significant challenge faced by community agencies in developing a plan for full amalgamation and integration of services. In fact, this requirement has been seen as a major barrier to any action towards service improvement and integration in most communities across the province. As a result, the minister has accepted the need for flexibility and the scope of service and organizational arrangements and will provide funding to support collaborative planning initiatives among local agencies as a developmental step towards MSA implementation. We had initially understood this flexibility to mean provincial acceptance of alternatives to amalgamation if a community planning process supported this.

With the release of the proposed legislation, we now understand that, in fact, this flexibility is for a limited time period -- a maximum of four years.

The association's members strongly believe that it is possible to achieve the public's desire for the integration of the service delivery level and simplified access to needed services, which the government is committed to, through other forms of models as well as the amalgamation model.

In addition, OHCPA is deeply concerned about the untested assumption that with the amalgamation of service provider agencies in Ontario, cost savings will be achieved. On the contrary, there is substantial evidence mounting that the administrative costs, including those resulting from the human resource implications of the transfer of workforces, may indeed further erode the resources available for direct service to the client.

OHCPA recommends that the legislation be amended to also allow alternative forms of MSA structures which meet the principles outlined in the purposes of the act and are a result of the community planning process.

On the issue of governance, the majority of OHCPA's members support the consideration of all potential not-for-profit candidates, including municipalities and boards of health, if they are prepared to meet the requirements set out in the selection criteria established under the government's guidelines.

In part VII, section 20, the proposed functions of MSAs are outlined in Bill 173. These are the current functions of home care program case managers today. In all four of the government's partnership documents, references to the critical role of case management and its activities and services are clearly noted and laid out, yet there is no mention of case management in the act.

OHCPA is deeply concerned and must strongly criticize the absence of the role of case management.

With over 1,700 experienced and highly skilled home care case managers and home care programs today and countless others in community support agencies, the government cannot afford to neglect acknowledging the essential service they provide to the consumers of the long-term care system. Integrating all services through an MSA will promote easier access and provide one point of entry, but it will not eliminate the complexity surrounding the array of services and what they offer.

We all want a model that consistently delivers the right service at the right time, in the right place and for the right price. We must recognize how complex that is. We need to be driven by the outcome of empowerment rather than the outcome of compliance or cost-effectiveness to arrive at a client-driven model. We need a fundamental shift in all our paradigms. We need a new language, we need to ask different questions and our models of client care need to enable participants to make choices that lead to self-actualization. This won't necessarily happen by developing standards and converting to a consolidated On Lok type case management model. It will happen by developing relationships that are based on trust, mutual respect, humility and profound knowledge.

The most important part of the process of case management is the engagement, where they build trust, clarify roles and negotiate expectations with the client against the backdrop of a holistic understanding of community services. Unless that step is taken, they cannot proceed to understand what the client truly needs. An intake worker or service coordinator doesn't cut it. It matters most that this be done; it is negotiable whether it is through a broker or consolidated model, because the degree of comprehensiveness can be altered in all models.

OHCPA strongly recommends that case management be added to part II, section 7 of Bill 173 and that MSAs include case management services as a mandatory service available to consumers as needed.

As mentioned earlier, OHCPA gives its strong support to the key principles and values for a client-centred long-term care system and applauds the government's establishment of standards such as a person's bill of rights along with his or her right to an appeal process.

We lend our voice of experience to others who have advised the government not to regiment or prescribe procedures in the legislation such as the appeals or consent section by outlining time frames and protocols.

The association's overarching concern for the implementation of MSAs is that they will be wrapped in bureaucratic processes and paper pushing mandated by legislative directives and regulations. We are further concerned that funds will be diverted from direct provision of services to the additional resources required for the implementation of legislative protocols such as human resources and its management, information systems, training and education and the development of standards.

Throughout the lengthy process leading up to Bill 173, there has been little acknowledgement of the needs of persons with acute short-term illnesses receiving community services. With the downsizing of the hospital sector and tightening of budgets, the development of innovative practices in the community setting has been essential to the health system's efficiency and effectiveness.

Practices such as the home-based traction program, home chemotherapy programs and community ethics committees can be found listed in attachment II of our brief. It contains a catalogue listing over 200 innovative practices and services created by home care programs through partnerships.

Currently over 60% of admissions to home care's regular programs -- that's excluding the school and integrated homemaking programs -- are to the acute home care program.

OHCPA strongly recommends that the current services offered to persons in the acute home care programs be continued in the MSA. Furthermore, OHCPA urges that the government truly act on its expressed commitment to reallocate funding from the institutional sector to the community sector if it does not wish to provide community care for the acutely ill at the expense of the consumers of the long-term care system.

Around the issue of the human resource implications: Firstly, we urge the legislation to protect the valued role of the volunteer in both service delivery and resource generation.

Next, we join our community partners in voicing our grave concern for those whose jobs are at risk through the proposed forced amalgamation of MSAs. We ask that the legislation ensure that the rights of all community employees, both union and non-union, both management and front-line workers, are respected and that equal opportunities are available in work reallocation.

The association, along with its other long-term care community health and support service partners, has requested from the ministry protection for non-union staff similar to the protection afforded those under successor rights in the Labour Relations Act for unionized staff. OHCPA recommends that employee transfers to new agencies should be seamless, with no break in employment or client services.

In summary, the association is committed to achieving a system where consumers will have options, choices and the ability to control their own destiny, and that will cost less than the "do unto" approach. Thank you. We'll be glad to answer any questions we can at this time.

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The Chair: Thank you very much, and I just note for the record that you have left with us as well a fuller brief and that we appreciate that.

Mr David Tilson (Dufferin-Peel): The committee appreciates the positions that you've put forward in your various papers. I have two questions for you. One has to do specifically with the effect, in your opinion, of this legislation on the quality of health care in the province, and secondly, the effect on jobs of the people who are providing the service.

The first question: I'll read a paragraph of your remarks. It came from page 3, which had to do with the deinsuring of home care program services.

"With the amendments to the proposed legislation, the professional services (nursing, physiotherapy, occupational therapy, speech-language pathology, dietitian, case management and social work) and the support services (homemaking, transportation, medication, lab work, equipment and supplies) will no longer be an insured benefit under the Health Insurance Act."

That, to me, is a serious statement as far as the providing of the quality of service of health care in this province. I'd like you to elaborate a little bit more on that paragraph before I get into the second question.

Ms Stewart: As we see it, because the legislation does not refer specifically to the services being insured, we have some concerns that they will be looking for a less costly worker to provide services, and in fact that is being pursued right now through various committees in government. There is an assumption that the professional is not always necessary to go into the home, and while we agree with that, we feel that the very important roles that these workers do provide to the system must be both protected and respected, and where it's appropriate to use somebody who is less qualified and possibly less skilled to provide a certain service to somebody who has a long-term, standing disease or disability, that in fact should be done.

We're also concerned that as we move into this transition of the system, everybody who is now currently providing service has to be both continuing in a role as provider of the service, ensuring coordination, and at the same time working to evolve the system, and we have real concerns that there may be some disruption to what is being provided to clients. Certainly the home care programs are very committed to ensure that there is a seamless transfer of any responsibilities that might occur. So I guess it's really that as we see certain things not being described in legislation -- the commitment of the programs has always been to have a quality product going to the client and we fear that there might be some compromise of this happening in the system.

Mr Tilson: Would that lead to an unequal form of health service -- in other words, if you can afford it, you pay for it, and if you can't afford it, you do without -- which isn't what we have now?

Ms Stewart: I think there is always the danger of that happening, and people are now purchasing services because there are many people who prefer not to come through a publicly insured system. I feel that the consumer who feels that they cannot get the service they want -- and the legislation does refer specifically to the preference of the individual being paramount. I'm not sure how that can be provided for, frankly, under this current legislation.

Mr Tilson: The second question I have: The government, in fact the province, for the last number of years has been aiming at expanding home care services and hence your existence. So on one hand it's expanding home care services -- it appears to be; at least that seems to have been the policy over the years -- and yet, with this legislation, it's been projected by several groups that at least one half of the providers of community-based services -- in other words, the private sector care services -- will be eliminated.

I therefore get to the question as to the suggestion of jobs. On the one hand we commented on the quality of care; on the other hand, how is that going to affect your organization or the people who are associated with your association as far as jobs are concerned?

Ms Mazza: The proposed model suggests that the workers within the service provider agencies will be moved to an MSA, and so there's certainly every indication that those workers would have an opportunity to have a job.

Mr Tilson: But on the other hand, the government's cutting back.

Interjection.

Mr Tilson: Just settle down, Mr O'Connor.

The Chair: Order, please.

Ms Mazza: The concern about jobs for us in particular, home care programs, and I know for our service provider partners, is around the issue of the union-non-union approach that the government has described in some of its partnership documents. It raised concern about perhaps an uneven approach to how they would treat unionized workers and non-union workers. We don't have safeguards for the non-union sector in our area, and so that's a major concern that we've been addressing with the ministry to date and we'll hope there'll be some resolution about it.

Around loss of jobs, if that's your specific question --

Mr Tilson: Yes.

Ms Mazza: -- I'm not sure what that final formula will look like, the final outcome of all of that will look like, because there is a sense that we will need at least the number of workers we have now, but who does that work will be what's in question.

Mr Tilson: Parliamentary assistant, are you able to provide some security to the non-union sector?

Mr Wessenger: I think it's fair to say that there's no intention to give any legal preference with respect to the question of employment. I think the reference in the papers that were set out merely was to the fact that those people who have collective agreements have rights that exist under the Ontario Labour Relations Act, and that is just a statement of fact, not a statement of preference. It's just the reality that their rights exist under the Labour Relations Act for people who are part of a collective agreement, and there's no intention to give a preference on the government's part.

Mr Tilson: Mr Wessenger, my question was, can you provide --

The Chair: It's your final question.

Mr Tilson: One final question. That wasn't my question. My question was, can you provide security to these people who don't wish to become part of the unionized sector?

Interjection.

The Chair: Order, please.

Mr Tilson: Mr O'Connor, will you settle down?

Mr Wessenger: I think it has to be remembered that we have a Labour Relations Act in this province, and the provisions of that prevail. However, the suggestion of a seamless transfer of employment is certainly what would be the intention. There is a human relations plan that's supposed to be developed by each MSA. It's a requirement that that plan treat all employees fairly. The minister has said she will not approve a plan unless there's a provision that treats all employees fairly.

The Chair: In calling our next witness, from the Freeport Hospital, we need to fix up some audio-visual supports here, so we'll have a short, two-minute recess while we get that organized.

The committee recessed from 1040 to 1043.

FREEPORT HOSPITAL

The Chair: I want to welcome to the committee Patricia Henderson, who's the executive director of the Freeport Hospital. Ms Henderson, I think we've got our technological devices set up here, so please go ahead. We have a copy of your submission.

Ms Pat Henderson: In introducing myself, my name is Pat Henderson; I am the executive director of Freeport Hospital in Kitchener, Ontario. Freeport Hospital is a chronic and rehabilitation facility. But as I address you this morning, I am wearing many hats. I've been involved locally and provincially for 10 long years in making long-term care reform happen in this province. I'm also a daughter, a daughter-in-law, a niece and a friend of consumers of long-term care in the province of Ontario. And I am an aging citizen of this province who does not want to reform any system and have it increase the burden on my children and my grandchildren as taxpayers in this province.

Before commenting on Bill 173, I have a short story that I wish to relate to you. I think it's very important that when you're dealing with legislation that affects of lives of citizens, we bring the citizen right into this room.

Emily is an 87-year-old woman. She lived independently in her own apartment. She had high blood pressure and mild emphysema, but rarely saw her attending physician. She stopped taking her blood pressure medication because she felt just fine. Her closest relative, a granddaughter, maintained weekly phone contact with her and her great-grandson visited her periodically.

One day Emily's apartment manager discovered her on the floor in her apartment. She was rushed to the local emergency room where they diagnosed a stroke. Since Emily herself was unresponsive, no information about medical history, family contacts or even her physician was immediately available. Once the apartment manager tracked down the granddaughter, past medical history was retrieved.

Emily was admitted to a medical floor where she stabilized and became more responsive. A full medical workup was completed in a few days.

She was placed on a diet, and physical and occupational therapy began on the fourth day after admission. This is an unexplained deviation because therapy is normally started on the second day after admission. You can probably rest assured she had her stroke on a Friday. By the sixth day of Emily's stay she developed pneumonia. Information obtained after the onset of the pneumonia indicated it was due to aspiration of her food. It was discovered that a swallowing evaluation had not been conducted as part of the stroke workup. She was placed on antibiotics for the pneumonia. A feeding tube was introduced on the ninth day.

By the 13th day, Emily was doing better, so she was transferred to the rehabilitation unit. The extenuating circumstances related to Emily's care increased the typical seven-day stay of a stroke patient on a medical floor to 13 days. Emily progressed well on the rehabilitation unit. She was performing simple activities of daily living and able to walk with moderate assistance and a cane.

After two weeks, Emily spiked a temperature and had to be readmitted to the medical floor from the rehabilitation unit. The fever was attributed to a urinary tract infection due to an indwelling catheter that was not removed in a timely manner. Emily was given antibiotics for the infection, but physical and occupational therapy were not reordered until the fifth day. She was too weak to tolerate their program, and so instead of returning her to the unit to continue the average four-week stay, they recommended nursing home placement.

The hospital social worker-discharge planner met with Emily's granddaughter to discuss and assist with placement. The granddaughter expressed surprise at the recommendation for nursing home placement and commented about how unprepared she was to make such a decision. Emily's granddaughter spent two days looking at nursing homes and decided to take Emily home with her. It was later learned that this decision was based largely on the fact that Emily's funds were tied up in bonds and debentures that the granddaughter did not know how to access.

Prior to Emily's discharge, the granddaughter received one day of limited instructions about managing tube feedings and general care for her grandmother. The social worker-discharge planner arranged for home care to provide a visiting nurse, therapy and supplies. Emily left the hospital on the ninth day after her second admission to the medical floor. The usual length of stay for a urinary tract infection is five to seven days.

The visiting nurse received little information about Emily's medical history or her functional status prior to discharge. Since the granddaughter did not have substantial information, much time during the initial registered nurse's visit was spent tracking down information from multiple sources and completing her assessment forms. The visiting nurse discovered that Emily's granddaughter was away from the home much of time and Emily's great-grandson spent much of his time with her.

Emily's family, with the help of the visiting nurse and the therapist, managed the first week. During that time Emily spent most of her time in bed because the granddaughter could not handle walking or transferring her out of bed. The social worker had earlier suggested adult day health services and an outpatient rehabilitation program as an option, but the family was too overwhelmed to follow up on the suggestion. No one contacted the community services to ask them to follow up with the family.

During her second week at her granddaughter's home, Emily became increasingly lethargic, developed an elevated temperature and complained of leg pain. The visiting nurse and doctor tried to evaluate the problem and suggest a treatment plan over the phone because it was just too hard to get Emily to the doctor's office.

At the end of the second week following discharge, Emily was readmitted to the hospital with severe dehydration, gastrointestinal bleeding and a blood clot in her leg. At the time of readmission, she was unconscious, unstable, and her prognosis was grim. The emergency room had no current data about Emily's medical status and no further information about advanced directives, so they consulted the granddaughter when Emily arrived. The granddaughter was overwhelmed by the whole discussion and agreed to a "do not resuscitate" order, but requested that everything else be done for Emily. Emily was admitted to the medical floor and stabilized.

The staff of the unit learned that the severe dehydration was associated with inadequate flushing of the feeding tube. Emily was receiving a new type of tube feeding formula which required more flushing, and these instructions were not provided to the family. The blood clot was associated with the lack of mobility and the dehydration. The clot could not be easily treated with blood thinners because of her bleeding, and she also was too debilitated at this time for a procedure to place a filter near the clot to prevent breakaway and further complications.

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Emily regained consciousness and stabilized again. The staff on the medical floor believed her potential too limited to warrant physical and occupational therapy. They did not have ready access to information about Emily's functional level prior to this admission and also did not know that up until three months ago she was living independently. They saw a woman who required total care and recommended nursing home placement to the granddaughter. This time she agreed.

Emily was admitted to the nursing home 10 days later. Limited medical records followed her to the facility, so once again an assessment was conducted at the time of admission. On the fourth day after admission to the nursing home, Emily became short of breath and eventually non-responsive. Since the nursing home had no information about code status and treatment wishes, Emily was sent to the emergency room. She had developed a pulmonary embolism, probably a breakoff from the clots in her leg. She was admitted to the medical floor for the fourth time and was treated aggressively. Despite this treatment, she died at the hospital 16 days after her final admission.

Mr Chairman and members of the committee, I ask you, do you feel that Bill 173 as it sits before you today would have changed the fate of Emily?

Long-term care needs reform, there is no doubt, because it is a bureaucratic mess of pounds of paper between agencies, doctors' offices and hospitals, and even if the summary of what is on paper in any agency is shared, it is not shared in a timely manner. Creating paperwork was our solution to our problems in the 1970s and 1980s. If something wasn't working, we just created another system with all its papers and forms to make it work.

I feel strongly that Bill 173 has lost the overriding principles of long-term care reform; namely, coordinated and collaborative services providing a continuum of care in any community and equitable and easy access to services for the elderly and the disabled. Creating another bureaucracy with its pounds of paper and its methods of collecting the same information that already exists all over the community is not going to fulfil these principles. It is not reform, this is not customer-focused, and it will not help Emily. Please recommend that a rigid, cookie-cutter design of multiservice agencies must be eliminated from the legislation. Communities must be allowed to build their own collaboration and cooperation.

Options, as many as creative, innovative communities can design, must be acceptable. For some, a federation of agencies linked by a community information highway with a joint board of directors might be just the answer. In another small community -- many communities that I know -- the hospital may already be functioning as the MSA. In other communities, the design outlined in the legislation might be just the answer. Please do not allow the prescriptive legislation of management methodologies and practices. And for goodness' sake, no one can legislate quality. Quality is a culture in an organization or in a community, and it's built on a value system. This must be allowed to be as unique as our communities are.

I, as a possible future consumer, ask you not to allow this legislation to turn me into a commodity in which I appear on a purchase order to be serviced and then I turn around and I appear on an invoice so that someone will pay for the services I received. This will constitute another paper bureaucracy, very expensive. I buy and sell within my own organization and I know what it costs to cut a purchase order and then cut an invoice. This will constitute a paper bureaucracy which will promote more delays. "Am I receiving what I need when I need it?" is the question we must be asking.

Emily needed an efficient, effective exchange of information between all the providers in the community, from the pharmacist who knew she had not renewed her prescription, to the family physician, to the emergency department, to the various programs in the community in and between the hospitals, to home care, to the family and to the nursing home.

I also have one final plea: that this committee as they make recommendations on this legislation not allow something as important as the proposed major change to the Ministry of Health Act giving the district health council conflicting powers of planning and advising, and now of managing. This requires extensive public consultation on its own. There is no way an act as important as this should have significant amendments buried in Bill 173, a long-term care act.

We are going to have so many people legislated with a responsibility of planning and managing our providers that we are going to constantly be spinning in a circle with district health councils, long-term care offices. Often we have municipal governments owning and operating many agencies and we have standalone agencies with volunteer boards of directors covered by corporate laws and orders of council. Further legislation mandating another body to micromanage the system is not going to enhance the original objects of long-term care reform. Coordination throughout the community will mean equitable and easy access for the consumer.

In coming down to Toronto on the busy 401 this morning, I thought, "I do not have the right to criticize this legislation without telling you what I would propose." You legislate where I can smoke. You tell me I can't drive without carrying a driver's licence. I would like you to consider empowering the citizens of Ontario to take responsibility for their own health and requiring me and every senior to carry current necessary information on their medical history on their person. This won't cost anything. It will just be, "Pass a law."

Many communities have systems whereby the elderly must have the information in their refrigerator so that the ambulance driver can get the relevant information. I carry with me always instructions in my wallet that I don't want a trauma unit to put me back together again if I'm in a serious car accident. I'm afraid that nobody will look in my wallet until long after they've tried to put me together again, but relevant information is right up front.

The Chair: Thank you very much, and in particular for the story of Emily, which I think provides a clear case and one which we can follow through.

Ms Jenny Carter (Peterborough): Thank you for a very moving presentation. I think you have proved quite conclusively that the present system isn't working. I think we all agree on that, but you have challenged us by saying, "Would Bill 173 have saved Emily?" You characterize what we're doing in the bill as increasing bureaucracy, more pounds of paper, depersonalization and so on.

I just want to put it to you that I don't think that is what we're doing, that in Bill 173 we're not setting up a bureaucracy. We are in fact empowering local communities to administer their own health care with community input, because the agency will be run by community boards which are elected from the members of the organization, and the provisions that have been made as to the constitution of that board are that at least one third, and hopefully more, will actually be consumers, people who have used long-term care or are using it or whatever, and also there will be representation for providers.

The logic of bringing together existing agencies into one organization is the very point that you're pursuing: that they're not integrated enough, that nobody knows what anybody else is doing, and that communications are inadequate. I think we're looking at a much simplified system whereby there will be one assessment of a person so that everything will be looked at together, and then the relevant services will be provided, with that central focus of pooled information as to what is happening.

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I'd also like to bring your attention to an article in the Star today where a senior citizens' organization, Senior Citizens' Consumer Alliance for Long-Term Care Reform, sponsored a study which was carried out by Price Waterhouse and they concluded that what we're doing here is actually going to save a large amount of money -- the figure of $90 million is mentioned -- because administration will be reduced, the system will be simplified and more money will go into actual what you might call front-line care rather than into the bureaucratic intricacies that you fear we might be multiplying.

This group says that "seniors are worried that the NDP will lose its nerve to act or leave the new law too vague.... `If something doesn't happen soon, our whole system is going to collapse.'" This is Jane Leitch talking.

"Various seniors' groups have been calling for reform for more than a decade, complaining that the current system is difficult to access, uncoordinated and often insensitive to their needs.

"The one-stop shopping model `will significantly improve a consumer's ability to access the right service, at the right time, in the right place -- at an affordable cost to taxpayers,' the alliance says in a report accompanying the Price Waterhouse study."

So in view of the things I've said, obviously you're right that information is crucial. I think your suggestion for carrying information is very simple and very sensible. I think we do need to make sure that organizations are very well set up to use modern forms of communication. But I'm just wondering what else you would suggest we should do, how we should organize differently to what we're suggesting in order to make sure that Emily would have had a better outcome.

Ms Henderson: I don't take argument with anything you've said. I've worked with the coalition on all its papers and everything. It is the 20% of the elderly and the disabled, you and I, who will not interface the system until there's a crisis: Those are the people I'm really concerned about. I cannot figure out anywhere in Emily's story -- and you have to know, with the passion I speak with, that Emily is very near and dear to me, and Emily happens daily in every community in Ontario.

Where would the MSA have come in? Where would the assessment have been done in Emily's story? The MSA has negated the fact that 20% of our people interface the system -- at least 20%, and I think it's more -- in the family physician's offices and in the emergency department of a hospital. Those are key pieces of information.

In the long-term care reform, it will be very good for the elderly who will pick up the phone and want a service, but the majority of elderly never cry for help until there's a crisis. The MSA will not help them, and we will still be playing with lives with lack of information.

Ms Carter: But at least there will be simplified access, one phone call for long-term care services and, if necessary, one phone call for an advocate who would come to a person in some kind of crisis because they'd been neglected or abused. I'm not sure how we can simplify it further than that, especially since another person could make that call for the person in need.

The Chair: Would you have a final comment?

Ms Henderson: I guess the only other thing I wanted to say, with due respect to the member, is that I happen to co-chair the coordinating committee for the Minister of Health for the implementation of the chronic care task force. I have the job of trying to facilitate coordination from all the pieces that are going to come together in a community, doing it provincially, on behalf of the Minister of Health. I can tell you, there are pounds and pounds and pounds of paper being created.

Ms Carter: I hope we both agree we want to reduce that as much as possible.

HALDIMAND-NORFOLK TRANSITIONAL STEERING COMMITTEE

The Chair: I call on the representatives from the Haldimand-Norfolk Transitional Steering Committee. Committee members, their presentation is in the material that was handed out this morning.

We want to welcome all of you to the committee this morning, and if you would be good enough just to introduce yourselves, then we'll go forward with your presentation.

Mr Ron Armstrong: Ron Armstrong, consumer.

Ms Margaret Toni: Margaret Toni, executive director of CHARTS.

Ms Mary Anne Baker: I'm Mary Anne Baker and I'm director of the home care program.

Mr Armstrong: The Haldimand-Norfolk Transitional Steering Committee is pleased to be given the opportunity to address this panel. This committee is comprised of 18 members representing regional consumers, health care employees and employers from the for-profit and not-for-profit sector, the district health council and the long-term care area office.

In the beginning, a questionnaire focusing on key aspects of the bill was distributed to each member of the committee. The responses were collated and a consensus was achieved in the final draft. In order to be clearly and briefly stated, we have purposely chosen to present our comments in point form. They concern specific aspects of the bill that we believe are problematic, and we have noted recommendations for your consideration in most cases.

Firstly, regarding the purpose of the act, we endorse in principle the government's fundamental goals and objectives to achieve community service reform, notably in the area of one-stop access; improved community-based service system; consumer-focused system; improved and consistent accountability; and local community-controlled planning through district health councils.

Here we recommend incremental improvements within the system to achieve the goals and objectives of the reform without radical re-engineering of the system.

Another issue is that we are concerned that if appropriate funding is not provided to the MSA, the clients will have to resort to other sources of care -- for example, private care -- or the clients may receive no care at all.

Another issue would be that the bill emphasizes the community care requirements for the elderly and the disabled. The acute care and school-aged target groups are not identified within the bill.

We would recommend that the bill include reference to the acute group -- acute home care program -- and the paediatric treatment group -- school health support services program. For example, the fiscal year 1994-95 year-to-date statistics indicate that there's a 17% increase in the acute home care program. Moreover, the case load acuity levels have increased.

Ms Toni: Another issue is regarding case management. Case management is not denoted within the professional services clause, subsection 2(7). Case management is a professional service that encompasses the following key components: holistic assessment; service planning and coordination; resource management; alternate planning; and reassessment and discharge.

We would recommend that case management be explicitly recognized as a professional service in subsection 2(7).

Subsection 2(7) in the act does not limit the provision of professional services to regulated professions. We assume the government is recommending this in an effort to minimize health care costs. We too support cost-efficiency. However, we are concerned the act may be endorsing a system that lacks professional accountability and unnecessarily exposes the client to risk. For example, a visiting homemaker is trained by a professional to perform a specific clinical treatment. Our concern is that this skill could be transferred to another client where the treatment may in fact be contraindicated.

We would recommend that additional language should be provided that ensures that any trained but unqualified service provider who is delegated to complete professional functions be under the supervision of a person licensed with the Regulated Health Professions Act.

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Another issue we would like to discuss is, we support in principle the concept of a bill of rights for persons receiving services. However, the emphasis on consumer rights must be balanced with consumer responsibility. Consumers have a responsibility to actively participate in the care plan and work towards independence. We do not support a system that fosters consumer dependence.

We would recommend that language be developed in the act to define the consumer's responsibilities.

Paragraph 3(1)3 states that the recipient of services "be treated in a manner that recognizes his or her individuality," notably respecting "cultural, ethnic, spiritual, linguistic and regional differences." For example, the Haldimand-Norfolk region contains a population of Mexican Mennonites. Every effort is made to recognize their cultural and linguistic differences. However, we are unable to attract qualified workers from within this target population because they are not available or trained.

We would recommend that the government needs to articulate what is deemed reasonable within the scope of this clause. Moreover, funding is required to achieve the objectives of this clause.

It has been our experience that in some environments, case managers and service providers are placed at risk in providing care to the client. Locally, we all have policies to protect the physical safety and security of our employees. For example, we have encountered abuse of our service providers from Alzheimer clients when endeavouring to render care.

We recommend that a bill of rights for service providers also be included in the act that prohibits discrimination against the providers on the same basis as delineated for the consumer, paragraph 3(1)3. Moreover, language that safeguards the service provider from providing service within an unsafe or abusive environment should be denoted.

Ms Baker: The amendment to the Health Insurance Act implies that home care services will no longer be an insured benefit. We agree that health care expenditures must be controlled. However, the combination of deinsuring and fiscal restraint may create a system that parallels the current hospital sector. Notably, priority cases will receive immediate service and waiting lists will proliferate. Competition for resources, hierarchy for dollars based on one's acuity rate, will not promote community cohesiveness.

We recommend that the government give careful consideration to the potential impact upon all residents of Ontario in accessing services by deinsuring home care, should home care become deinsured.

We are also concerned whether the creation of multiservice agencies will actually generate cost savings and efficiencies through the integration of services.

We oppose wholesale amalgamation of agencies. No precedent has been provided for a successful MSA. In fact, perhaps the converse is true. At the joint annual conference of the Canadian Hospital Association and the Canadian College of Health Service Executives, the speaker from Manitoba acknowledged that a "health reform pause" is in effect in his province.

We recommend that the government defer the creation of MSAs province-wide until a cost-benefit analysis has been completed to determine the fiscal benefits and the efficiencies of this model. We also recommend that the government consider utilizing the Haldimand-Norfolk region as the control area to complete a cost-benefit and efficiency analysis.

In subsection 13(2), the not-for-profit policy, we are opposed to the government's prescription of limiting the purchase of services external to the MSA to 20%. Our local experience validates that competition is fiscally responsible; it reduces complacency by an agency; it promotes quality, efficiency and innovation in service delivery. For example, locally within our region, competition has fostered the creation of specialized services and skill levels which have created positive client outcomes.

We recommend that the government eliminate the 20% figure and give each MSA community the flexibility to determine its level of outsourcing of services. Guidelines to determine the level of outsourcing could include the cost of the service, the quality of the service, as well as the waiting lists that occur from services that are to be delivered by the MSA.

Mr Armstrong: We support in principle an appeals process. However, the appeals board should be the last resort after the issue has systematically proceeded through local intermediary stages. This would promote mediation and resolution to occur at the local level.

The recommendation here is that the appeals board should become involved in resolving a client-centred issue only after the appeals system at a local level has been exhausted. The local appeals process should be generic and consistent across Ontario, with specific time frames assigned at each step.

We believe the act may precipitate numerous appeals. After all, the consumer's preferences regarding the type and amount of service are to be delivered by the MSA. Moreover, it will be difficult to rationalize services within the MSA capped budget. After all, a capped budget has the potential to affect client care.

Our recommendation here is that if the appeals board rules favourably for the complainant, then the government must make the commitment to fiscally support the ruling.

We support in principle a takeover option. However, the process defined in the bill is unilateral and contrary to the community decision-making process, a cornerstone to the reform.

We recommend that the external party responsible for evaluating the agency be a mutually agreed-upon third party who is chosen by the minister and the agency, and that the ministry provide the notice to the agency by registered mail versus letter carrier.

The next issue is that the MSA may provide services outside the government's mandate and funding allocation. In the event of a takeover, the government shall have jurisdiction solely for the services provided by the MSA through the funding envelope.

Ms Toni: We are also concerned regarding labour implications. With all workers unionized and employed by one agency, the potential exists that a complete shutdown of the MSA will occur should a strike occur, resulting in cancellation of all client services. For example, the Red Cross homemakers' strike adversely affected the availability of homemaking for needy clients within Brant county and the Dundas area.

We recommend that the government develop a contingency plan in the event the MSA experiences a strike. We also recommend the government designate all MSA services as essential.

Ms Baker: We also want to share some human resource implications. The September 1993 government document entitled Partnerships in Long-Term Care: Guidelines for the Establishment of Multi-Service Agencies acknowledged preferential treatment of unionized workers from the community-based sector. However, in Bill 173, no reference was made regarding job security for union and non-union workers in the community sector.

We recommend that non-union workers be granted the same protection afforded to unionized workers through successor-rights clauses in the Labour Relations Act, and that positions within the MSA be filled according to two criteria: (i) current non-union and unionized employees within the local health and social services sector; and (ii) that all job requirements are actually met by the candidate.

Lastly, we recommend the government assume total fiscal responsibility for any severance package for any employees who may become unemployed because the MSA is created.

The Chair: Just before going to questions, could you tell me what CHARTS stands for, please?

Ms Toni: Community Homecare and Rehabilitation Services.

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Mr Tony Ruprecht (Parkdale): I want to congratulate you on your very descriptive and detailed presentation, especially on the specific recommendations you're making. I know, and you would agree, that the Price Waterhouse study shows clearly the inadequacies of the present system and we know that for almost a generation seniors have been calling for change of the present system, especially in terms of trying to empower community organizations and community groups to do this now.

You have indicated here that essentially you are in fundamental agreement with some of the objectives of the bill: one-stop access, improved services, consumer-focused systems, accountability and the improvements in the district health councils. The basic point I think you're making, however, outside of these specific recommendations is that you are afraid there might be wholesale changes made that could be termed radical.

My question to you would be to try to determine the specifics of your fear. In order to maintain some of these objectives and indeed to enhance them, how do you think that can best be done -- especially since the parliamentary assistant, of course, is listening very carefully on this -- without major changes that you might term as radical? How can that best be achieved, in your opinion?

Ms Baker: I believe there isn't a quick-fix solution to this, no question, and the reform certainly is promoting a lot of change. The service provider agencies feel, though, and certainly endorse that one must be cognizant of how many dollars are available in the pot for health care. They do feel, though, that the wholesale amalgamation is not necessary. They believe that they are committed to the goals and objectives of this reform, and that if they are given the parameters under which to achieve those objectives versus putting all the agencies under one umbrella called MSA, they could in fact achieve all the objectives within the reform without radical re-engineering of the system.

We don't presume to have all the answers by any means, but we're committed to the fact that we don't think putting all the agencies together within one pot or within this structure called MSA may be the answer.

What we propose -- and I'm not hedging your question, sir -- is that if you do follow through to implement MSAs, you'd have that experimental group as well as a control group. Our area is a control group for you to look at the benefits, both fiscal as well as efficiency benefits, that occur within our control group and compare that to the experimental group. From that, perhaps the proof is in the pudding, so to speak, but perhaps it would be much more palatable for people from organizations to look at the results of the study and say, "Yes, this MSA will work and it provides a better system."

We are committed that some things that we can do locally, something so simple as a 1-800 number to access services, could be the answer to one-stop shopping, versus radically reorganizing all agencies within this one umbrella, again being cognizant of any duplication in services. We're already moving within our area to create one assessment tool so that when the case manager does the assessment, the same information isn't gleaned from the client when the provider goes in. We believe we're capable of and have the experience and the ability to make changes to effect these objectives. But it doesn't need complete restructuring, and that's why we would offer our area as a control group.

Again, to give you a shopping list of how we could do many of these things without radical re-engineering of the system, I can't bring that before you today, but I'm pretty confident that our group as well as district health could work on avenues to achieve that end.

Mr Ruprecht: Then you are really convinced that these goals and objectives, which you really favour, because we've been crying out for change, can be achieved incrementally within these recommendations that you've made without a wholesale change. You think that's possible.

Ms Toni: I think one need only look at the transition steering committee in Haldimand-Norfolk. Various people, as you will see on your listing, have come from profit backgrounds, not-for-profit backgrounds, government, home care, consumer, and we were able to obtain a consensus to present to you today. We have differences of opinions, we work differently, but we maintained a consensus, and we have learned over those months to work with each other. So certainly even the basis of the communication base is already there in Haldimand-Norfolk.

The Chair: I apologize, but I'm afraid we're starting to run a bit late and I'm going to have to intervene.

Mr Ruprecht: I thought I could have another question.

The Chair: I apologize, Mr Ruprecht, but we are running a bit late. I want to thank you very much for the presentation, for the recommendations and indeed, to reiterate, the novel way in which you put those forward. We haven't had it quite as clear as that in all cases.

EDDIE KNAKOWSKI

The Chair: I then call on Mr Eddie Knakowski. Mr Knakowski, welcome to the committee. Please go ahead.

Mr Eddie Knakowski: First of all, I'd like to thank you for having me here and allowing me to speak. These things were in my mind for a long time, and now the election is over and let's hope we don't separate, we stay one country, because otherwise it will get worse in Canada financially, economywise and politically, and we will get a bad understanding worldwide. The best example was when in 1945 Germany was separated between the east and the west and given away by President Roosevelt. If you don't take all this into consideration, we will be in a lot of trouble.

I respect your Bill 173. There are just a few things I -- and I've talked to a number of seniors, men and women, and they would love to see a few changes. I don't know if you're able to do this; you should try. I'll respect you anyway.

I didn't come here to criticize you. I don't criticize the government. I like Canada very much. Canada has been good to me, good to many, and we should not forget this. But at the moment -- of course, it's been going on for quite some time -- as Paul Martin said, the deficit is out of control. So ladies and gentlemen in the government are trying to overcome the deficit to a certain extent. We can't do it all, but I agree we have to do something about it. But in order to do something about it, we should also take into consideration the administration. Do we have medical expertise? As far as medicine, when it comes to surgery, let's say, if a mistake is made, a wrong diagnosis performed, where does the patient -- the older, also the younger; I'm not just talking about the older -- the injured, find help?

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I'm talking from my own experience. I'm not mentioning hospitals; I'm not mentioning doctors. I have had very good experiences with doctors, and I have had bad experiences. I have had bad experiences with hospitals. I've been in hospitals off and on. I have talked to people; I have reached out to them. I care about them; that's why I'm here. I'm not just talking for myself. There is so much organization to be done. I don't care how they write things down. I'm not the best writer, but there is need for human understanding, for human caring.

Many times, I walk through the hospital halls. Luckily, my brain functions very well, but many of them do not any more because many doctors have prescribed so many medications or prescription drugs, and many of them are useless. If revenue would be less important, we'd have efficient drugs by the drug companies, the support of the doctors, your committee, workers' compensation and rehab centres.

I have seen it all, and I know what some people are facing. Men, women, I have seen children; they reached out to me, grabbed my hand, just talked to me. Many of them are just isolated in institutions. If this problem is not solved, it does not matter how many organizations you provide, it will not work. The cost will go up tremendously. You've got to have people with medical knowledge who are honest.

If there's a mistake made -- because very seldom does a second doctor speak up for you or stand up for you -- if this is the case, we should create, first of all, a special team of doctors who are capable, who are honest, who are not dictated to by the Ontario medical and hospital associations. I'm not running unions down. I think unions were a great thing, but they have gone overboard. Many times they protect, especially the Ontario Medical Association, the dishonesty of many doctors. I could go on.

I have been done wrong. I know quite a few who have been done wrong. They can't afford good counsel or a lawyer, but the Ontario Medical Association, they're able to provide this service, and many doctors take advantage of this; not all of them. A number of them, when you're there, they really try to cover up, because if something happens to you -- like an incident with my ear happened eight years ago, and I've been trying to find help to get rid of my pains everywhere. My eardrum was punctured in a hospital.

As I said, I'm not going to mention hospitals. I had steel chips in my ear. It was syringed. Instead of taking it out using a special instrument or treatment, the ear was syringed. The eardrum was perforated, my right one. Some steel chips must have gone inside. The doctor I saw afterwards, a specialist, said: "Ed, your ear should never have been syringed. Giving you medication, like Garasone" -- some of the medications, as I mentioned to you before, are very dangerous.

I wish your committee would supply -- I know there are good medical books around. There is one good one around and another one. It's the Compendium of Pharmaceuticals and Specialties, the 27th edition, which is used by doctors. It gives you good knowledge about what drugs do, what can happen. There are also good medical dictionaries, because for the ordinary person, there are certain individual words which are very hard to understand, but if you get yourself a dictionary from the University of Toronto, they teach it there, then you will understand. Another one is Martindale, 29 or 30, which also gives you an explanation.

Many doctors give you addresses and names, because they have experienced these drugs. This is what is lacking with organizations, it doesn't matter who they are. I have seen so many women and men suffering. They've been drugged. They get so many drugs, they don't know if they're men or women. As long as this is not stopped or looked into, the cost will go up tremendously because people will get sicker, they will get side effects.

Also, when you elect a director or supervisor, this person, man or woman, should have wide medical and also surgical knowledge, because so many administrators or directors are functioning now in hospitals. I am not just grabbing things out of the air; I know from experience. I myself have called organizations to get help for others many times. They say, "We can't do anything; you have to call so-and-so," or they slam the receiver on you. Then you go further, you call up the director who is responsible for this. He apologizes for this person who was rude to you.

This is what you have to look at, in my opinion, to get more medical -- you should get a good doctor running the hospital; I know they have doctors, but sitting in the administration who is the director. So then the responsibility can be given to this person. Otherwise, you have to go through so many, and you will get no support and you will be run down. Even if you go to the professions, they get support from the Ontario Medical Association. As I said, going through the big expense regarding a lawyer, in many cases, if they've been hurt, many people cannot even afford it. In my opinion, this is not fair and honest towards the patient or the injured.

I think the law in Canada has to be changed so that the individual who is being taken care of is protected from malpractice and wrongdoing. I know the service is available, but I know doctors -- not all -- take advantage of the service by the Ontario Medical Association. You think I'm running them down, but I know how they operate.

Every time you read an article in the paper, it will be delayed or it's just put under the table. The physicians and surgeons tried to implement, to make different rules to protect the patient. Every time they made a recommendation, the Ontario Medical Association interfered, and there was a delay. I brought only two articles along for you. I have many others.

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The Chair: I'm sorry, if I could just interrupt for a moment. I know there's one questioner. Perhaps you might just wrap up your comments. If you have some material there you'd like to share with us, the clerk could take that and make copies of it.

Mr Knakowski: Okay, fine. Lastly, even the profession's board -- I'm not running them down -- in many cases protects the doctor, even though they know he's not telling the truth. He is also protected by counsel, even if he damages you for life, which has been done in many, many cases; I know. If you get the right lawyer, if you can afford it, you might have a case. I'm not running doctors down. We need good, conscientious, caring doctors; we do have a number of them, but many of them just care about money and greed, and the patient comes second or third.

So everybody, including myself, has a responsibility towards each other. In many cases, if you get attendance right away if something goes wrong -- we all need help at times; we don't know it all, even doctors -- if help could be supplied immediately, we would have less patients in the hospital and less frustration and agony, and the patients could be helped immediately. I guess that's all I have to say.

Mr Gary Malkowski (York East): Thank you for your presentation. I'm going to ask the parliamentary assistant to make a couple of comments regarding the patients' bill of rights, which is included in the legislation to ensure that they respect the patient's right to choice and the right to access information, for example, when they talk about medication, because you were talking about the concerns of the patient. So I'll just ask the parliamentary assistant to comment.

Mr Wessenger: I think perhaps it's appropriate if I ask legal counsel to indicate the rights in that regard.

Ms Gail Czukar: The bill indicates that people have eight rights that would apply in any situation where they're receiving community services from any agency that delivers them for long-term care, and those would include the rights to be treated with courtesy and respect, to be free from abuse, preserving dignity and privacy and autonomy and that sort of thing. So I suppose we can assure you that, at least with respect to long-term care community services, attention has been paid to the rights of the individual, and it provides a basis also for groups such as patients' rights associations to have a platform from which to advocate.

Mr Malkowski: Are you comfortable with what you've heard this morning from legal counsel?

Mr Knakowski: Pardon?

Mr Malkowski: Do you feel happy with the comments you've heard in response, the protection of patients' rights?

Mr Knakowski: Yes.

The Chair: Mr Knakowski, thank you very much for coming before the committee this morning. We appreciate it.

Mr Knakowski: You are welcome. Thank you all.

OLDER WOMEN'S NETWORK

The Chair: I call on our final witness for this morning, the final representatives, rather, from the Older Women's Network, if they would come forward. We welcome you all to the committee.

Ms Ethel Meade: My name is Ethel Meade. I'm a co-chair of Older Women's Network. Next to me is Moira Bacon, a member of our council, and Evelyn Turner, who is the chair of our community care committee.

Older Women's Network is grateful for the opportunity to present its views on Bill 173, An Act Respecting Long-Term Care.

While we are affiliated, nationally and provincially, with major umbrella groups of seniors' and women's organizations, we ourselves are a membership organization. We fill a gap in both the seniors' and the women's movements, because seniors' organizations rarely address women's issues and the women's movement rarely addressed older women's concerns. Our main purpose is the empowerment of older women to overcome injustices and inequalities at home, in the workplace and in society by public discussion and by participating in a variety of community planning activities.

One example of the public discussion we initiate was the Home Alone forum last April, where the Minister of Health headed a panel of health care providers to answer questions from health care users on the platform and in the audience. The impetus for that meeting was the death of an 82-year-old woman who had been sent home from hospital in her hospital gown and left alone, with no care in place. Since the forum, we have gotten together with 14 other organizations, both consumer advocacy organizations and community service organizations, to press for appropriate transitional care when seniors are discharged from hospital before they can care for themselves.

In the area of community planning, a number of our members have been active participants in the consultations preceding the drafting of Bill 173 and we are continuing to participate in advisory committees on its implementation, as well as on hospital restructuring and the planning of neighbourhood MSAs. Our members also participate in a variety of community bodies, such as the Toronto Status of Women Committee, the Safe City Committee, the TTC's advisory committee on planning future subway stations, the Social Planning Council of Metropolitan Toronto, the Advocacy Centre for the Elderly, Trans-Action Coalition and the CMHC advisory committee.

As women continue to form the majority in the proportionately larger older segment of the population, the need to focus public attention on older women's concerns is increasing. Our work keeps these concerns on the public agenda while we challenge the stereotypes of older women with our visible community activism and our creative activities.

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Older Women's Network has been interested in the reform of long-term care from the beginning and we welcome and support the aims and objectives of this proposed legislation. We commend the emphasis on consumers' needs and the protections embodied in the bill of rights, section 3. Improvement in the delivery of in-home support services is overdue and we believe the new system will, in providing one-stop access, bring about a considerable enhancement of access to services. The comments on some aspects of the bill which follow are not meant to detract from our support for the aims of this planned reform. Our hope is to make feasible suggestions for its improvement.

First, family care givers: While never granting them recognition or financial compensation, long-term care planning for the frail elderly has always assumed that family care givers, usually women, would carry most of the burden. Community-based services were designed to give them some help and support, but never enough to substitute for their unpaid labour.

This has not changed with the introduction of Bill 173, but the world in which we are growing older has changed. There are now more seniors than ever before and even the rate of increase in our numbers is still increasing. But there are now, for many reasons, fewer available family care givers. Families are smaller today and more scattered. A large majority of the women our daughters' age are in the labour force, as single parents or as members of two-earner families.

The disincentives to leaving the workforce to care for elderly relatives are numerous and high. A wife who takes early retirement to care for an ailing husband takes a distinct financial loss for which there is no financial compensation. The loss will be particularly severe if, as is often the case in the present senior generation, she has started her career late because of child care responsibilities. A daughter who leaves the workforce to care for an elderly parent may not only damage her career prospects irretrievably; if she is 45 years old or more, she may never get back into the workforce at all. In either case, her pension credits, and therefore her future economic security, will be drastically reduced.

The reform of long-term care in Ontario still depends hugely on family care givers, but they now constitute a shrinking pool. The bill as presently written does nothing to lessen the disincentive for family members to leave paid employment for this role. It allows for homemaking services to ameliorate the care giver's burden, but these are services for which a fee may be charged. No fee exemption has been built in for care givers who are forgoing paycheques, nor is there a guarantee that any substantial time off for rest or recovery from any illness of their own will be provided to them promptly in emergencies and without cost.

Since the unpaid labour of family members, usually women, is the foundation on which community-based long-term care must rest, we strongly urge that family care givers be guaranteed three weeks' holiday time per year, plus whatever sick leave they require, the cost of this respite care to be completely covered by the appropriate MSA. To do this would be only minimal justice and some small encouragement to those who take on the care giver role. We must remember that the community, as taxpayers, could not conceivably finance the long-term care of the elderly without them.

Moreover, women who take time out of the workforce to care for young children can take up to seven years off without affecting their Canada pension plan entitlement. While this is a federal matter, we believe that the ministry should join us and other seniors' organizations in urging that this provision be extended to those who care for elderly relatives. Similarly, the income tax deduction for child care expenses should be expanded to include costs for elder care. Because family care givers are vital to the success of the plans envisaged by Bill 173, we think the Ontario government should take seriously every opportunity to make their situation more viable.

Ms Moira Bacon: The right of appeal against decisions of an approved agency outlined in section 32 of Bill 173 should be extended to family care givers, who may be as seriously affected by such decisions as the person cared for. Moreover, the freedom to appeal without fear of repercussions is particularly important to seniors and to their care givers because of their actual and perceived vulnerability. The act should therefore spell out the safeguards of this freedom.

Along with the freedom to appeal and the bill of rights, seniors and their care givers should be free to complain about inadequacies in the quality of care received. The only way they can be free of fear in reporting poor service is to provide a complaints bureau with the kind of independence and privacy protection now accorded to the Ombudsman's office and with the power to investigate and enforce appropriate standards. This provision should supplement, not substitute for, the proper monitoring of standards by the service-providing agencies.

Transitional care: Hospital discharge teams must be required to contact the appropriate MSA when a senior patient is discharged from acute care. The restructuring of Ontario's hospitals that has so far taken place has already made our hospitals into leaner and meaner institutions. Discharge from acute care is now enforced at the earliest possible date, which for seniors is often considerably earlier than they are able to care for themselves. For seniors living alone, this can be a life-threatening situation if adequate in-home care is not immediately made available.

Neither the care presently offered nor the care contemplated by Bill 173 can meet the needs of senior patients in the week or two following discharge after surgery or major illness. During this period, such patients may require 24-hour-a-day attendant care, in addition to visiting professional and personal support services. The availability of such enhanced in-home care must be considered an extension of the patient's rights under the Canada Health Act. It is a substitute for what only a few years ago would have been a normal extended stay in a hospital or in a convalescent facility. The substantial cuts that have been made in hospital funding necessitated the present quicker and sicker release from acute care. Some of the money saved must be made available for the enhanced in-home care that is now essential.

Older Women's Network, together with a task group on transitional care consisting of 15 service and advocacy organizations, has been and will continue to urge the ministry to stop this gaping hole in the seamless care it intends to offer through Bill 173. Regulations under the bill will not, as it is presently written, be able to address this problem. An amendment must be made to guarantee in-home care to the required level in the two weeks after discharge from acute care.

The role of family physicians: We support the position of the Ontario College of Family Physicians that discharge teams should be mandated to contact the patient's family physician before discharge and that MSAs should be mandated to include the family physician in assessing patient needs and planning for their care. Family physicians should also be able to access in-home services for their patients.

Eligibility criteria for persons applying for services have not been included in Bill 173. We assume that this is being dealt with through regulations in order to make possible future changes in criteria without recourse to legislative amendment. This assumption is only partly reassuring, however, because eligibility is the most important single aspect of the system of long-term care being proposed. By dealing with it in regulations, the government makes it possible for itself and future governments to use the narrowing of eligibility criteria as a means of meeting fiscal targets.

We also note with dismay that the advisory committee the ministry is consulting about eligibility and MSA design is lacking in consumer representatives. We feel therefore that the public should know and have an opportunity to respond to the eligibility criteria before the bill comes to third reading.

Volunteerism: We have some concern about the future of volunteerism in the highly structured long-term care system that will be established when the bill becomes law. While the bill does contemplate the continuance of volunteer activity, there is the potentiality for loss of spontaneity in community involvement. The least that can done to obviate this danger is to mandate a volunteer coordinator in every MSA.

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Finally, our deepest concern is about funding. Whether the promises of seamless and adequate community-based care for all can be achieved depends entirely on the enabling funds that are committed to it. Unlike the Canada Health Act, Bill 173 does not enshrine the right to care. An improved system of service delivery has been designed that should, in theory at least, make the available funds more effective. A small amount of additional funding, $400 million over three years, has also been proposed, but we have grave doubts that this amount will do more than cover administrative costs and increases in the numbers of the affected population between now and 1997.

The present community-based long-term care is inadequate, as well as fragmented and difficult to access, but improved levels of care are not guaranteed by a better delivery system, desirable as the latter may be. This is made clear by the provision for wait-listing in subsection 21(2). Will all the careful consultation and planning that has gone into the preparation of Bill 173 result in the right to get on a waiting list for an essential service?

We consider Bill 173 a very important initiative, representing a good start on the reform of long-term care in Ontario. We want to see it go ahead expeditiously to provide the improved access to care it was designed to achieve, but we hope also that in the process, the suggestions we and other organizations have made will be thoughtfully considered, to the benefit of the elderly and to their care givers.

Mr Tilson: Thank you. It will give the committee many thoughts, and hopefully the government will react, specifically to two of the items you've raised in your presentation. One is with respect to volunteerism and the other is with respect to funding, which appear to be your major concerns with respect to this legislation. It's not the first time, of course, that individuals have come to this committee, and I guess the whole issue -- I'm going to ask you to elaborate more on those two issues, specifically with the first one on volunteerism.

Perhaps you could tell me what you believe will be the impact of the multiservice agencies on volunteerism. There have been concerns, specifically by such groups as VON, the Red Cross, the Kidney Foundation, that the volunteers, and the thousands of dollars that they raise for health, are simply going to disappear.

Ms Meade: I don't know if it's going to disappear, but it's certainly going to create a different atmosphere for volunteer activities. Originally, almost every charitable community effort started out with the spontaneous action of a couple of people who saw a need and talked to a couple of other people and got a little something going and then spread it a little bit and finally began to get some funding and then finally became established as an organization that performed a community role. That kind of spontaneity seems to me very unlikely in an atmosphere that is as highly structured as these MSAs are going to be.

You also have the prosect of people who have long-time connections with community organizations feeling not as comfortable with the new structure and losing their energy, the enthusiasm, what makes them go. The thing that makes people give their time and their energy to volunteer efforts is often fed by the personal attention, by the personal connections, by the relations that they have with members of the staff of the organizations. I don't know how that's going to be affected, I don't think anybody knows, but we do think some special efforts need to be made to try and counteract an effect that is very likely.

It's not possible, I don't think, for anybody to predict exactly how this is going to work out, but if we have it in mind that volunteer work is important and necessary for all this to work, then I think having a volunteer coordinator mandated for each MSA is one of the things we could do about it.

Mr Tilson: The second question I have has to do with funding and its relationship to the whole issue of quality of health care. It's become quite clear that the home care services are going to be deinsured. The professional services, the support services will no longer be an insured benefit under the Health Insurance Act. It's been said by many groups that've come to us -- and I guess I'm addressing my comments for further elaboration on point 7, which is funding, in your paper -- that with this, and the added cost of bureaucracy and the fact that there has been no cost analysis as to what all this is going to cost and there are going to be even more bureaucrats providing less service in fact with respect to quality of care, with this legislation there will be a step backwards as far as quality of care is concerned. Could you comment, or do you have any --

Ms Meade: I'm more of an optimist. I think it'll stay even.

Mr Tilson: I'm sorry.

Ms Meade: I say I'm more of an optimist. I think we'll break even, that the extra money being introduced into the system may cover the extra administrative costs and the increased number of people who will need the service. But the fact is, we don't have enough service, and there's nothing in this bill that is going to give us more service. It's going to make it more accessible, easier to get, and that's all to the good and we're all for it, but that isn't all that's needed.

The Chair: Final question.

Mr Tilson: I guess my question that I want you to comment specifically on is the deinsuring of services. There's going to be a whole slew of services that members of the public have had in the past, everything from nursing to transportation, which are no longer going to be insured.

Ms Meade: My understanding was not quite like that. My understanding was that nursing, professional services and personal support services were to be free under this act; there were to be no charges for them. The only charges that seem to be contemplated are for homemaking and, what was it called, community support?

The fees are being worked on, as I understand it, by committees. We don't know what they're going to be. It certainly is our position that they should never be an obstacle to anybody who is in need of care because they can't afford these services.

I wouldn't call that altogether deinsuring. I think nursing services will be provided without cost to the patient, and personal support, which I presume to be coming in and helping people get baths and things like that, will also be without cost.

We are concerned, however, with family care givers who give up a job and cut their income drastically in order to care for a family member having to pay for any kind of help that they get. We think they should be exempt from any fees that are levied in connection with homemaking, which is one of the few supports that's available to them.

The Chair: Thank you all very much for your presentation and coming before the committee. The committee stands adjourned until 2 o'clock this afternoon.

The committee recessed from 1209 to 1405.

The Chair: The standing committee on social development begins its afternoon session.

At the outset, I note both for members and also those who are watching on television and those who are in the room, we have a very full agenda of presenters. The committee decided, because of the number of groups and individuals who asked to see us, that we wanted to try to hear from more people. The only downside to that is that it limits the time for questions. We felt that we'll have our opportunity in the Legislature to discuss some of these issues and the critical thing was to get people from the province before the committee.

That being said, most of the time, because of the time pressures, it means we can only have one questioner and I just wanted to indicate at the outset it's not because we don't have more questions to ask, but we do want to make sure we hear from as many people as we can.

SENIOR CITIZENS' CONSUMER ALLIANCE FOR LONG-TERM CARE REFORM

The Chair: I invite the representatives from the Senior Citizens' Consumer Alliance for Long-Term Care Reform to come forward. I want to welcome you all to the committee. We have received a copy of both your presentation today and also the report you had commissioned, which I imagine you will comment on in the course of your remarks.

Ms Jane Leitch: I'm Jane Leitch, the chairperson of the Senior Citizens' Consumer Alliance on Long-Term Care Reform. With me is Maryon Brecken from the Consumers' Association of Canada (Ontario), Allan Burnside from the United Senior Citizens of Ontario, and Beatrix Robinow, also from the consumers' association.

The Senior Citizens' Consumer Alliance for Long-Term Care Reform represents one million seniors and their families. While our individual members have been active in this debate for over the past decade, our alliance was formed in 1991 to give seniors and their families a unified voice in the dialogue about how services should be delivered to the elderly.

There appears to be no consensus among the stakeholders about how the long-term care system should be organized. However, while there is no consensus about what to do, after a decade of analysis, consultations and studies, we do know what the problems are. Simply put, they boil down to two issues.

The lack of coordination within the system: This lack of coordination results in seniors being shuffled from one agency to another, constantly being assessed and reassessed and often faced with gaps in services. Consumers have said it as clearly as they can, "We want a seamless system."

The second item is the high administrative costs of the system composed of over 1,000 single-service agencies. This of course is where the rubber hits the road in this debate. While nobody disagrees that dozens of agencies within a single community each have their own administrative structures for intake, assessment and payroll, human resources etc none of the provider agencies really wants to rationalize their operation. And why should they?

We believe that any attempt by any government to address the issues of coordination and duplicated administration will inevitably lead to something that looks like the multiservice agency concept. Our alliance strongly endorses this concept as an alternative to the current system. We strongly believe that MSAs will be more efficient than our current community-based system.

However, while we support the MSA concept in the introduction of Bill 173, our members have a number of concerns about the current draft of the legislation because we believe it does not achieve the outcomes that the government has stated as the goals of long-term care reform.

Specifically, we feel this legislation needs improvement because the government's reform policies promised consumers a seamless continuum of care, but the legislation in fact creates a host of new provider distinctions, maintains traditional community-based program areas and does not integrate community services with the rest of the health system.

The reform promised local community empowerment, but the legislation actually creates a framework of rigid, centralized control which actually discourages local innovations.

The reform promised consumers empowerment and strong voluntary participation, but the legislation actually creates a situation where MSA boards may be restricted to only one third consumer representation.

And the reform promised alternatives to institutional care, but the legislation actually removes OHIP protection from some community-based services and maintains user fees on a range of others.

Our brief will highlight a number of amendments to address these specific concerns. However, we want to be perfectly clear with the committee: We want Bill 173 amended and passed into law. We don't want to be kept waiting any longer.

Throughout these committee hearings, we know that you've heard from many organizations and individuals who are prepared to acknowledge the need for improved coordination but are not prepared to acknowledge the need for streamlining of services. We are very well aware that the MSA creation is complex, emotional and difficult.

Changing the status quo is never easy. We know that improvements in accessibility can be achieved without fully integrating our current multitude of community-based organizations, as required by the MSA model. We also know that, in the short run, more modest reforms might be easier to achieve and therefore more politically popular in the months preceding election.

However, our alliance is absolutely convinced that more modest reforms are not in the medium- or long-term best interests of the province as a whole because, while they might improve accessibility, they do not address the equally important challenges of improving the effective use of the system's limited resources. Simplified access won't mean much if there are no services to be had.

On April 18, 1994, Canada's Finance minister, Paul Martin, announced that in the next federal budget in the spring of 1995, there would be massive cuts in transfer payments to the provinces for health, social service and education, and this morning there was more on that.

We believe that if communities fail to develop comprehensive reform strategies that include their entire community-based sector, many of our existing, not-for-profit community-based agencies will simply collapse. We fear this would lead to rapid development of a two-tiered community-based system where only the wealthy can afford the services they need. Consumers do not want this to happen. Therefore, we're calling on each and every one of you to avoid allowing this legislation to be compromised in ways that minimize the ultimate objectives of full organizational integration.

Our perspective is based on the considerable learning that our members have accumulated through consultations with various stakeholders on this issue. Virtually every consumer and provider group that our alliance heard from during our hearing process expressed frustration over their existing home care programs brokerage model, which separates assessment and case management from service delivery. It was felt that this model was too rigid to respond to consumers' real needs, and resulted in the costly duplication of work and administration.

The vast majority of consumers and providers we heard from categorically rejected the service coordination agency, SCA, concept proposed in the government's discussion document. This concept, which was virtually identical to the earlier Liberal government's service access organization concept, focused solely on simplifying consumer access to the system. Both of these concepts were rejected by the majority of both consumers and providers because they maintained the costly brokerage system and therefore did not address the high administrative cost of the current system.

It has been conservatively estimated that the administration and overhead cost of our plethora of single-service community agencies consumes 30% of expenditures for community-based care. I'd like to ask the members of this committee to focus on that 30%. This represents about $200 million currently being spent on administration rather than service provision in our community-based system.

Whether or not to streamline the thousands of single-service agencies within our current community-based system to ensure the survival of a public system of community-based care will be one of the tough choices governments will have to face in the coming years. Our alliance wants to know, where will you stand?

Consumers' assumptions about multi-service agencies: While our written submission to the committee proposed a number of specific recommendations for amending Bill 173, we want to focus our time today on highlighting some of the assumptions that we've heard about the MSA model and clarify the alliance's perception of these issues.

First, we often hear concerns that MSAs will not be more cost-effective than the current system because the overall administrative cost to volunteer agencies is relatively low. At a press conference earlier today, our alliance released a costing analysis of the current and fully evolved MSA models prepared for us by the firm of Price Waterhouse. Copies of this report are included with our submission to this committee. In that report, Price Waterhouse have stated that conservatively, administration and overhead accounts for 30% -- almost $200 million -- of the expenditures within our current community-based long-term care system; and within a fully evolved MSA model it is conservatively estimated that expenditures on administration and overhead will fall to 16.2%, allowing approximately $167 million of our current system's budget to be redeployed in service delivery.

Price Waterhouse findings are consistent with a 1986 comparative study of two different home care program models in Calgary, Alberta. This study concluded that when case management service is separated from service delivery, as our current system is, there were 36% more visits, each visit cost 21% more and clients retained on the case load for longer periods of time. Taken together it was calculated that total cost of the brokerage system was 48% higher per client.

We know that many organizations throughout the province are operating very efficiently. However, the cumulative effect of having a multitude of single-service providers operating separate and apart from an independent case management infrastructure creates a tremendous administrative burden.

Another concern that's often raised is that the MSAs will be large government bureaucracies that are accountable to Queen's Park, not their own communities. MSAs will no more be government bureaucracies than hospitals, community health centres, existing non-profit community-based agencies or other transfer payment agencies. Furthermore, Bill 173 makes it very clear that the MSAs are to be independent, non-profit community organizations governed by representative community boards.

Fear over loss of agency choice is certainly a myth from a consumer's perspective since, today, choice of agency is often dictated by the home care program's contracts. Furthermore, our alliance believes that the area where choice is paramount to the consumer is his or her relationship with an individual providing hands-on care, not who the agency employs.

Another fear often expressed about MSAs is that they will undermine volunteerism within the community-based system. Our alliance does not believe this is valid. In fact, we're very optimistic that given the high degree of local participation required in MSA development, local volunteer loyalty will be maintained. Furthermore, we suspect that MSA models may actually generate higher volunteer involvement through coordinating volunteer recruitment activities and the ability to offer volunteers a great range of programs to volunteer for.

While it's true that some volunteers may have strong identification with particular agencies, we believe that the majority of direct service volunteers identify with the consumer whom they serve. We believe these personal relationships will remain in the MSA creation model.

The allegation has been made that MSA creation will have a devastating effect on fund-raising. We are confident that if MSA boards were made up of committed, community volunteers, they have the potential for greater success in local fund-raising because they would be capable of mounting comprehensive fund-raising campaigns that would eliminate the current competition between community agencies for scarce fund-raising dollars.

We have heard concerns that the MSA will be in conflict of interest since it's both the purchaser and the provider of care. We do not share this concern since this dual responsibility already exists within public hospitals. Furthermore, we can't imagine this conflict being an issue if assessments are conducted by multidisciplinary teams of professionals, all of whom are accountable to their own professional colleges.

The alliance analysis of Bill 173 reflects our own assumptions about what the outcome of MSA creations were meant to achieve. Overall, we feel that while there are a number of very positive elements to Bill 173, the current draft of this legislation is too vague in some crucial areas and too prescriptive in other areas. As a result, we have a number of concerns about the bill's ability to actually realize the stated outcome.

To eliminate service fragmentation within the legislation, we recommend the current program distinction contained in Bill 173 be eliminated, and replaced with the comprehensive listing of mandatory MSA services. Subsection 12(2) of Bill 173 requires ministerial authorization to provide services in addition to the mandatory MSA services, and we think this should be eliminated. A clause should be included which empowers MSA boards to establish relationships with other community resources to ensure a true continuum of care for MSA clients.

Our alliance believes that unless MSAs are assured global or per capita funding, it will not be possible to achieve the design of a truly seamless system of community services. Therefore, we recommend that Bill 173 clearly state that MSAs will be funded on a global and/or capitated basis.

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Our alliance is very concerned that Bill 173 has been written to encourage the wide establishment of user fees and means tests throughout the community-based long-term care system. We do not accept, given the waste and duplication in our current system, that user fees are an inevitable consequence of long-term care reform. Therefore, we recommend that Bill 173 be amended to say consumer charges and means tests are not permitted under the reformed long-term care system.

We believe the legislation is far too vague in its guidelines on board composition for MSAs. One of the greatest concerns is that MSA boards will emerge as federated governance structures dominated by existing long-term care service provider organizations.

To strengthen the governance structure of the MSAs, the alliance recommends that the legislation be amended so that consumers, current and former users and members of the community not currently working in the long-term care system must make up the majority of the MSA board; employees of long-term care service provider organizations are prohibited from becoming board members of the MSA; and MSA boards should establish professional advisory committees to provide the necessary health and social service expertise.

The alliance is pleased that Bill 173 amends the Health Insurance Act to allow services currently provided within Ontario's home care program to become part of the MSA. We believe that this amendment sends an important signal to the communities that full organizational integration is the intended outcome of MSA development. However, we're extremely concerned that the protection consumers once had that home care program services were insured under OHIP has not been retained in Bill 173.

To address this issue, we recommend that Bill 173 be amended to continue to insure under OHIP those home care program services that are currently insured in the health care insurance act.

Our alliance fully supports the bill of rights outlined in Bill 173. However, to strengthen its impact, we recommend that Bill 173 be amended to allow the minister to order sanctions or fines on agencies found in violation of the bill of rights.

We support the legislation's requirement that all MSAs establish a quality assurance mechanism. To enhance that quality assurance program outlined in the legislation, we recommend:

-- Explicit provincial standards for quality be established using the work of the Canadian Council on Health Facilities Accreditation as a possible model.

-- Require that MSA quality assurance programs include measures of consumer and employee satisfaction.

-- Require that the results of the MSA QA program be submitted annually to the district health councils and that the public be permitted to review that material at their local DHC.

The alliance fully supports the establishment of an appeals process. However, we're concerned that having a provincial appeals body as the only mechanism for consumer appeal will be too intimidating for many consumers.

To address these issues, we recommend that Bill 173 be amended so that in addition to maintaining the provincial appeals structure, each MSA board be required to establish its own impartial appeals complaint tribunal which reports back to the MSA board.

Since a central thrust of Bill 173 is to ensure that consumers have simplified and improved access to a wider range of community services so that alternatives to institutional care exist, we believe that the legislation's requirement that approved agencies keep waiting lists needs strengthening.

Therefore, we're recommending that service waiting lists be monitored by MSA boards on a quarterly basis at minimum and that MSA waiting lists be shared with district health councils in order to facilitate coordinated regional management of emerging service access problems.

We applaud the legislation's intent to give consumers the right to access their own personal records. We believe these mechanisms will be essential if consumers are to become meaningful, credible partners in their service plan decisions.

Therefore, we urge that part VI, subsection 29(2) be preserved unchanged in this legislation.

In order to maximize the full range of professionals within the MSA, our alliance would like to see the legislation specify multidisciplinary assessment and service plans.

Therefore, we recommend that Bill 173 be amended so that part VII, subsection 20(1) reads, "Assess the person's requirements using a multidisciplinary approach."

Finally, our alliance is pleased to see the role of the district health councils enshrined in the legislation. However, while the district health councils have been given numerous mandates to provide leadership in the reform of their local acute, long-term care, mental health and primary care systems, they still do not have legislation to govern them. We therefore recommend that DHCs have their own act governing their mandate, authority and accountabilities.

In closing, our alliance would like to emphasize with this committee that our members see the success of long-term care reform and MSA creations as critical to the wellbeing of elderly consumers and their families. We do not want this legislation delayed any more. Many of us have been talking about reform for years; now we'd like to see some action.

We are therefore looking to each and every member of this committee not to undermine the MSA concept but rather to take a leadership role, within your caucuses and within your communities, to help forge a shared understanding so that reform can continue to move forward as quickly as possible.

Thank you for your attention and we would be glad to answer questions.

The Chair: Thank you very much. I wasn't sure when we started how you were going to be able to get through so much material, but you did a superb job of summarizing that. Again I'll just note that you have also provided us with the report that was commissioned by you and that we've read about today.

Ms Leitch: Right.

The Chair: We thank you very much for that. Again I regret very much that we have such a limited time for questions, but there's a great deal of material, needless to say, in your document which we will be looking at very carefully.

So with that, I'm going to ask members this afternoon, again because of the time constraints, to have a question and supplementary. You'll feel right at home with that because you'll feel you're back in the Legislature. Ms O'Neill, if you could set the first example.

Mrs O'Neill: Thank you, Mrs Leitch and other members of the alliance. I have met with you on more than one occasion.

I'm very happy that you were so forthright in your presentation this afternoon. I think you have done an awful lot of work on this bill and I think we should be very happy and thankful that you've done that. The role of the minister, the global funding, the OHIP coverage, the appeals process being local, the waiting list, the multidisciplinary approach to assessment, those are all things we've heard from several of the presenters to this point and you have given us explicit recommendations on how those could be incorporated in this bill.

I didn't have a chance to go to your press conference this morning because I've been here, but I wanted to ask you if you could say a little bit to us about the assumptions that that study took and how you feel about the assumptions, because in some ways I think they tie in with some of your concerns about the bill. The assumptions regarding the costing levels -- this is on page 3, if I may, of the report you gave us -- are that the MSA will incur higher administrative costs than the current home care programs due to expanded scope of responsibility. That'll be distributed 30% to administration and 70% to consumers and then the case management funding remains at the 1992-93 level and the diagnostic expenses remains at the 1992-93 level for the MSA budgets. Do you agree to those assumptions? I find those assumptions quite worrisome because of the growth of the population, because of the mandatory basket. I guess I'm finding difficulty with those assumptions. I wonder if you've had a chance to discuss them with Price Waterhouse.

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Ms Leitch: I think Allan Burnside is prepared to answer that question.

Mr Allan Burnside: On the assumptions that Price Waterhouse used, they were using the 1989, I believe, figures that were provided by the government and by various agencies. We feel that they are still valid today because the assumptions that -- well, they came up with a figure of $197 million in the current system, and on their analysis they come up with a surplus of $91 million. So there is a saving there in the administrative cost on the community programs, and they've done this all the way through.

Mrs O'Neill: All right. I just wondered if you had questioned them on their assumptions.

My supplementary then: You have expressed in your first concern that Bill 173 does not integrate community services with the rest of the health care system. I'd like you to say a little bit more about that. I want to be sure I'm interpreting that correctly.

Mr Burnside: Is that the --

Mrs O'Neill: You have that on page 2 of your brief in your very first concern.

Ms Leitch: Would you repeat the question, please.

Mrs O'Neill: Your very first concern on page 2 states that, "Bill 173 does not integrate community services with the rest of the health care system. I want to be sure I understand that.

Ms Leitch: There are a lot of support services that are community services that are not covered under the health system, and we feel that it's very important that that be part of the whole picture, but that that shouldn't cost us more money if we can save it in a lot of other ways. This indicates that if there's assessment and service delivery from one point, it will save a lot of money in management fees and so on, and all this will be able to pick up, we think, a great deal of money that can be used for direct services. We'd like to think that some of the community services, some of the social services were also included in that.

The Chair: Thank you very much. I think it's fair to say that after we've had a chance to look at the report that was commissioned, individual members may have some further questions where we'd want to get back to you, and we will do that, but I want on behalf of the committee again to thank you both for the brief that you provided us with today and for that background document.

Ms Leitch: Thank you very much. We hope you will read it all.

FEDERATION OF PROVINCIAL NON-PROFIT ORGANIZATIONS WORKING WITH SENIORS IN ONTARIO

The Chair: I call on the Federation of Provincial Non-Profit Organizations Working with Seniors in Ontario. We want to welcome you to the committee.

Dr R. Gordon Romans: I'd like to start off by complimenting the committee on the extension of the period for consultation, because I think the maximum consultation is going to be required in order to get highly satisfactory long-term care.

The federation of non-profit associations working with seniors in Ontario fully supports the original direction of the new long-term care, where it's equality of access and the fact that it was consumer-driven. As you are likely aware, the federation has responded at various times during the proposed development.

More recently a letter was sent to the minister concerning the apparent discounting of the role played by volunteers in the system. The use of volunteers is cost-efficient, but not for nothing. It is hoped that the task force and the role of volunteers will define the expected use of volunteers and will pay attention to problems of recruitment, training and retention of volunteers. This of course will assure the large part of the success of the new care system.

The federation, as you probably know, is a group of about 13 or 14 associations which are listed in our brief. You will realize that, as with all partnerships, the federation evolved over four years based on mutual respect, consultation, negotiation of differences and the primary goal of meeting consumer needs. By accepting a developmental, process-oriented approach, the federation has successfully mediated among conflicting points of view to establish common positions and practical solutions to problems.

With such a diverse group of members, the federation's approach in reviewing Bill 173 has focused on areas of complementary views. However, some of the individual organizations holding membership in the federation have not had the opportunity to review and/or endorse this brief. Therefore, the following federation comments do not necessarily reflect or represent the views of the Ontario Community Support Association or the VON or indeed the Red Cross. It is my understanding that these groups are all making their own submissions.

After reviewing Bill 173, An Act respecting Long-Term Care, it is evident that the province has attempted to implement those values and principles. The draft legislation recognizes the importance of consistency in the design, delivery and funding of community services, as well as the need for equitable access to services across the province. The province has also attempted to address the ongoing concern of consumers with respect to the need for information about, referral to and coordination of services to improve the process of access.

The principles contained in the redirection paper in 1991 appear to have been lost in some aspects of this bill. As an example, the consumer is not seen as the focal point of the system. The consumer has been replaced by the MSA and its set of rules and procedures.

The service system was to be integrated. In Bill 173 we see fragmentation, segregation or severance and continuing distinction between some services.

Cost-effectiveness has to be a central element. The MSA model with its inherent prescribed structure and operation will not be cost-efficient and will actually siphon funds from service delivery to implement the new multilayered bureaucratic structures.

Although the draft legislation is a well-meaning attempt to reinforce the government's vision, it is so detailed and prescriptive that it will result in the province micromanaging the system. Moreover, the legislation defines a rigid system based on eligibility criteria, rules and procedures and does not respect the many strengths of the existing system.

Legislation is not the place to be overly prescriptive; prescribing the details of the system belongs to regulations and guidelines. I might add that it will be easier to change the regulations at the end of the four-year period rather than redesign the legislation.

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The federation presumes that the primary purpose of the legislation is to ensure that consumers have access to appropriate care, but the statements do not speak of the original vision of meeting the needs of the consumers by creating an integrated health and social service system. Also, there is no mention of support to families and care givers in the statement of purpose.

The federation compliments the province on its determination to implement the ideals of the original redirection. However, it questions some of the means proposed in Bill 173.

The draft legislation prescribes regulatory processes that virtually assure the development of a rigid, inflexible and hard-to-change system. At the beginning of the redirection, people asked for improved access to services, elimination of repetitive assessments and an improved information and referral system. The draft legislation, perhaps inadvertently, marginalized consumer requests in its quest to redress the imbalance between facility-based and in-home-based care. This indeed is leading to a cookie-cutter legislation, which the minister repeatedly says she doesn't want, and indeed leads to what we might call micromanagement.

The design of multiservice agencies: Presumably, district health councils across the province are working within their respective communities to design and develop MSAs. Ostensibly, the province intends to encourage local community involvement in planning. Yet before the DHCs have had time to design their MSAs, the draft legislation proposes the form, administrative structure, accountability and service configuration of the agencies.

The federation would request the release of information with respect to the service need projections and an accompanying outcomes assessment based on cost analysis of the legislation as it has been presented before third reading.

The federation requests that the province reconsider the criteria for designating programs as fully funded to permit broader application of user fees subject to a simple, non-intrusive means test such as is currently used by the home support service agencies.

Will the MSAs refer clients to services that it does not provide or if they are not eligible for MSA services? Will the service plans and other relevant documentation be written in plain language for the benefit of clients? And will the people be able to access additional services if the system's financial resources are unable to provide for their needs?

The rest of our brief is detailed consideration of the various parts, and we have presented today in the form of a table which becomes easier reading than to listen to verbally, but it is designed for two things: It is designed to make the system less cookie-cutter and it also is designed to remove some reasonable sections from the bill to be put in regulations, where they can be more easily adapted. Those parts would pass comments on part I of the regulations and suggest some amendments:

-- To recognize the person's needs as the most important factor in managing and delivering community service, and individual preferences as another major factor.

-- To ensure that a wide range of community services are available to people in their own homes and in other community settings appropriate to their needs.

-- To promote equitable access to community services, both across the province and within communities, using a person's needs, consistent service and assessment standards.

Then, going to part II, the draft legislation perpetuates the fragmentation caused by the existing distinction among community services, particularly those categorized as community support, homemaking and personal support services. The listing of services must be adjusted to permit sufficient flexibility to accommodate as yet unforeseen services and client needs. There again we suggest some amendments to section 2 to bring these things about.

Going on to part VI, and here it has to do with the governance: In keeping with previous comments, the federation suggests that the draft legislation represents an attempt to micromanage the system. The province evidently does not trust the basic district health council-led community planning process which it has proposed and which is being implemented in communities across the province.

Finally, the province is sending out a very unfortunate message in relegating municipalities and boards of health, both representing the electorate, to a secondary place for consideration as multiservice agencies.

I think I might add here, to divert, that the MSAs haven't been sufficiently defined, to the best of my knowledge, that there is any ability to estimate the expected model of the new system, namely, one-stop access. At the moment, to the best of my knowledge, I find that there are going to be at least 15, if not 19, MSAs in the metropolitan area, and this certainly is a complication when it comes to making access to the system.

Seeing you have all the other suggestions in detailed form and the suggested amendments to the various sections, I think I've covered my time and I thank you very much for your patience in listening to me.

The Chair: Thank you very much for the submission and the detail of the recommendations.

Mr Jim Wilson: It's really Dr Romans, is it not?

Dr Romans: Yes. Not medical, though.

Mr Jim Wilson: No, but it's PhD.

Dr Romans: I don't want to get myself into --

Mr Jim Wilson: You served on the board of governors of the University of Toronto at one time?

Dr Romans: Yes. I have worked for the university all my life. I was director of the insulin division at the Connaught lab when I retired. I worked in --

Mr Jim Wilson: I served on the board of governors at the same time you did.

Mrs O'Neill: You must have changed, but he didn't.

Mr Jim Wilson: It really is a few years ago, actually.

Interjections.

The Chair: At that time, though, they were his fault, not yours.

Mr Jim Wilson: There were 52 of us, so rather a large board.

But clearly a great deal of hard work's been done and you bring to us a number of recommendations. Rather than ask you about that specifically, you know the group before you has suggested that perhaps we're wrong in terms of our opposition to the legislation. Multiservice agencies, according to the senior citizens' consumer alliance, should save at least administrative dollars, which then can be better directed towards front-line services.

I guess the problem I have is that the history of government in this province has shown that the larger the organization and the more centralized, the greater the expense. I think of regional government, which I just went through in my county, and we now have the first deficit in over 100 years; superministries, which all governments across the country have experimented with from time to time, and we end up dissolving them and going back to smaller units; large school boards, and there's a real cry out there now to decentralize them and go smaller.

I just want to know your general feeling about these MSAs, the theory being that if you've got about 1,000 community agencies out there now and you dissolve them all and put them under 40 or 50 or whatever the number will be of MSAs, you should save administrative dollars. To me that flies in the face of the actual history of the province in our attempt to do that, because we usually end up dissolving community agencies, many of which have volunteer boards and that sort of thing, replacing them with a superministry with several more departments and several more bureaucrats and higher-paid people.

Secondly, we've also been told by the unions that costs will go up because of unionization in the sector. I'm not against unionization, but over half the community-based workers now aren't unionized. If you put them under one roof and combine that with our new labour laws, you have an application very quickly before the labour relations board which will essentially be a rubber stamp.

So if you could deal with that and the costs, because we're now being challenged, as of the last presentation, that our assumptions are wrong, and they've done a study. I note the study doesn't tell us what will happen if donations stop and they don't tell us how they'd replace the monetary value of volunteers in the current system, but that aside, I do challenge the notion that bigger is better and I wonder if you have any comment on it.

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Dr Romans: I obviously don't have time to really consider that, but it seems to me that with the MSAs there's going to be a consolidation of volunteer organizations, and those volunteer organizations at the moment raise a fair bit of the volunteer money which carries the system. I'm not sure, and this is why I emphasize the importance of what's going to happen to volunteers, because I think there's no guarantee at this stage. When a partial function of the voluntary organizations goes to the MSAs, I'm not sure that's a guarantee that the volunteer organizations will have the same ability to raise the same proportion of their expenses that they do now.

That again is off the top of my head. You've asked me a tough question and I don't have the benefit of a financial consultant to back it up. But certainly our feeling is that the MSAs are going to be the driving force and will take a reasonable bit of the money because they're going to do part of the job that's now done by the volunteer organizations.

Mr Jim Wilson: You made the comment that the government should provide a cost-benefit analysis prior to third reading. How strongly do you feel about that?

Dr Romans: I think our general answer to that is that for this group and the government in general and the other groups who are trying to be helpful, the more precise information we have, the better the chance that we're going to make right decisions, and I think there's no guarantee of that at the moment.

MARLENE MULDOON

The Chair: I call on Marlene Muldoon. Ms Muldoon, welcome to the committee. We have a copy of your presentation. Please go ahead.

Ms Marlene Muldoon: This opportunity to speak to the standing committee on social development allows me to present a perspective from an individual who works on a daily basis with providers and consumers, and I'll hereby refer to consumers as "clients" in my presentation.

My presentation mainly refers to section 20 of Bill 173, which outlines how a plan of service is devised for a specific client, and also subsection 20(3), which identifies those who will be involved in the development of this plan of service.

Under plan of service, assessing the person's requirements, determining the person's eligibility for the services that the person requires, and developing a plan of service are responsibilities that the home care case managers are presently doing throughout the province. We refer to these roles as assessment, monitoring, evaluating and improving the quality of services. On the average, using my employer program as an example, a case manager yearly authorizes a quarter of a million dollars in services to home care clients. This translates to $17 million of services authorized to clients receiving services just within one program in one year by 25 case managers. This is just the example I'm using.

Since the inception of home care programs in 1958, funding for these services has been uncapped, with no awareness on our part of how much money is spent on individual care in clients' homes and how we compare with the rest of the province. In my day-to-day assessments and reassessments, a case manager is often asked by her clients: "Are these hours putting a burden on the program? Am I receiving more or less than others on the program?" Clients are asking for information on what their care is costing the system. They are also asking to be more a part of a cost accountability system of care. What I'm envisioning and recommending here is a more cost-directed care whereby the case manager would closely monitor costs generally and in relation to an average care map for the area and the province.

To elaborate on the care map, a care map is an approach used to coordinate care in some home care programs. It's a standardized plan for clients who need different categories of care. What I am also proposing is a cost care map that would also track the average cost of the care within a certain category. For example, a client is admitted to the home care program for a fractured hip. A cost care map establishes benchmarks for their care, and the client's recovery would be closely monitored and compared to the average cost and activity for that category for the area and the province. This gives the case manager who is monitoring the overall care guidelines in authorizing the client's care and the overall incurring costs.

Case managers generally have the first contact with clients, as we do most of the initial assessments. At the present time, each provider also does his or her own assessment. This creates duplication. To become more cost-effective, a comprehensive universal assessment tool is needed that is layered or sectioned for appropriate providers to use as well. Following the initial assessment using this universal assessment tool, the client and case manager determine what providers are required according to their needs. If only one service is needed, like therapy or nursing, this provider can manage the care with the client or care giver in charge. The case manager who has done the initial assessment need only monitor the overall costs and activity within the client's care. If costs are exceeding the average cost, these circumstances would be documented. This approach achieves more cost accountability and good-quality management of care within each client's home.

Also, in many situations a client can direct their own care. One example is a situation where there's one monthly visit required, for example, for catheter care. Bill 173 emphasizes tailoring care provision to fit the consumer's need rather than adhering to rigid, inflexible program rules. This modification also allows for a more cost-effective service, so we're certainly endorsing that. Therefore, with a continual, ongoing cost accountability system in place with the client in the forefront, cost containment can indeed be a reality.

In summary, what I'm proposing we need is a client-driven care system based on benchmarks or averages established by cost-care maps for each area; a common database used by all providers which includes cost monitoring or cost analysis; and, third, a universal assessment tool to avoid duplication by case managers and providers.

The Chair: Thank you. I note on the front of your submission that you're involved in home care in Grey-Bruce.

Ms Muldoon: Yes, I am. I'm a case manager with the Grey Bruce Home Care program.

The Chair: We thank you for taking the time to come down before the committee. The parliamentary assistant has a question.

Mr Wessenger: Thank you very much for your presentation. It's interesting hearing case managers and what role they play. I think it would be useful to myself and perhaps also useful to members of the committee to understand the extent.

You raised my interest when you mentioned about the need to monitor each individual case by a case manager, and you were referring of course to some of the financial aspect. But what I'd like to sort of explore also is, at present, do case managers continually monitor the care being given to the particular client? Is there a process where they monitor it?

Ms Muldoon: Monitor in terms of the type of services?

Mr Wessenger: To see how it's working.

Ms Muldoon: Yes, we do. We do reassessments every three months for the clients on our chronic care program.

Mr Wessenger: In other words, you do an initial assessment and then a reassessment.

Ms Muldoon: Yes.

Mr Wessenger: Is there direct communication between yourself and people who are providing the service at the present time? Would the person providing a service, if they saw a problem, call you directly?

Ms Muldoon: Most definitely. We conduct regular conferences with the providers who are involved with the different clients.

Mr Wessenger: So if, for example, a client expressed a wish to change their plan of service with the provider, that provider would then contact you directly?

Ms Muldoon: That's right, and then we would discuss the change. It would be with the client as well.

Mr Wessenger: Right. And you say that you don't think the present system has enough flexibility with respect to meeting the clients' needs?

Ms Muldoon: That's right, because we have mandated standards that we have to do throughout our case loads, so if in some circumstances the provider can manage their own care, I think that would be fairly feasible, if it's just one provider involved with the client. What I'm proposing, then, is that the case manager just overall monitor the costs of that particular --

Mr Wessenger: And also give you more flexibility in your --

Ms Muldoon: That's right.

Mr Wessenger: In other words, if they loosen some of the rules and give you more judgemental flexibility --

Ms Muldoon: And we give the provider also the judgement.

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ROSALYS LAWRASON

The Chair: I call on Rosalys Lawrason.

Mrs Rosalys Lawrason: I thank you very much for this opportunity to speak on Bill 173.

I am a consumer, also a care giver, and since 1991 I've followed very closely where I could the progress of the long-term care reform. I've been a member of the consultation advisory group, the city of Toronto working group, I'm currently on a work group steering committee of the district health council and we're working on in-home and community support.

Two years ago I became a member of the board at SPRINT, Senior People's Resources in North Toronto, the agency which provides us with in-home respite care from the Alzheimer dementia program.

I've been caring for my husband for the past eight years. He is cognitively impaired, with very limited physical mobility and other medical conditions. He requires 24-hour supervision and assistance with most aspects of daily living.

My goal has been to keep my husband at home as long as possible. In 1989, I found I could no longer manage alone and my husband was put on the chronic home care program.

I am indeed grateful for all the assistance I've received from Metro home care and many others -- I haven't done this alone -- and most noticeably the services of the social worker and occupational therapists from Community Occupational Therapists and Associates. The COTA worker has helped me with all the equipment that was needed for safety in the home and arranged for the walker, wheelchair and Wheel-Trans. I would just like to say, about Wheel-Trans, that it has been absolutely marvellous, and we've been on a pre-book system when we go out. The worker also arranged for the adult day program and now continues to assist me with lifting, and when she sees my husband, she comes and does exercises and ambulation with him.

The services of the social worker have been invaluable in assisting me to plan for the future re financial, legal and placement. When she came to us initially, she encouraged me to look at in-home respite care.

Both professionals, the COTA worker and the social worker, have provided me with so much support and encouragement in my role as a primary care giver. I don't have any of the things everybody wants, like family on hand to come and relieve me and do all these things. I'm alone and I think there are probably others like me.

I now wish to focus on the value and importance of in-home respite care. The workers we have come from SPRINT. They're well-trained, they're supervised and they're dedicated to caring for the elderly and the cognitively impaired. They have demonstrated caring in a caring and empathetic manner. They show respect, understanding and determination to keep my husband functioning at his highest possible level. It's interesting that they view the family as a whole.

One of the most important things to me is that I deal directly with the social worker at SPRINT who makes these bookings that I request. The same workers are assigned, and that has been my salvation, the continuity of care. I'm then free to make plans for activities for myself. Free time for a care giver is essential, and to me it's very precious. It's made possible by these workers to whom I entrust my husband's care in my absence, with the knowledge that he'll be cared for according to his needs and my wishes.

A further advantage to me is that the fee is affordable. SPRINT is subsidized by Community and Social Services and the United Way. I pay $7.75 an hour versus what I think is the current rate in the community from an agency of $18 an hour. So it's easy to see, if I'm forced into that sort of situation of a private agency, that my time would be cut in half. I spend approximately $4,000 a year on respite care and, as I say, I can never leave unless somebody's there in my place.

It's for all these reasons that I suggest in-home respite care be included as a separate entity under both community support services and personal support services. It's truly essential to a care giver and must be affordable and easy to access.

On the access, what I'm trying to get across is that I want to go out when I want to go out and not have a booked time. I can pre-book but things come up, and it's let me lead a more normal life when I can choose when I'll go out. We do have an excellent homemaker. She comes at set hours and she's involved in personal care. I have her eight hours a week and then I use SPRINT on a fixed eight hours a week.

The services listed under "Interpretation" as care giver support services are all valuable. I hope that these services could be made available in the home if necessary. It's unlikely the care giver can afford to pay for respite care to attend an educational series, and these quite often run and may be a series of eight. The other time it would involve a support group. It's hard to plan all those extras.

One suggestion I have as far as the education of a care giver at home is that a professional with psychogeriatric skills in a case like ours be the person assigned to visit on occasion; not always, not often. Another suggestion I have is possibly a hotline. You do get into trouble and all you need is somebody who can give you probably a simple answer.

I noticed that the adult day programs stand as a separate entity under community support. These programs undoubtedly serve a much-needed purpose and are very useful to many, but they're not always useful in the case of the cognitively impaired. I've found it takes extra effort on my part to have my husband participate in those programs. He did for four years; he can't any more. He's not able to because of fatigue. But in our case, the benefit was really for my husband, not respite to me as the care giver.

There's much in Bill 173 that should be helpful to clients and care givers, but I noticed no reference to client intervention and assistance or case management and I wonder who will assist me in planning, coordinating and evaluating the services I require. I'm sorry to use "I" so much, but it seems I may even be the client.

Under the purposes of the act, where it says "to promote equitable access to community services through the application of consistent eligibility criteria and uniform rules and procedures," this is essential when it comes to accessing personal and professional services. I hope the eligibility criteria will include clients who are cognitively impaired. The frail elderly, there's a lot of stress there, and I think the cognitively impaired are different and their needs are different and the care givers' needs are different, dealing with them. I've found it very difficult at times to prove my need and occasionally I've been asked why I need help. It's because my husband looks well, he's content, he's comfortable in his own home and he may respond appropriately to a simple question.

The 24-hour day and seven-day week is a formidable challenge to a care giver. It's fraught with responsibility, decision-making and often demanding physical work. The emotional and financial drain can be substantial, and much depends on the attitudes of personnel who plan, deliver and evaluate the care for the client and his or her family. It is possible to care for a loved one at home with backup from caring, supportive personnel who truly believe in keeping a client in their home in order to prevent institutionalization.

Mrs O'Neill: Thank you very much, Mrs Lawrason, for coming. There haven't been many front-line care givers such as yourself who have been able to present just what's happening there today.

You bring back many memories to me personally in the care of my father, who died in 1993. I am very pleased that you brought forward to people the occupations that helped me immensely and seem to be very much in your basket of supports as well: social workers and occupational therapists. I had never had anything to do with either set of professionals before.

I think you and others who came today, although you more specifically and first hand, are concerned that maybe the professional care part of Bill 173 is left very much in the nebulous realm. We don't know what professionals will be included and whether certain professions will be much more available through certain MSAs than in others, and how much the ministerial approval will be needed for each of the professions as they come on board.

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Respite care, you certainly made a case and I'm very pleased that you were as specific as you were. It's certainly helpful to have that kind of knowledge on this committee.

You brought forward something that I think most people who haven't had your experience, indeed a little bit of mine, don't realize: just how difficult it is to first of all diagnose and then come to grips with the psychogeriatric care or the cognitive inability or incapacity of a loved one, because in many cases they can, for maybe an hour or even an evening, "get up" for an occasion, and then that certainly leaves very quickly and may not return for a considerable length of time.

We've had quite a few people express to us that they are quite concerned about that area of care as well, because there is no indication in Bill 173 about mental illness and psychogeriatric care. Will it come at the bottom of the list in the provision of services in MSAs? I don't know.

I think that your presentation has made an impact on all of us. It certainly has on me. I really don't have questions for you. I just want to congratulate you, in your busy and demanding and compassionate role, for taking the time to come and share your firsthand experiences with us.

Mrs Lawrason: Thank you.

The Chair: Thank you very much. I know what Ms O'Neill has said would convey the feelings of all the committee members. One of the things in hearings such as ours, to have individuals come forward, it is sometimes more difficult to ensure that happens, and so we really appreciate the perspective that you've brought of both caring for your husband and how you organized that and being able to see a real-life story in terms of the whole area of long-term care.

ADVOCACY CENTRE FOR THE ELDERLY

The Chair: I call upon the representative for the Advocacy Centre for the Elderly. Welcome to the committee.

Mr George Monticone: My name is George Monticone. I'm with the Advocacy Centre for the Elderly. The advocacy centre is a legal clinic for low-income seniors that's funded by the Ontario legal aid plan. We've been in operation now since 1984.

ACE strongly supports the purposes of Bill 173 as they're set out in section 1. In particular, we support the efforts to ensure that a wide range of community services is available to people in their own homes and other non-institutional settings. We also support the effort to improve the quality of community services and to promote the health and wellbeing of persons requiring these services, many of whom will, of course, be elderly persons.

There are many complex economic and administrative issues in connection with Bill 173. In our capacity as a legal clinic, we really are only placed to discuss with you in a meaningful way certain aspects of consumers' interaction with community-based services. We only hear from people experiencing difficulties, so our comments to you today are based primarily upon our experience with seniors who have had a problem with community-based service.

Before I begin, I would emphasize that every day in this province, hundreds if not thousands of people are assisted in their homes by a vast array of services, from visiting nurses to Meals on Wheels, from attendant care workers to homemakers. The fact that so much of this goes on each day without complaints and without anyone calling us is a testament to the dedication and skill of the many women and men, both paid and volunteer, who are responsible for delivering the services to the community. However, my task today is a less happy one of asking you to turn your attention to the minority of cases where all may not be well and to ask you to consider our recommendations.

The most common kind of complaint we at ACE hear is that the quality of service is not what it should be. Nearly all those who make this complaint to us have modest expectations about quality, but even these modest expectations sometimes are not fulfilled. Many such complaints are heard from seniors who have contacted ACE about something else initially.

Just as some examples, we hear complaints ranging from, "My kitchen isn't cleaned properly," or "They don't understand the kind of food that I normally eat," to "Every time somebody shows up at my door to assist me, something of mine goes missing," and there are complaints about workers showing up late or leaving early and not giving them the requisite amount of time.

These kinds of issues, which I will label quality issues, are extremely important for a number of reasons. Not only are they important because we hear so many of those kinds of complaints, I think they're important because one has to reflect on the nature of these services and realize just how intrusive and personal they are. They're delivered in someone's home, usually out of sight of the public or anyone other than the service provider and the recipient of service. Also, if this were a free market, a dissatisfied customer could simply go elsewhere, but that's not the case. MSAs will be, in many locales, the only option and it's important that this option be of the highest quality.

Because it's an avowed goal of this reform to achieve high quality, and for the reasons just mentioned, ACE is making three recommendations in this area.

First of all, we would ask you to consider including in the bill of rights the right to make a written complaint to an MSA and the right to a timely written response to the substance of that complaint. I think this will help ensure that complaints of this nature are taken seriously, that they're not treated like suggestion box complaints, where someone puts a complaint in a box and it disappears.

A second recommendation is that the quality management system that's required by section 24 should include periodic reviews of all complaints concerning the quality of services.

Thirdly, we would ask you to consider requiring MSAs to provide an alternate dispute resolution mechanism to deal with the more serious complaints about quality, where this could include something like a referral to an ombudsperson.

We don't have specific recommendations as to what this mechanism should be. We wouldn't even insist that the legislation set out a specific mechanism, but perhaps do no more than to require MSAs to have a mechanism available.

Finally, with respect to quality, to get to the heart of the problem, there's a need for good education and training and decent pay for workers to ensure that they're inspired and able to provide the best-quality service.

A second major source of complaints that we hear about has to do with eligibility. Again I have three recommendations in this area.

First of all, Bill 173 has 42 regulation-making provisions. We believe that too many issues of vital interest to consumers are left to these regulations and therefore will not be the subject of public debate. So we are recommending that Bill 173 deal itself with the issue of eligibility criteria and some of these other issues; in particular, issues about fees, if fees are to be charged, issues concerning limitations on services, termination of services and issues regarding waiting lists. Without knowing any more about these matters than we do right at the moment, consumers don't know what they're supporting or rejecting in supporting or rejecting Bill 173.

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Second, with respect to eligibility, we would ask you to consider an amendment to the bill guaranteeing the status quo if someone is appealing a decision regarding termination or change of service. Section 32 of the bill allows for appeals of decisions regarding eligibility or a change in a care plan or a decision regarding termination. That's very good. We support that. But we believe that a person who undertakes such an appeal should continue to receive the services they have been receiving until the appeal is decided, and there's no provision for that in the bill.

Finally, with respect to eligibility, there's a problem regarding termination of services which is so serious we feel that it needs some addressing. Imagine yourself as an individual receiving services from an MSA and your health is declining and you gradually need more and more services. Finally, you're told that you're at the limit, that there is a limit as to how many services can be provided and you've reached that. In fact, you've maybe gone beyond that. Now, in the past it's been known that service providers would at that point say to the client that they are no longer eligible for any services because they require more than it is possible to give them. This, needless to say, precipitates a crisis.

I've dealt personally with clients who, in that situation, are willing to accept the limit and are willing to accept the risk that goes along with not receiving enough service. In those situations we believe it should be possible for that client to receive the service up to the maximum even though they are at risk, assuming that they are willing to accept that risk. We think Bill 173 should be amended to provide for that possibility.

Finally, we're concerned about the bill of rights found in Bill 173. We support the concept of it, but we believe there's no real legal right without a remedy; that if the bill of rights is really giving rights to consumers, there must be a way of enforcing it. Unfortunately, there doesn't appear to be, despite the fact that the bill of rights is deemed to be part of a contract between the service provider and the recipient of services.

We believe that in order to give the consumer some real power, he or she must be able to take an infringement of the bill of rights to the Health Services Appeal Board and that the board must have authority to order the service provider to comply with the bill and/or award damages for infringement, similar to what we find in the Human Rights Code.

One final comment, having to do with the abuse of vulnerable adults: MSA workers will become aware of the unfortunate fact that some people they are providing services to are victims of abuse, and because of their vulnerability, often due to physical illness or infirmity, these people will not be able to deal with the abuse effectively. What should the worker do? The answers are not always easy. It takes patience and sensitivity to deal with these types of problems. The wishes of the vulnerable person must be respected, but steps can be taken to assist people who want assistance.

Therefore, we would recommend that MSAs be required to train workers having substantial contact with clients to enable them to assist abused vulnerable adults who want assistance and to assist them in a respectful and sensitive manner.

Mr Jim Wilson: Thank you for your submission indeed. I very much like your definition or parameters surrounding the term "quality." I want to ask you what percentage of complaints that you would hear in your experience stem from not enough money in the system versus the percentage of complaints that are directly tied to a quality issue as you define the term. Just give us a rough outline of your experience.

Mr Monticone: I suspect that's a loaded question.

Mr Jim Wilson: It isn't.

Mr Monticone: Not enough money in the system --

Mr Jim Wilson: Your quality definition to me is a little different from going to you and saying, "I couldn't get X-Y service." We went through this on advocacy. We often used to complain, "That's fine, but if the advocate then goes to the administrator of a home or something and says, `Mrs Jones wants this,' and the administrator says, `I haven't got any money for that'" -- do you know what I mean?

Mr Monticone: I would say that far more complaints that we receive have to do with quality than have to do with ability to access the service. But I would hasten to add that I don't know whether anything can be taken from it. The quality issues often, as I have mentioned, come up in the context where a client has contacted us regarding something else entirely and we discover that yes, they're receiving home care or some home services and it comes out that there's a problem with that service. I wouldn't think that one could draw any particular conclusions from that at all.

Mr Jim Wilson: I have to deal with these things as an MPP too and I do draw conclusions on whether it's something wrong in a particular agency, that the workers are unhappy and therefore not necessarily providing the service, or the administrator's a real SOB and that's why the thing isn't being provided, or the fact of the matter is the agency's hands are tied by a higher level, and that is, there's just no money or there is no bed or there is no service available. That's why I asked the question. It wasn't loaded; it's just that I wanted to know what your experience was versus mine.

I want to ask you a supplementary about the bill of rights. You make a very good point that's been made frequently, that the model in the bill right now is a deemed contract, and that certainly isn't clear in reading the legislation. I think of how people would remedy an infringement of the bill of rights. Now you're suggesting that the appeal board's powers be expanded to alleviate the infringement or suggest a remedy. I'm just wondering how strongly you feel about that. You're a good person to ask. You're a lawyer and you're in the business, I think, of ensuring that people's rights are upheld, so help me out here.

Mr Monticone: I'd say we feel quite strongly about that. It was a matter that we have dealt with in a different context. As many of you undoubtedly know, there's a bill of rights associated with the Nursing Homes Act. We made the argument when that was introduced that there should be an enforcement mechanism. There isn't. It's still useful to have that bill. People do take these matters seriously because it's there in the legislation, and it's useful for us when we're arguing on behalf of a client in a nursing home to be able to say, "Well, it says in the bill of rights...." I don't think the choice here is no bill of rights or a bill of rights fully enforceable. There is this middle ground.

Having said that, we would certainly prefer to see something more enforceable. I doubt whether there would be very many cases at all that would involve a hearing at a tribunal. In the nature of these kinds of matters, I don't think things would go that far, but it may help a good deal in solving problems that arise that there is that possibility, that it exists and the service provider knows that this person could take that matter to a hearing. That would assist us a great deal. I think we would solve virtually every problem with that as the background.

The Chair: Thank you very much for coming before the committee with that particular perspective. It's very helpful.

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UNITED WAY OF PEEL REGION

The Chair: I call upon the representatives from the United Way of Peel Region. I want to thank you for coming over today to appear before the committee.

Mr Rav Grover: Thank you, Mr Beer, and thank you members of the committee. I am Rav Grover, president of the board of directors for the United Way of Peel Region, and with me today are Roy Spooner, executive director, and Sally Pincock, United Way agency staff.

The United Way of Peel Region is a not-for-profit agency which serves the municipalities of Caledon, Brampton and Mississauga, located west of Toronto. We currently provide $4.6 million, which we raise in the community, to 45 agencies providing health and social services to Peel residents. Fourteen of our funded agencies, with a total allocation from the United Way of $1.1 million, will be impacted by proposed changes to the long-term care service system. Their clients will be affected as well.

The region of Peel, with a population of 784,000, is the second-largest region in Ontario and is experiencing huge population growth. The population is projected to surpass one million by the year 2011. Peel is a major reception area for newcomers to Canada, making it extremely diverse culturally, racially and linguistically. Seniors and persons with disabilities are a rapidly growing group in the region. As a result of this growth, the expansion of long-term care services, both community-based and institutional, is an urgent need. These services in Peel must be accessible to consumers in terms of geography, language and cultural appropriateness.

The objectives of the legislation as described in Bill 173 are not new ones. Community-based, consumer-focused, accountable, accessible services currently exist in the community agencies providing long-term care services. These same criteria are integral parts of the United Way's agency review process to ensure donor dollars are well spent in Peel.

It is, however, important that United Way maintain a separate decision-making process about its allocation so that it can fulfil its stewardship obligations to its donors. Therefore, the board passed the following motion in December 1993:

"That the United Way of Peel Region reserves the right to re-examine, in consultation with member agencies, the agency funding levels in light of any changes in finances or services due to long-term care reform."

The board also wrote to the Honourable Ruth Grier, Minister of Health, on January 5, 1994, informing her of the motion, and I quote from our letter:

"...expressing great concern that the guidelines appears to eliminate the option of the MSA choosing a brokerage model, as opposed to a direct service delivery model. This is a fundamental issue. We urge you to allow the local long-term care advisory committees to have autonomy to choose the most effective model for local conditions."

United Way of Peel is participating actively in the long-term care planning process in Peel and is participating as one of six selected sites across the province in the United Ways of Ontario direct service volunteer research project. Our goal is to work with the community to develop the long-term care service system which will best serve the residents of Peel.

The United Way of Peel Region strongly supports the broad goals of the reform as described in Bill 173, particularly local, community-controlled planning through district health councils. We do, however, have several concerns about the draft legislation which we will share with you today. We have brought copies of our position paper for each of you, which I believe you all have.

Our first concern is, Bill 173 provides a cookie-cutter approach to service delivery. The draft legislation assumes that the MSA's integrated model of service delivery is the best answer, indeed the only answer, to improving long-term care service delivery. It requires that the MSA be the major, if not sole, service provider. This is not an acceptable approach from our viewpoint. We challenge this assumption and ask the minister to provide for us and indeed for all Ontarians the research and evaluative data which support integrated service delivery in any sector as a proven method for improving service for consumers.

We suggest that there is no conclusive data and that the establishment of MSAs as described in draft legislation may not result in better services for seniors and people with disabilities.

The MSA model is so prescriptive in its approach that it undermines the potential for sound planning by local communities. District health councils were given the lead role in the planning for improved service delivery while containing administrative costs, but the draft legislation precludes local planning from having an impact on the local model of service delivery.

The Peel District Health Council, with the help of community partners like United Way, has developed and is proceeding with a comprehensive local planning process. We are gathering information from relevant sources about the existing system in Peel, what is working and what is not. Broad community input will continue to be solicited at appropriate times in the planning process. Predetermining the outcome of effective local planning by legislating the MSA model as the end result is subverting the development of a local system which will truly serve consumers better in our community.

Integrated service delivery and the MSA model, as described in Bill 173, represent a drastic change from the service coordination agency described in the government's consultation document in 1992. In Peel, there was widespread support for one-stop access for consumers and for enhanced service coordination. Both of these goals are strongly supported by the United Way of Peel Region. However, major restructuring of independent agencies to create new service delivery agencies was not a recommendation of Peel residents. Therefore, we recommend that the legislation be amended to allow more flexibility in the model of service delivery as determined by local planning.

A second concern is that in addition to objecting to the mandated MSA design, we are concerned about the 20% budgetary limit on purchased services. We question how this figure was determined and what the implications are if MSAs have reached the 20% limit at the end of the four-year period as set out in the legislation. Therefore, we recommend that the 20% limit on purchased services be removed from Bill 173 and that more flexibility be delegated to local communities in this area.

Our third concern is that the MSA described in Bill 173 will eliminate choice for long-term care consumers. MSAs, which will be heavily regulated, will be the only affordable provider of most long-term care services. We acknowledge that consumers with complaints may access an appeal process, but we fear that lengthy delays in service may result. We are concerned that a monopoly on service delivery may minimize the MSA's attention to quality assurance and customer satisfaction.

In Peel, we currently have a system where different service providers can be accessed through home care or directly by consumers. We see this as managed competition which results in high-quality services and customer satisfaction and will assure communities of high-quality, cost-effective care. Therefore, we recommend that a system of managed competition is the best option for consumers.

Our fourth concern: We are concerned that the MSA will create an unnecessary bureaucracy and that the implementation of such a radical restructuring will be costly to Ontario taxpayers. We are not aware of any cost benefit analysis to support the notion that cost savings will achieved through streamlining administration, other than the one we acknowledged in the newspaper this morning.

The United Way of Peel Region is knowledgeable about many of the agencies providing long-term care services, due to our thorough agency review process. We know that most community services are currently delivered in an effective and cost-efficient manner. We also believe that our local planning process is intent on achieving efficiencies where it is feasible. A costly restructuring of the entire system is not, in our opinion, the best way to achieve economies. We recommend, therefore, that a cost-benefit analysis of the impact of Bill 173 be carried out by the government and be made available to the citizens of Ontario before this legislation becomes law.

Our fifth concern: We are concerned that the funding envelope described in Bill 173 may result in an actual cap on service availability. From the outset, United Way of Peel Region has recognized that a reformed long-term care system will only be successful if adequate funding to provide an acceptable level of service is provided. The Fair Share For Peel Task Force and the region of Peel have identified a significant underfunding of services for seniors, and indeed all citizens of Peel. It would be impossible for services in Peel to fulfil the obligation of the legislation with current funding. An integrated service delivery model may put at risk the significant funding that existing agencies currently raise independently to support long-term care services.

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Bill 173 presents an uncertain approach to funding and potentially puts the MSAs in the untenable position of being required to deliver certain services with no guaranteed funding. The proposed legislation says that the MSA "shall" provide services whereas the minister "may" provide financial assistance. The legislation does not put the same onus of responsibility on the government as it does on the MSA.

Therefore, we recommend that adequate funding for an acceptable level of service be a priority for any reform to long-term care community services and that the language of the bill reflect the province's obligation to fully fund mandated services.

Our sixth concern: MSAs may result in consumers waiting longer for community services than is the case today. Consumers' needs for long-term care services must be met as quickly as possible. A client-focused system would place the highest priority possible on prompt and appropriate response. This is a strong value for the United Way in determining which services will receive funding. It must not be endangered by unnecessary red tape and paperwork.

In a previous presentation to this committee, a Peel geriatrician expressed her concern about a lengthy assessment tool under development by the ministry. Currently, with one phone call, a physician can initiate in-home service for an elderly patient within 24 hours. Can we be sure that the MSA will maintain the same timely response to consumers' needs?

Therefore, our recommendation is that the legislation be amended to reflect the highest priority for prompt and appropriate response to consumers' service needs.

Our seventh concern: The legislation must respect the major role played by direct service volunteers in the existing long-term care system. According to a survey of long-term care service providers in Peel conducted by the long-term care advisory committee, there are approximately 2,700 volunteers currently working with Peel agencies to provide long-term care services, administration support, fund-raising or governance.

At United Way, we have a long history of volunteerism. We know from experience that individuals usually volunteer for an organization because they identify closely with the mission and culture of a particular agency. MSAs, as described in Bill 173, will be heavily regulated by government. If MSAs are perceived to be government-controlled bureaucracies, retaining and recruiting committed volunteers will present a huge challenge for the system.

In Peel, as we grow, we urgently need to expand and enhance volunteer services for seniors and people with disabilities. We cannot afford to risk the erosion of this force which is so vital to the current system.

The report from the United Ways of Ontario direct service volunteer research project will be helpful to the ministry in understanding the issues for volunteers working in MSAs. We recommend that the ministry give particular attention to the retention and recruitment of direct service volunteers in the long-term care system.

Our eighth concern: The United Way of Peel Region supports the goal of Bill 173 in achieving easier access to long-term care service for consumers. We believe that a system with one-phone-number access to an up-to-date, comprehensive information database is highly desirable and is achievable in a cost-effective manner through the use of modern technology. We question why the government's work on such an information system is just beginning now. We suggest that an effective and comprehensive information system could achieve improved access for consumers much more quickly and economically than drastic restructuring and the creation of MSAs as described in Bill 173.

We recommend that an effective and comprehensive computerized system be recognized as an essential component of improving access in services for seniors and people with disabilities.

Our ninth concern: United Way of Peel Region supports the composition of MSA boards of directors as described in Bill 173. We question, however, how these boards will be formed and how they will be evaluated. Will boards be elected, and if so, by whom? How will the minister evaluate boards to ensure that they truly reflect communities they serve and that they have appropriate input from consumers? Undoubtedly, some of these questions will be clearer after the regulations are written. We suggest that these issues are critical to the success of an MSA, and we recommend that the legislation specify that the governance of the MSA be clearly accountable to its community.

In summary, the United Way of Peel Region recommends that communities be allowed to pursue their local planning processes and they be empowered to develop effective, efficient, client-centred services which are most appropriate for local conditions. We urge you to amend the legislation to allow for the option of service coordination in addition to service integration.

Thank you very much for allowing us to present today. We sincerely hope that you will give serious consideration to our concerns and our recommendations for amendments to Bill 173.

Ms Carter: Thank you very much. I wish you had been here this morning, when we had a presentation from the Senior Citizens' Consumer Alliance for Long-Term Care Reform. There is an article in the Star today which summarizes what they are saying. Of course you are asking for a cost-benefit analysis, and this is exactly what this group has done. They employed Price Waterhouse, which decided that moving to a system of one-stop shopping would save millions of dollars in administration costs and also shows that the integration that we're looking at under Bill 173, as opposed to a brokerage model, is going to be much more efficient and a cost saving.

It says, "About 30% of the cost of providing services to seniors such as Meals on Wheels, home nursing and homemaking is spent on administration.

"But if those single-service agencies were amalgamated into `multiservice' agencies, each run by one management team, administrative overhead could be cut in half to about 16%, the study, by accounting firm Price Waterhouse, shows.

"As a result, the money that goes toward direct service to seniors could be increased by almost 26%, to $439 million from $347 million, according to the study."

I just wonder what your comments on that are.

Mr Grover: We became aware of that article and that study this morning as well. Based on our preliminary research that we then conducted on our own figures through our own agencies that we fund through the United Way, we determined that total administration costs on the four package agencies were $518,000; total budgets of $6,984,000, which represents a 7.4% admin cost. So that led us to be a little sceptical of the figures that Price Waterhouse is quoting. We would love to see that study and have it available for use.

What I further want to add to that is that if I go to my business background, I can see from the way the business environment works that a monopoly is never the most efficient and effective way of delivering goods; managed competition always seems to drive other agencies to compete with each other to be more effective than any other agency to compete for dollars. That leads us to believe that managed competition is a much better approach than monopoly.

Ms Carter: I must say that I personally have a profound philosophical disagreement with you there. I think that is fine when it comes to providing goods and other things, but I think for essentials like health care and education, we need something much more -- "dedicated" I think is the word.

But certainly you're talking, as we all are, about efficient and integrated service, and this group is saying, and I agree with them, that when you have everything integrated and one access point and everybody is, as it were, communicating closely because they're in the same organization, you are going to end up with more effective and appropriate care.

Mr Grover: I agree. I don't want to argue philosophies either at this point, but when we look at integrated services versus if you want to think of them as specialty shops, my experience has always been that integrated service does not necessarily provide the better route to being able to service customers' needs to their satisfaction. When you deal in specialty shops, for example, if you look at the basket of services provided under an MSA, I don't see how Meals on Wheels is related in any way or can provide any efficiencies when it comes to nursing attendants and so on. So when you're talking about services that are different in that sense, I don't see the cost savings that are achievable on an integrated basis when you try to integrate the two.

Ms Carter: I guess it's at the administrative level that you would have those.

Now, another point you raise is the question of volunteerism, which we've heard a great deal about, and again the Senior Citizens' Consumer Alliance for Long-Term Care Reform, which presented this morning, had something to say on that. Of course nobody knows exactly what's going to happen as far as this goes, but they see no reason why the system we're now looking at would not in fact provide more encouragement rather than less for volunteers to come forward, because you do have a community-based organization, it's community driven and, as they put it, you have more services to volunteer for.

Presumably, the main concern of a volunteer is the person they are serving, the clients, the people with whatever problem it is that they're helping to solve. To have a specific label attached to how you're providing that service really doesn't seem to be a very large part of it. So they are certainly suggesting that we could be looking at a plus rather than a minus here.

I believe United Ways are actually meeting with the ministry and district health councils and having forums to make sure that everything is going to be done as this legislation comes into effect to make sure that volunteers remain. We know that it's not going to be an overnight change; it's going to be gradual. So hopefully as these organizations come together the volunteers will be included in that coming together and they will stay with it.

Mr Grover: Can I ask Sally to respond to that question.

Ms Sally Pincock: We are indeed one of the six sites across the province participating in the direct service volunteer research project which the Ministry of Health has funded through United Ways of Ontario; a small bit of funding, but we're managing. We'll have two focus groups in Peel. Our reading of the terms of reference of that project is that we really want to hear the perspective of volunteers who are doing the work. I think it's a very important perspective, and unfortunately it's been somewhat ignored. Although it's mentioned in Bill 173, it's a very brief mention. We are really urging that the minister will take the report out of this research and read it very carefully.

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I can't share your opinion that volunteers are going to be more ready to volunteer. When I look at Peel agencies like Caledon Meals on Wheels -- the most dedicated community volunteers, covering a huge geographic part of the region; they go out there in rain and snow and sleet -- or the Hospice of Peel, where the whole service is provided by trained volunteers to people where there's someone in the family who's dying, I'm not sure how much they want to be part of a larger, much more administrative structure. I think it's a very big issue.

Ms Carter: Well, I see that we're getting rid of administration rather than producing it.

Ms Pincock: Our administration costs in the four agencies where we gathered the information quickly this morning are 7.4% of their total budget. It is not 30%, as the Price Waterhouse study indicated, and it's well below the 16% that MSAs apparently will achieve. I think you need to do a bit more research.

Ms Carter: Just one more point: I just put it to you that the MSAs in many ways will resemble a hospital. If you're talking about monolithic organizations, you're talking about volunteers not being interested and so on, I know certainly in my own community, where we have two hospitals, both enjoy very wide volunteer support. The community interest in them is very high indeed. I think that an MSA is, as I say, similar in many ways, and I see no reason why it wouldn't earn the same kind of support in the community.

Ms Pincock: If I may just respond, I agree with you. Hospitals depend heavily, the three hospitals in Peel certainly, on a very strong volunteer component. I would just suggest to you that volunteers volunteer for different services for different reasons. I'm not sure that I would like to see MSAs quite the same as a hospital, because it has a very institutional appearance. So I'm questioning some of your assumption there.

The Chair: Thank you very much for coming before the committee. I would just note, in case all members didn't, that you also provided us with a response to the Toronto Star article and the article. Just for the record, it is there as well.

ONTARIO COMMUNITY SUPPORT ASSOCIATION, AREA 7, METROPOLITAN TORONTO

The Chair: Could I then call upon the representatives from the Ontario Community Support Association, Area 7, Metropolitan Toronto.

Mr Bau St-Cyr: My name is Bau St-Cyr. I am chair of the Metro chapter of the Ontario Community Support Association, and I'm here today with other representatives from our area executive. Jerry Berman is our vice-chair. Beside Mr Berman is Linda Luste, beside Linda is Catherine Brookman and to my right is Jean Green.

The Ontario Community Support Association is an organization of direct providers of community-based services whose primary purpose is to support, promote and represent the interests of community-based, not-for-profit health and social service agencies across the province.

The following services are provided by our member agencies: Meals on Wheels, congregate dining, home help, homemaking, home maintenance, respite care, intergenerational programs, Alzheimer day programs, senior day programs, friendly visiting, transportation, telephone reassurance, client intervention and assistance, as well as information and referral services.

The Metro Toronto chapter of OCSA, one of 15 chapters in the province, represents over 45 agencies which provide a variety of in-home and community support services for seniors and persons with disabilities. Metro chapter members have been active in a number of initiatives related to long-term care reform, including consultations on policy developments, conducting focus groups on surveys and staffing provincial and local committees. In addition, OCSA members have affiliations with other associations which are also addressing long-term care reform. These networks reflect the different communities to which members belong: geographical, community of interests and/or community of common bond.

We will now discuss the issues related to Bill 173 that are of greatest concern to the members of our area chapter. Jean Green will discuss issue 1.

Ms Jean Green: The absence of mention of the client intervention and assistance program in the legislation is highly problematic. This program, funded by the long-term care division for many years, was pioneered and evolved in Metro Toronto. It is considered a vital component in linking seniors with the systems that provide them with resources, services and opportunities, thus allowing them to remain living as independently as possible in the community.

The program provides intensive case management to persons who have complex needs due to a combination of factors such as physical frailty, mental confusion and minimal supports from family and friends. The program encompasses intake, assessment, service planning, follow-up, support counselling, information and referral, advocacy, documentation, housing and placements, emergency assistance and care giver support.

Client intervention staff work extensively with their clients and are available to assist them in negotiating their way through the system. We cannot overemphasize the importance of the role played by this program in the current scheme of community support in Metro Toronto. To omit this program from the reform would remove a key support element for consumers.

Our recommendation is that a client intervention and assistance type of program be listed as a mandatory in-basket service.

Mr Jerry Berman: Issue 2: We are concerned that currently funded programs find themselves divided in the legislation into homemaking, personal support, community support services and professional support services sections. We feel that this breakdown is unnecessary and will only serve to confuse matters further for the consumer. It is imperative that we seek to eliminate barriers to services and provide more integrated care in order to simplify the delivery system as much as possible. Of course, one of the chief problems with the present system is its confusion to the consumer.

We recommend that the artificial distinctions between services be removed from the legislation.

Recommendation 2: that mandatory and non-mandatory programs be identified through a consultation process which would include the provincial body of the Ontario Community Support Association, and that these services then be listed specifically in the legislation.

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Ms Linda Luste: Issue 3: We are also concerned that most important issues related to the functioning of the MSA will be decided by regulation. We would be distressed to find MSAs become too highly regulated. Presently, community support agencies work through a community development approach and undue rules and regulations would destroy the ability to deal with the unique problems of individuals. We would accept the need for regulations around basic standards, access, provision of the entire basket of services as well as fees, but believe that individual MSAs should develop their own policies and procedures which can then be audited by the government.

Our recommendations would be in this area, that the provincial body of OCSA continue to be invited to have a role in the drafting of regulations, and that individual MSAs be given enough autonomy within the framework laid out by the government to respond to local community needs by developing policies and procedures best suited to their environment.

Mr St-Cyr: I'll deal with issue 4. We're concerned that the role of in-home respite care is very unclear in the legislation. It is included in the definition of care giver support services in subsection 2(1), but is not defined or listed as a separate program area in subsection 2(4).

Respite care is a vital service whose mandate is to provide support and relief to care giving families. The program is complementary to other care giver support programs such as adult day programs and needs to be recognized as a specific program area and funded as such. The aims of the reform can only truly be attained if these types of programs are readily available to families who are providing care giving duties, who are working as care givers 24 hours a day with a service recipient. Thus, our recommendation is that in-home respite care be listed as a mandatory in-basket service.

Ms Catherine Brookman: I'll deal with the fifth and final issue, and that is in relation to the bill of rights, subsection 3(1). It reads at present: "A service provider shall ensure that the following rights of persons receiving community services from the service provider are fully respected and promoted."

We are concerned that the wording of this article does not reflect the essential right of all individuals to access service. The right of an individual related to Bill 173 should commence prior to receiving assistance from the MSA, with the guarantee that the service will be available when and as needed.

With Bill 101 and the emphasis on the deinstitutionalization of our elderly population, let us be sure that the bill of rights guarantees access and availability to community services. We do not want to create a system that enlarges our waiting list while consumers go without needed assistance.

One of the principles of long-term care, as spelled out on page 3 of the Community-Based Services Provided by Multiservice Agencies document, specifies that the reform is intended to respect and support people's desire to be healthy and independent. The bill of rights, in its current form, does not support this principle. Therefore, our recommendation is that the wording of this article be changed to reflect the rights of all individuals to receive services when and as needed.

Mr St-Cyr: We thank you very much for having given us the opportunity to come before you today to discuss these issues and wish you well in your continued efforts at improving Ontario's long-term care system. Of course, we're available for questions.

The Chair: We are now running a little bit ahead of ourselves so there may be the opportunity for more than one question. The next couple of presenters are not here yet.

Mrs O'Neill: I'm pleased that you brought forward the respite care. As you know, we had an individual, Ms Lawrason, this afternoon -- maybe you were here for her presentation -- who first hand explained to us just how important that respite care is to her. We haven't had a lot of that personal witnessing, and you certainly seem to have a sensitivity to that.

I'm going to ask the parliamentary assistant what he can offer as a guarantee to you within Bill 173 that respite care is indeed not forgotten. I, like you, would like to see it more heavily emphasized or highlighted, but maybe there's something he can say that we can get some comfort from.

Mr Wessenger: There certainly is a provision in the definition, I believe in care giver support, that respite care is included in that definition; so it definitely is included in the bill.

Mrs O'Neill: Could you be specific with the section? These people certainly know the bill. If you could be very specific, I think it would be helpful to the presenters.

Mr Wessenger: Subsection 2(4) indicates "care giver support services." Then if you look at the definition of "care giver support services" under subsection 2(1):

"`care giver support services' means counselling, training, visiting and providing information, respite and other assistance to caregivers...."

I understand maybe the concern is that respite is a very broad term and of course it would include both in-home services as well as other alternatives. So it's a broad term. There's certainly the intention that respite would include in-home respite services.

Mr Quirt: Just to add to what Mr Wessenger has said, I think the presenters would agree with me that providing in-home respite to care givers can be done in a number of forms. It may take the form of a volunteer visitor and you may call that your friendly visiting program, but in effect someone may come and visit for a while and allow a care giver to go shopping or go to a movie. Often a homemaker might be a more appropriate worker to send in for respite purposes if there are particular personal care activities that need to be done or if there are particular jobs around the home that need to be looked after. Sometimes if a client's circumstances are complicated from a health perspective, a nurse is the best respite worker to provide.

So we see respite in the new system as a very legitimate and important reason to use all our resources in the multiservice agency and not to limit it to one particular category of worker. If there's a way that we can convey that in a more complete way in the act, we'd be interested in your suggestions on how we might do that.

Mr St-Cyr: One of our concerns is that many of the services that are presently provided in the community sector are listed in the legislation, where a service such as respite care is not. The type of service Mrs Lawrason, the care giver who came earlier, discussed with you is an in-home-type respite care service that is coming in to provide her with a set number of hours of relief every week. That is the type of funded respite care service in Metro Toronto and the one that exists presently. So we're concerned that that type of program doesn't come back specifically listed in the legislation. Although we understand that a large part of the intent of the legislation is to provide support to care givers, we would feel quite a lot more comfortable if that particular program that currently exists and is so effective in relieving families, such as the one of the care giver who was here earlier, was in fact listed in the legislation specifically.

Mrs O'Neill: I want to go to the bill of rights, because that's been brought to us a couple of times as poignantly as you have presented it, and I think you've hit the nail on the head. We have here access but it's access to access, not access to service, and I'm really pleased that you mentioned the waiting lists. We haven't got the guarantees to service built in here. In fact, it makes me quite nervous that waiting lists are given a profile in the legislation, because, not particularly in Metro Toronto but in other areas, particularly small areas, we've been told there really are no waiting lists at the present time and that they do seem to have the complement of staff they need and the combination of staff they need to serve their clients.

So I wondered if you want to say a little bit about how you think that bill of rights could be changed, or am I interpreting what your concerns are correctly, is also important.

Ms Brookman: Thank you for your comments. In terms of the waiting lists, just to speak to that, I think you're correct in suggesting that many agencies do not have waiting lists, and the reason that they don't have waiting lists is because we don't want to give clients false hopes. We don't foresee the availability of resources to service the clients; therefore, we're not putting them on a waiting list for particular services. Therefore, clients once again are out in the community shopping around.

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With respect to long-term care reform and enlarging service, there may be a possibility of putting people on waiting lists, but that would only be possible if in fact we had the resources to accommodate that.

In terms of the bill of rights as it is written right now, it talks about the rights of persons "receiving" the community services, so the person is already in the system. But the difficulty and one of the major rationales for the reform is prior to receiving service. That's what we want to do something about. We want to open up access. We want to let people know where they can go for help. We want to improve the image of the government in terms of long-term care reform and how we care for individuals. That's why we specified that the wording needs to reflect not only the rights of individuals receiving service, but we have to pay attention to the rights of individuals prior to coming into receiving community services.

Mrs O'Neill: Thank you very much for your comments. I found them helpful. I too don't think we should be building unavailable expectations and we shouldn't be using a lot of nice, fuzzy words that really we have to take a leap of faith on. So I'm pleased that you were as specific as you were in the points and your concerns.

Mr Tilson: I'd like to speak to your third issue, which is the issue of regulations and your fear of an overregulated organization or service.

I was interested in the vast number of groups that participate from your member agencies; it's quite an impressive list. I have spoken to some of them, and some of them fear for their existence, in fact, after this legislation, for different reasons. Many groups have come to this committee, and have spoken to members of the Legislature privately, that feel that a balanced home care system would be best provided with private, non-profit organizations as opposed to the type of system that seems to be proposed; that that's the best way to ensure highest levels.

I too agree with your concerns expressed in issue 3, which says that you're really afraid that the whole system's going to become too regulated, too much bureaucracy, that we're going to sink in mounds of paper, most of which no one will understand. Notwithstanding all that I've said, has the government expressed any indication that it would support the recommendations that you've put forward, any members of the government or any members of the ministry?

Mr St-Cyr: It's my belief that the government has mandated the district health councils to set up a community planning process. Our concern around the overregulation of the MSA is twofold.

Mr Tilson: If I could just interrupt you, I'm thinking specifically with the drafting of the regulations, because I agree with you: that's where all the monstrous horror stories are going to occur. I guess my question is, directly, do you feel that the government will allow you to participate in that?

Mr St-Cyr: The legislation is both very specific in some areas, such as a description of homemaking and cleaning services, and very vague in a number of other areas, and that's a bit of a concern. Both of those are concerns.

We understand there are going to be up to 42 regulations that are basically going to put the meat on the skeleton of the MSA. On the one hand, we want to avoid overregulation of the MSA. On the other hand, if we're going to be operating by regulation, we would like the Ontario Community Support Association, a provincial body, involved. Thus far, the process has allowed OCSA to be part, in that our membership is involved in the creation of service standards for a variety of the programs that are going to be offered in the basket of services in the MSA.

Thus far we are involved, and our recommendation basically is that we'd like to continue to be involved. We're concerned about overregulation and we'd like to be in on the setting of the regulation in order to avoid some of the pitfalls. Thus far we've had the in, and we'd like to continue to be part of that process.

Mr Tilson: Let's ask them. Mr Wessenger, are you going to allow the OCSA to continue to be part of the process --

Mr Wessenger: I'll give my assurance we'll continue to involve them in this process, and we're very pleased to have their participation today.

Mr St-Cyr: Thank you. We appreciate that.

Mr Jim Wilson: You can take that to the bank.

Mr Malkowski: Thank you for your presentation today. You mentioned some of the issues, client intervention and assistance and their programs and that they need to be listed within the legislation. May I ask the parliamentary assistant then, do you think that an amendment may be coming forward to see that this kind of service is listed as mandatory?

Mr Wessenger: I'm going to ask the policy person to answer your question, Mr Malkowski. There's no question that these types of client intervention services, which they define as case management services, it is certainly the intention to continue them. I believe they are covered in the legislation, but I'll ask Mr Quirt to give further clarification on that.

Mr Quirt: Clearly, the type of services described, the client intervention and assistance activity that some home support agencies in Metro Toronto are involved in and other agencies are involved in province-wide, is a necessary, important part of the system. We've been funding it for years, so it would be a little silly of us to say it's not a good idea at this point.

Our problem in describing and putting a definition to some of these services is that the wording we use may imply things that others would construe as not beneficial. For example, we've heard presenters before the committee come and tell us how the case management approach of home care is totally inappropriate for the delivery of support services like Meals on Wheels and transportation and friendly visits. So if we were to enshrine case management, we'd have to do it in a way that didn't offend those who were concerned with what's implied with that language.

Clearly, case management -- small c, small m -- is an absolutely necessary part of understanding a client's needs and situation and how best to serve them and doing it quickly. Making the appropriate arrangements in a crisis situation is a really good example of how that can help someone respond to a problem and not become more reliant on the long-term care system in the longer term. If we can describe case management -- small c, small m -- including case management and the client intervention and assistance emergency mode, then it's an expectation of ours. It's how we describe it as a service and where we put it in the legislation.

The same thing applies with respite care. We wouldn't want to have people say, "Oh, I guess I got to send the nurse in and the respite worker" because somebody needs to go shopping. We'll send the nurse in. We achieve our respite objective, and if that's the right worker to provide the respite, that's fine. We want to be sure that we don't confuse the objectives of delivering service with the categories of workers. So in both cases we'd be welcoming recommendations on how we can get that message across without implying an overregulation and overspecification of the system that our presenters have had a difficulty with.

I would take the opportunity to say, if you're comfortable with regulations around standards, access, provision of the entire basket of services as well as charges, I can't think of a category where we'd be interested in a regulation that isn't listed there. So we'd be happy to discuss with you what we shouldn't be regulating and we have the forum available to do that.

Ms Green: I just want to clarify. I think sometimes when we present, it sounds like we're presenting a program. I want to remind everybody that really what we're talking about is a very vulnerable group of people, and they're not easy to serve. I think our fear is that this will just melt into everything else, and if given a choice, these situations won't get dealt with, because they're complex. They're difficult. People are fearful. People are resistant. So I guess what we're urging for is a recognition, because without that name in there or that word in there, then to carry out the functions will be extremely difficult. It will get lost.

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Mr Malkowski: I want to say thank you very much for your very, very valid contribution to our deliberations, and I'm sure with your feedback amendments will be coming forward and we'll see some of this guaranteed.

The Chair: Thank you all very much for coming before the committee this afternoon.

Members of the committee, you will see on your schedule that Mr John Muirhead, the past president of the ALS Society of Ontario, is to come before us. He will. He has had a problem with transportation and has called in. I'm going to suggest that we take a 10-minute recess and reconvene at 4:30.

The committee recessed from 1621 to 1633.

ONTARIO ADVISORY COUNCIL ON MULTICULTURALISM AND CITIZENSHIP
ONTARIO ADVISORY COUNCIL FOR DISABILITY ISSUES
ONTARIO ADVISORY COUNCIL ON SENIOR CITIZENS

The Chair: I'd like to invite the two chairs and one vice-president from the three advisory councils, the Ontario Advisory Council for Disability Issues, the Ontario Advisory Council on Multiculturalism and Citizenship and the Ontario Advisory Council on Senior Citizens. We welcome you all to the committee, and we have a copy of your joint submission. Perhaps I could ask each of you just to introduce yourself for Hansard and for committee members, and then please go ahead with your submission.

Ms Mary Szkambara: My name is Mary Szkambara. I'm the vice-president of the Ontario Advisory Council on Multiculturalism and Citizenship.

Dr Shirley Van Hoof: I'm Dr Shirley Van Hoof, chairman of the Ontario Advisory Council for Disability Issues.

Mr Bill Hughes: I'm Bill Hughes, chairman of the Ontario Advisory Council on Senior Citizens, and glad to be here.

Ms Szkambara: First of all, I would like to express our thanks for the opportunity for us to be able to present our points of view on the long-term care. The three councils have submitted their briefs in previous times, and we're just here to reiterate some of the important aspects of the brief and to present some of the issues which are of concern to us.

We were exceedingly glad to hear that this bill is to be consumer-oriented; it is directed to the consumer. However, upon reading the bill, we found that issues involving the consumer were always placed at the end of the points and we found that more focus, and primary focus, was spent on the function and power of the agencies instead of the consumer.

I feel it's extremely important and it should be stated that the consumer is responsible for planning and revising the service plans, unless of course the consumer is unwilling or not able to do so, and then we have other sources in the government which can guarantee his rights.

We believe that the long-term care should be consumer-oriented, representative of the neighbourhood and community-driven in all aspects, be it in planning the services, prioritizing, quality, monitoring or budget. However, as described in this legislation, it is not, and we are quite concerned, because we feel that as time goes by, the organizations, professionals and special-interest groups might take over the system and we are exceedingly afraid that if there's nobody to be a watchdog or vigilant over the consumer issues, the consumer will be presented with another bureaucratic layer and will have difficulty in attaining any services.

We are exceedingly concerned about the insufficient emphasis that's given to the information so that it can be culturally sensitive and accessible to the ethnocultural community of Toronto. We feel that this information and services must be provided in appropriate language to facilitate the linguistic and cultural makeup of our community.

One of our major concerns that this bill presents is the makeup of the MSAs. According to the bill, the MSAs will be geographically allocated, and in many areas we feel that this might create a problem, especially to our ethnocultural community. We recommend that satellite MSAs be established which would meet the needs of the ethnocultural community, and also any other special needs that might arise.

We feel that if this new system will be in effect, it will create an MSA monopoly of service provisions, and it is inevitable that in spite of efforts to guarantee consumer mechanisms to raise concerns of recommended changes, there will be reluctance to do so because there is no other alternative. We are very, very concerned about the function of the MSAs if there is no other alternative.

We had difficulty in evaluating many components of this bill without the regulations. We feel that regulations must clearly describe and clarify how the process will work, and without the regulations, we find that it's very difficult to evaluate how this process of long-term care will work. When the regulations are going to be made up, we hope the consumer will be consulted. We hope the advisory councils will be consulted. We would like to be involved in all facets in the development of regulations.

Once again, I would like to say that we uphold the principles of Bill 173. We find that there are many good points in it. Our main concern is, we hope that this bill will be consumer-oriented, consumer-directed and that the consumer will be able to understand all facets of this bill, that there will be linguistic translations, that there will be cultural sensitivity to all the issues.

Now I would like to let one of my co-sponsors go on.

Dr Van Hoof: I would like now to comment on the bill in more detail, and we'll take it section by section. Part I, clause 1(c) -- and this is the only one I will quote, because it's of such importance -- talks about, "to recognize the importance of a person's needs and preferences in all aspects of the management and delivery of community services."

Our comment is, this should be the first principle of long-term care and should be placed at the top of the list, bumping the others down. This reinforces and emphasizes the significance of the consumer in the long-term care system. In most of the sections, when you start to talk about consumers, it's at the end of the list of things, it isn't at the beginning, so we would like the order to be changed so the consumer primacy takes preference.

In part II, subsection 2(4), on page 6 of the bill, given the added potential for neglect and abuse of vulnerable people as a result of remaining in the community, perhaps in isolation and dependent on care from families, councils recommend the addition of a number 11 stating, "Services to deal with abuse of vulnerable persons." I think this has been demonstrated in the news and reported by many people, that the vulnerability of persons with disabilities and the elderly are certainly a risky thing, so I think it's important we deal with that in the bill.

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Subsection 2(6) of part II: Council recommends the addition of a number 7, palliative care services, be made available as well, and I'd also like to add a number 8, if I could, which wasn't in there, but respite services I think must be made available, and not only for families taking care of persons with disabilities but for medically fragile children. Children don't seem to be mentioned in here, and that's been one of the disability council's prime focus in the last three years. Medically fragile children I think should have access to services as well.

Subsections 2(4) to (7), pages 6 and 7: There's no indication of whether this listing of services is descriptive or limiting, that is, only these services will be part of long-term care. If this is a definitive list of these services that the long-term care system will provide, then there will be serious problems in trying to ensure that the long-term care system remains current and responsive to the evolving needs of neighbourhood communities as new and other services cannot be provided.

Given the silence of Bill 173 on how fees for service will be determined, it is unclear whether the artificial division of services according to particular categories is for the purpose of determining a fee structure or prioritizing service needs. Either is unacceptable. I think the fees potentially have a very degrading effect on most persons with disabilities and the elderly. It's known widely that persons with disabilities are in the lowest socioeconomic group in the country, so to charge fees to care for them is unheard of, I think. Long-term care legislation must guarantee that the provision of any service that is necessary to help a person stay in their own neighbourhood in their own home is free.

Under the new integrated homemaking program guidelines, a person must be receiving personal support services in order to qualify for homemaking. This restriction must be eliminated. In order to promote independence and "to recognize the importance of a person's needs and preferences in all aspects of the management and delivery of community services," we have to provide the necessary services that will keep the individual out of an institution without tying them to another service.

I want to emphasize again that we must be explicit about fragile children's right to access services supplied by the long-term care program. Flexible funding will allow support for the parents. Otherwise, these children would end up in the hospital, more likely than in an institution, because of the high care needs. They may end up in even intensive care for some of them because of the needs that they have. So fragile children have to be addressed.

The other thing is attendant services must be available, and we would like the care part taken out of attendant care and recognize them for what they are. These are services that are being provided to the person. They must have access to all the services within the long-term care when they are still receiving their attendant services.

I'd like to skip over to page 11 of our brief. In order to promote a wellness model of service delivery and relevance of services to the consumer, the following amendment should be made to subsection 20(1), that the agency provides or arranges a multidisciplinary team of professionals and peer consumers, where peer consumers represent at least 60% of the team, and the team shall assist the person to state their needs only if required.

Then in part VII, clauses 29(4)(b) and (c), a person should always have the ultimate right to have access to any and all personal records in their own plain language and alternative formats, as required. If it is determined that a record may be harmful to an individual, there should be a provision to warn the individual and to provide such counselling and support as may be necessary if he or she decides to view the records.

The council believes that a person's right to access his or her own personal records should be paramount and that this should be guaranteed in all sections of the bill that refer to personal records, sections 23, 29 and 30. The bill reads as if the care giver has a right to be gatekeeper over the personal records and not allow the person to see. That, I think, is wrong and invades the privacy of the person and it really has to be addressed.

The last thing that I'd like to speak about is on page 15, part XI, subsection 56(1). The advisory councils would like to be involved in any discussions concerning the regulations. We firmly believe that full community discussions are required in developing these.

Mary dealt with that very thoroughly. Bill, have you got something to add?

Mr Hughes: I think, coming from the two prior presentations, one of the things I see in here is that we're discussing the need for openness in the system, that it can't be a closed system just at the mercy of specialists and professionals, no matter how well intentioned that is. Just the mention of openness of personal records, it seems to me that is an essential quality that seems to be denied in this system.

We also want to see openness in the way in which business is conducted by district health councils and by the MSAs themselves. These organizations are doing very busy work in the community and I think the community has to be able to see what is going on. So not only shall we want to see the directors of these organizations represent the community and represent consumers, represent seniors, represent people who need support; we want to see what they do being guided and being monitored by seniors in the community. It may become clear in the regulations but it isn't clear in the legislation that that's going to be the case.

The second thing that has been mentioned is that we have submitted three reports on our concerns before. In looking back over them, we find there are several items that we proposed, and I suppose this is inevitable, that weren't picked up in legislation. But it made us wonder to what extent there has been real listening in here, so that is why we're brave enough to kind of add in again some of the items we thought were important at the beginning that either have slipped through the chinks in the netting or it has been decided that they are not important enough.

One of the items would be support in questions of elder abuse. There's a lot of attention being paid to elder abuse these days. A lot of people are involved, the abuser and the victim, and there needs to be some practical way of supporting people who are caught up in this terrible situation.

A second thing that we don't think has been well enough explored in this long-term care has been palliative care, the support of people who are towards the end of their days, and the families and the people who are trying to support these people we will, one of these days, replace and become part of.

The third thing it seems to me that not enough attention is paid to is supportive housing. Surely, if people are going to be moved back into their community, then they need to have someplace to live in and it may not be appropriate to have their own home or to live with their in-laws or children or whatever. I think supportive housing is an issue that really hasn't been faced very well here.

My comments are really that there's still a lot of understanding that we are missing in this, and we hope the regulations will give us a chance to look afresh at some of these things. We certainly support the concept of long-term care, and seniors are very much looking forward to it. Thank you.

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The Chair: Thank you very much. Members of the committee, we have before us the three advisory councils and I am going to permit a question from each of the caucuses. In the normal rotation we would have begun here with the NDP, so what I'm going to do is to begin with Mr Malkowski. I ask members to be, in their usual fashion, short, sharp and succinct in their questions; that way I just think it takes advantage of having representatives from the three councils with us today.

Mr Malkowski: Thank you very much for your presentation. Some of your concerns are similar to the ones I have in terms of the guarantees of supports, when you're talking about access to information and the communication that is necessary to make it accessible and the need to be culturally sensitive when communicating. If the MSAs cannot do that, then I think we could call that communication abuse if there are not the supports that are necessary.

I'm asking the parliamentary assistant if an amendment could be considered to guarantee a level of support services for people who require access to information from the MSAs and to make sure that the DHCs can develop plans that identify ways to remove barriers so that the communication and the information can become more accessible, not only in their planning but also when they are thinking about barrier removal.

Mr Wessenger: I'm going to ask our policy person, Mr Quirt, to indicate how presently matters are communicated, how they intend to be continued and how this information should be made available.

Mr Quirt: We think that the bill doesn't pose a barrier to clients accessing their records in the long-term care system and we went to special lengths to ensure that a care giver or someone arbitrarily, an agency, couldn't withhold that kind of information from a client. If there's a problem with the way we've drafted it, perhaps you can let us know specifically, but we feel that we have achieved that objective of ensuring that clients do have access to their information and to the records.

I think Mr Malkowski's question also related to information generally, and I know Mr Hughes mentioned information from the district health council. My understanding is that the DHC meetings are public meetings, open meetings, and we can certainly inquire as to their process for the distribution of their minutes and so on at the planning committee level and at the DHC level and let you know how one would access the records of those meetings.

Off the top of my head, I'm not sure if they have a distribution list for their minutes or how that works, but I've been present as a guest at their meetings when there have been lots of people in the room listening and taking an interest.

Mr Wessenger: I'm just wondering if I might follow up Mr Malkowski's question to ask the group. In looking to this whole question of accessibility to information, I have somewhat of an interest in that myself, having conducted a large number of hearings with respect to the hospital sector, and certainly in the hospital sector there are now recommended protocols and procedures with respect to openness of information, for instance, open board meetings and so forth. Are you looking at a similar type of level of openness with respect to an MSA equivalent or are you looking for perhaps even a higher standard, to look at perhaps the municipal or school board models for the question of openness and access to information?

Dr Van Hoof: I really think what we want is open -- we call it transparent. We'd like it to be as open as possible so that anyone can get the information they need and to know what is actually happening because for so long, for instance, the district health councils have been almost behind closed doors. I don't think they were closed meetings, but certainly no one was notified as to when they were available and when their meetings were being held etc. It wasn't something that was widely publicized and no one knew how the people got on -- that's still a problem right now, getting people with disabilities and the elderly on district health councils.

Mr Wessenger: I certainly agree with your comments. We have to have a much higher sort of profile as well for these organizations. One of the problems, perhaps, at the moment with such a multiplicity of agencies and so forth is that you don't have the profile with respect to the community. Hopefully, with a higher profile with an MSA, we can develop a much more open and accessible system.

Ms Szkambara: Could I just add to that, if I may? With the district health councils, I find that the ethnocultural communities also are sometimes not included in many of the sessions or don't even know the information of what is going on. So we would really appreciate the fact that ethnocultural communities also be included and given information.

Mrs O'Neill: Thank you so much for coming. I think, Dr Van Hoof, that you presented on Bill 101 in London, if I remember, on a much stormier winter night. I remember that well.

I'm very pleased that you brought forward the statement that the language of this bill is not friendly to the consumer. I like your suggestions. I hope the government will take them to heart. Some of them really do not require a lot of change, maybe only a change of order. I'm pleased that you've reiterated your continuing concerns because they're very important: the elder abuse, the palliative care and the supportive housing. They're not yet in the bill, you're right, and I think the more we hear that, the more chance we have of getting something in the bill on that.

I'm going to ask the parliamentary assistant or the ministry officials if they can give you any comfort in your comments about children. That has come forward before. I'm just wondering if we can get a statement about how this bill affects children. Are they included? We know the school program is involved, but are children generally, particularly children with disabilities, included in this bill and how are they included?

Mr Wessenger: I am going to ask Mr Quirt to respond to that to indicate what areas are covered in this bill.

Mr Quirt: Clearly, children are very much a client group of the home care program currently, as you're aware, and certainly some of the needs of children and their families present the biggest challenge to the home care program across the province in meeting the needs presented and allowing for children to live at home as opposed to living in an institution.

So yes, very much so children continue to be clients of the multiservice agency in the same way that they're clients of the home care program now for visiting professional services, like nursing and physiotherapy and so on. As Ms O'Neill pointed out, we will continue to provide those services to children in a school setting as well.

I might add that the bill will also fund supportive housing. I know Mr Hughes is a proponent of that service model, and we are in the process of adding $40 million to our funding base for supportive housing and this bill will fund approved agencies to deliver those support services in designated apartment settings. It'll fund our existing ones and our new ones. It'll also fund palliative care in the general sense of funding the home care program and the MSAs, to deliver palliative care in the form of visiting nurses and homemakers and professionals, and through this act the $4.8 million in new palliative care training initiatives will be funded as well.

Mrs O'Neill: Could I get a correction on the supportive housing? I'm sorry if I've had a misunderstanding. Is the supportive housing site then a centre attached to a local MSA or is that one of the satellites or how does that work?

Mr Quirt: No. Our preferred model for supportive housing is that we fund a support service agency to deliver a site-specific package of services in a designated apartment setting. That social service agency will continue to be funded separately, directly by the government, not funded through the MSA. The site itself is normally operated by another corporation that's in the rent-geared-to-income landlord business. In other words, we prefer to have the function of landlord delinked from the function of support service providers.

So the agencies now delivering supportive housing supports will be funded under this bill and a number of new ones will be funded under this bill due to the program expansion, but they won't be funded through the MSA.

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Dr Van Hoof: I just want to make a comment about respite care for children. Often it is available only if the family's in crisis, and that's not good enough, because what often will happen then is the children have to go into a hospital rather than a planned respite care or an emergency respite care, in the sense that if the basement flooded or you have a death in the family, the child ends up in hospital while the family copes with the other emergency. Instead of that, it would be much more cost-effective if you had a respite worker able to come in and look after the child and such and also better for the family and the child, if that was available.

The Chair: Thank you very much for coming before the committee this afternoon and for your joint presentation. We appreciate it.

Ms Szkambara: Thank you for the opportunity.

Dr Van Hoof: I hope the complete brief will be reviewed and considered.

The Chair: Yes, it will.

ALS SOCIETY OF ONTARIO

The Chair: Members of the committee, just so people understand how we're proceeding, we will now hear from Mr John Muirhead, who is with the ALS Society of Ontario, and then go to the College of Nurses and finish this afternoon with the Community Occupational Therapists and Associates.

Mr Muirhead, I welcome you to the committee. We're glad that after some transportation problems you have been able to join us.

Mr John Muirhead: Mr Chairman, ladies and gentlemen, first I apologize. In all the years that I've been riding on Wheel-Trans, this is the first breakdown that I have been involved in. I apologize for being late.

The Chair: That's quite all right.

Mr Muirhead: Thank you also to the previous people, the Ontario advisory council, for filling in ahead of time for me.

Thank you for allowing me to talk a little bit about amyotrophic lateral sclerosis, which is known as ALS, and commonly called the Lou Gehrig disease. ALS is a progressive, irreversible disease of the nervous system in which the motor nerves wither and die. Since the movement messages do not reach the destination muscle, the muscles themselves do not become exercised and they in turn become wasted and atrophy. Persons with ALS become more and more disabled, unable to walk, unable to dress or feed themselves, unable to speak and eventually unable to breathe. ALS can strike anyone between the ages of 20 and 90, and the normal prognosis after diagnosis is death within four years.

At the present time the cause of ALS is not known, at the present time there is no known therapy or treatment which will slow, stop or reverse the effects of ALS and at the present time there is no known cure.

ALS is not contagious. While the body wastes away, the mind and mental thought processes are not affected. Thus, the person with ALS knows that he is dying but is powerless to do anything about it. While the voluntary muscles are affected, the involuntary muscles and organs, such as the heart, the bowels, the bladder and so on, are not affected. Similarly, the senses are not affected. Persons with ALS can feel heat, cold and pain.

As persons with ALS become more and more unable to look after themselves, the spouse or other family member becomes the primary care giver. Persons with ALS require more home nursing care than many other disabled people. Persons with ALS require moving on a regular basis to prevent painful cramping. They require suctioning of the throat and lungs quite frequently. Physiotherapy, moving of inoperable joints, must be done on a daily basis to prevent the joints becoming stiff and painful. Because of swallowing difficulties, dietetic services are required on an ongoing basis. Due to the loss of voice, persons with ALS require the services and assistance of a speech pathologist on a continuing basis. Care giving to a person with ALS is a 24-hour, seven-days-a-week, 52-weeks-a-year job.

It is a fact that persons with ALS would rather remain in the home environment than be admitted to hospital. While the home care and homemaker programs are helpful, they do not provide sufficient assistance to prevent the burnout of the family care giver. Care giver burnout requires hospitalization of the person with ALS and thus increased cost and burden on the health care system.

If the family cannot perform as the primary care giver, the only alternative is to place the person with ALS in an acute care hospital. Many hospitals, however, do not want to accept a person with ALS who has deteriorated to the ventilation stage, since this person requires intensive-care-unit nursing on a long-term basis.

The ALS Society of Ontario welcomes the proposed introduction of universal long-term care and the multiservice agencies but urges the committee to recommend to the minister that more in-home assistance is required. Because a person with ALS becomes completely dependent on others, the society urges the committee to recommend to the minister that a diagnosis of amyotrophic lateral sclerosis be considered as a special case and restrictions on the amount of in-home care available to persons with ALS through the home care and other programs be dispensed with. We would recommend that a minimum in-home care of 16 hours per day, every day, be available to those persons with ALS who wish to remain in their home environment.

The society requests the committee to urge the minister to remove all restrictions on the provision of in-home professional services; that is, nursing, physiotherapy, occupational therapy, speech pathology and dietetic aid for persons with ALS. We would further urge the committee to recommend to the minister that all multiservice agencies must provide all services and that no exceptions, as outlined in section 15, be permitted.

Thank you for your attention.

Mr Tilson: Thank you, Mr Muirhead. I've met you several times in the past and it's good seeing you again. I can only tell members of the committee that I sympathize with individuals who have had this disease and what they've gone through, having experienced it personally with my father, who ultimately went into the latter stages of this disease.

I congratulate you on your presentation for, if anything, trying to help people pronounce the words, let alone tell them what the disease is.

I can tell you that having watched my father go through the various stages, all of the things that you're saying, I hope the committee does look at it with respect to this specific disease. If he hadn't had the assistance at his home before he went into a hospital, if he hadn't had the physical therapy care and the speech and language pathology services and the other homemaking services, life would have been unbearable. So I hope the members of the committee will listen to Mr Muirhead's words.

I have one question for you and that is, I would like you to comment on the impact of the multiservice agencies on volunteer groups, which includes different groups that support the ALS. It has been said by a number of groups, particularly the Red Cross and the Kidney Foundation of Canada, that people simply won't volunteer for government agencies, for faceless government bureaucracies.

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I know in my community of Orangeville there is a support group made up of volunteers to assist members of families whose relatives have this disease in how to deal with it. I know that there is a separate organization to educate members of the public in my community and to raise funds. I know that there is a service club, the Optimist club, of which I happen to be a member in Orangeville, that participates in the Cornflower Day to raise funds and that also participates in the baseball fund-raising program. I also know the people who are in these groups, and I know their reaction. It's one thing to volunteer for a group such as ALS, with the emotion and the passion and all of that, but it is quite something else to volunteer for a faceless bureaucratic service.

My question to you is whether the ALS society joins with other groups such as the Red Cross in the fear of the impact on volunteerism, particularly with respect to ALS.

Mr Muirhead: I think that's a very apt comment. We have discussed the problems with the MSAs and allowing volunteers to continue to work for the ALS society. We do not feel that the MSA will wipe out the volunteerism of the charities. We feel that there will still be enough things for the society to do, to look after the support, to provide information, to provide assistance in any way that we can. So while it may be so that people don't want to volunteer for a government agency, we feel that they will continue to volunteer for organizations such as the ALS society.

Mr Tilson: Thank you very much. I hope you continue with your mission telling the people of Ontario all about ALS, because we need to know more about it.

The Chair: Mr Muirhead, that has been most helpful and I think, as Mr Tilson says, this is something that we don't know as much about as we might think.

Mr Muirhead: I'll be glad to come back and educate anybody any time.

The Chair: Okay, I'll keep that in mind. Thank you again.

COLLEGE OF NURSES OF ONTARIO

The Chair: I call on the representatives from the College of Nurses of Ontario please. I want to welcome you, in turn, to the committee.

Ms Anne Coglan: I'm Anne Coglan, the president of the College of Nurses of Ontario, and with me is Margaret Risk, the executive director of the college.

The College of Nurses of Ontario is a statutory body which regulates approximately 110,000 registered nurses and 35,000 registered practical nurses registered in the province. Our mission is to regulate nursing to protect the public interest. We appreciate the opportunity to present our comments on Bill 173, An Act respecting Long-Term Care, to the standing committee on social development.

The College of Nurses' measure for assessing this bill is the extent to which it protects the public right and interest in having safe, ethical and accessible care and services. In this regard, the college supports the purposes of the bill as set out in section 1. We are concerned, however, that the bill as currently drafted contains some significant omissions and flaws that need to be addressed if individuals in need of long-term care and services are to receive safe, effective and ethical care.

We have two broad areas of concern:

First, making sure that client safety is sufficiently protected and that the system's ability to provide quality care is strengthened.

Second, making sure that the long-term care system is steered by consumer choice and need, particularly consumer rights of self-determination.

We also note a number of issues which we believe may hinder effective implementation of the act.

With respect to our first area of concern, the College of Nurses is encouraged by the intent reflected in the bill to recognize the need for quality care. We firmly support those elements of the bill which we believe are in keeping with the principles of safe, effective and ethical care. It is our view, however, that several specific aspects of Bill 173 undermine these principles. These include:

-- The failure of the bill to explicit identify client safety as the first priority.

-- The safety of clients placed on waiting lists.

-- The rules regarding the purchase of services by multiservice agencies.

-- The deferral to discretionary regulations of most of the substantive provisions relating to safe, quality care; for example, client assessment.

The College of Nurses recognizes that the fundamental intent of Bill 173 is to implement the government's long-term care redirection. This is clear from section 1 of the proposed bill, which opens with the commitment to ensure that a wide range of community services is available. The College of Nurses supports this purpose. But there is no analogous commitment to safe, quality care; only that the health and wellbeing of persons requiring services will be promoted.

We submit that the difference between "ensure" and "promote" is not semantic. It appears to be a careful choice of words which communicates an obligation in the first case but only an encouragement in the second case. This seems to be a case of misplaced priorities, which steers the overall thrust of the bill and which is likely to steer the development of the regulations if not corrected. In other words, ensuring a wide range of community services is not beneficial if there is not a similar commitment that these services are safe and effective. The college submits that the bill needs to be strengthened in terms of its commitment to safety and quality of care.

This failure to give appropriate priority to client safety is reflected in subsection 21(2) of the bill, which specifies that if a community service outlined in the client's service plan is not readily available, the client is placed on a waiting list until the service becomes available. Aside from the issue of how or if a holistic assessment of client needs is to be undertaken by the multiservice agency before a referral to an individual service agency occurs, there is no reference to what is to be done to address the needs of these clients during this waiting period, an omission which undermines the importance of the continuum of care and may jeopardize the safety of the client. Every effort must be made to monitor waiting lists to ensure that services are provided in a timely manner.

The proposed service purchase rules outlined in subsection 13(2) are another illustration of the outcome of giving priority to range of service over safety and quality. The bill provides that multiservice agencies cannot spend more than 20% of their budget for the purchase of each of the four elements of community services from independent service providers: community support, homemaking, personal support and professional services.

We understand that the purpose of this provision is to ensure that the multiservice agencies provide the full range of community services. While the College of Nurses supports this goal, stipulated budget allocations fail to acknowledge that the needs of a particular community or group of individuals may not fit neatly into this formula. The flexibility that is provided in the bill with respect to the minister's power to exempt a multiservice agency from this formula relates solely to phased-in implementation of the bill and bears no relationship to any assessment of community needs.

The multiservice agency is a new, untested service delivery system. Greater flexibility is necessary. The College of Nurses believes that if client safety is the priority, this provision should be amended to allow agencies to allocate their budgets for the purchase of any combination of the four groups of services, based on the assessment of local client and community needs.

The College of Nurses appreciates that the approach of the bill is to defer the development of critical safety and quality of care factors such as client assessment, service plan development and revision, and care provider preparation/qualification to the development of the regulations. We believe, however, that these factors are essential to ensuring that safe, quality care is provided and that the relegation of such issues to discretionary regulation-making authority is not sufficient.

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In this regard, the College of Nurses submits that the following principles be incorporated into the act itself rather than left to the regulations: the need for knowledgeable assessment, both initial and ongoing, of the client's service needs; the need for competent and accountable providers of professional services and the articulation of accountability mechanisms for providers who are not regulated; and the need for continuous monitoring of the level of acuity of each client and the associated level of service and care giver requirements.

One means of accomplishing this is to go further than providing a regulation-making authority and require regulations to address these factors. Furthermore, it is the regulations which give the real assurances of safe, quality care. We strongly believe that developing these regulations in partnership with providers and other key stakeholders, therefore, is necessary. We request a formal commitment from the government that regulation development will not occur without full and open consultation with the stakeholders. In particular, we underscore the extensive experience of the College of Nurses in the area of quality care. We will be pleased to participate in this important process.

With respect to our second area of concern, the College of Nurses strongly supports the concept of a client bill of rights as proposed in Bill 173. We believe that such a bill of rights should reflect the client's right to participate in decisions regarding the provision of services and to receive information about every aspect of the service to be provided. This includes having information about the level of education or preparation of the person or persons who will be providing the service.

Paragraph 3(1)4 specifies only that the client has the right to "information about the community services provided to him or her and to be told who will be providing the community services." The message conveyed here does not clearly articulate the client's right to participate in these decisions. This provision does not fully support the principles of consumer empowerment and self-determination. The fact that partnerships between clients and providers enhance the system's effectiveness must be recognized. Involving the client in the development and implementation of service plans maximizes the integration of the kinds of services needed and wanted by the client and client satisfaction.

As we noted at the outset, the College of Nurses' primary concern with respect to Bill 173 turns on the extent to which the bill provides sufficient safeguards to ensure safe, quality care and the protection of consumer choice. As well, however, we have identified a number of provisions in the bill which fail to address some of the practical problems involved in successfully meeting pivotal objectives such as ensuring service accessibility, availability or effective planning.

Subsection 11(1) specifies that multiservice agencies will be authorized to serve within the boundaries of specific geographic areas. The client population of that area will have access only to those services provided by the local multiservice agency. By placing geographical barriers to access, this service delivery approach ignores, to a considerable extent, the possibility that the services needed by certain clients, and in particular by marginalized populations, may not be available at the local multiservice agency. The needs of clients are defined by a range of dimensions, one being culture. It would be more constructive to facilitate client access to needed services from neighbouring multiservice agencies when not available at the local level.

Subsection 12(1) lists the mandatory services to be provided by each multiservice agency. At the same time, district health councils are given authority to identify community-specific service needs. The extent to which a system characterized by scarce resources can adequately fund the range of mandatory services proposed is not clear. Whether each community will have sufficient funding to provide additional services tailored to meet the specific needs of the individual community seems doubtful. Adequate funding is obviously key to the successful implementation of this proposal.

The College of Nurses supports the government's commitment to consumer membership on district health councils. The value added contributions that can be made by experienced service providers, however, must not be overlooked. We urge government to recognize this factor and provide for the inclusion of representatives from the nursing and other health and social service professions in the membership of the councils.

In summary, the College of Nurses of Ontario recommends:

-- That Bill 173 be strengthened in terms of its commitment to safety and quality of care;

-- That every effort be made to ensure that waiting lists are monitored to ensure that services are provided in a timely manner; for example, exceptions to the rules limiting services to a specified geographic area be allowed where client safety is concerned;

-- That multiservice agencies be allowed to allocate their budgets for the purchase of any combination of community support, homemaking, personal support or professional services, based on the assessment of local client and community needs.

-- That the bill require the development of regulations to govern the quality of services and that the regulations address the need for: knowledgeable assessment, both initial and ongoing, of the client's service needs; competent and accountable providers of professional services, and the articulation of accountability mechanisms for such providers who are not regulated; continuous monitoring of the level of acuity of each client and associated level of service and care giver requirements.

-- That the regulations be developed in partnership with care providers and other key stakeholders.

-- That the client bill of rights clearly articulate that the client has a right to participate in decisions regarding the provision of services and to receive information about every aspect of the service to be provided, including the education or preparation of the person or persons who will be providing the service.

-- That the multiservice agency model provide unrestricted access to services.

-- Finally, that service providers be included in the membership of district health councils.

In closing, we again note that the college of nurses has extensive experience in the area of establishing standards relating to the safety and quality of care and that we would be pleased to provide whatever assistance we can in implementing these recommendations.

Ms Carter: Thank you for a thoughtful presentation. I certainly appreciate your concern with the consumer, or the client, which is what hopefully this is all about, that we shall give the best possible service. I hope and believe that some of the questions you've raised are already catered to, that we can bring to your attention the fact that you don't need to have those particular fears. One is, for example, I believe there will be care providers on the board. It's a stipulation that there should be one third at least consumers, maybe more, and some care providers.

You express a concern that because of the geographical boundaries of the agencies, services can't be accessed beyond those limits. I believe that is not the case. For example, if you had somebody with an ethnic background or religious background who needed care that gave them that background, that could be accessed. I think one of the big pluses of the system we're bringing in is that by having this single point of access to somebody who has all the information and can call on all the expertise necessary to find out what that person needs, they will in fact be able to access a suitable care provision that perhaps is outside their local boundary and that they never would have known about in other circumstances.

Perhaps we could have some details on that point.

Mr Wessenger: With respect to this whole question, I noticed your comments about geographic barriers. Let me assure you that certainly it's not the intention in the act to create geographic barriers. You'll note one of the exemptions to purchase of services in the act is purchase by one MSA from another MSA of services. There's no limit on, say, in the Metro Toronto area, one MSA purchasing from another MSA, or even Durham purchasing from Metro Toronto. The idea is to allow that, shall we say, specialization to occur in individual MSAs where that's appropriate.

As we all know, the MSA model is going to be developed by the district health council. I would anticipate that the models that are recommended by the local district health councils, for instance in Metro, will allow the necessary cultural sensitivity and the specialization developed that's necessary to have the system be comprehensive. I'm sure that's going to involve purchase of services by one MSA from another, and that is permitted under the act.

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While I have the opportunity, I might as well just comment on some of your other points. You indicate the importance of involving the client in the development and implementation of service plans. I can assure you that is in the act. It's section 23. It says that the clients shall participate, I believe, fully in the development of the service plan. On your other concern about timeliness, I couldn't agree with you more. Again, I believe it's in the act that once the service plan is developed, there's an actual legal obligation to provide the service in a timely manner. So there's an actual legal obligation to provide the service once the service plan is developed.

I don't know whether there are any other items I should deal with. I believe that pretty well covers the question of waiting lists, participation of the consumer and the purchase of services out-supplied from other multiservice agencies.

Ms Coglan: I would just clarify that our concern about the waiting period was up front, in the initial assessment time. That was something we wanted to point out, that there didn't seem to be a specified period between the request for assistance, assessment, and then provision of service.

Mr Wessenger: Your concern basically, then, is not in the waiting list once a person has a service plan developed, but the concern that people might not have access to developing a service plan in a timely manner?

Ms Coglan: That's right.

Ms Carter: Of course, it would depend on the circumstances. If somebody wants access to Meals on Wheels, hopefully that can happen the next day, whereas if their needs are more complex, it takes some time to fully develop the structure that the person requires, although some things maybe need to be done quickly.

But you did also raise the question of the 20% purchase and so on. We did have a group here earlier today that was talking about seamlessness, how we want to minimize the divisions between the different aspects of care because, after all, these are subtle things and different people need different combinations and gradations.

It's my feeling that by having an integrated multiservice agency rather than accessing outside agencies for specific services and paying, that we are going to develop something that is more flexible, integrated and more able to adapt to the needs of particular clients. I'm just wondering what your feelings on that might be.

Ms Coglan: We certainly couldn't agree with you more. Our concern was that the 20% stipulation may be a barrier to that provision of seamless service and providing services truly based on individual and community need.

The Chair: Thank you.

Ms Carter: Time up?

The Chair: I'm sorry, we have one more presenter and it is getting late. I regret I'm going to have to bring this part to a close, but I want to thank the college for coming before us today.

COMMUNITY OCCUPATIONAL THERAPISTS AND ASSOCIATES

The Chair: I call on the representatives from the Community Occupational Therapists and Associates. I want to welcome you both to the committee.

Ms Mary Horan: My name is Mary Horan and I'm the chair of the board of directors of Community Occupational Therapists and Associates, commonly known in Toronto as COTA. With me is Barbara Quinn, the executive director of the agency. We are very pleased to be given the opportunity to present our views on Bill 173, An Act respecting Long-Term Care.

For those of you who are not familiar with COTA, I'd like to begin by telling you about the organization. We're a not-for-profit Ontario corporation that provides a range of occupational therapy and other rehabilitation services to people in their homes and community in Metro Toronto. We were founded in 1973 in response to the need for home-visiting occupational therapy services. We strive to promote health and function, to prevent dysfunction, to attain goals of independence, and to improve, develop and maintain the quality of life for persons with functional deficits.

We serve people of all ages with functional challenges resulting from a variety of disabilities. Twenty-one years ago, clients numbered 100. Today we have over 7,700 consumers served through a range of programs annually. At any one time, there is in excess of 1,500 seniors, adults with disabilities and people of any age who require health services at home or in school.

We deliver community-based occupational therapy services to clients through a home care program and a series of grant-funded programs. Clients in the home care program receive assessment, rehabilitation, education and consultation services. Examples of our grant-funded programs are listed in the text. These services are provided by over 200 staff and associates, and complemented by more than 500 volunteers.

We have an ongoing interest in long-term redirection, as half of our clients receive services through the home care program. We have actively participated in Ministry of Health and district health council focus groups and consultations, and we are taking part in implementation planning for multiservice agencies in Metro Toronto. Our participation reflects a strong interest and commitment by staff, associates and volunteers to make reform work in practical ways to benefit our clients.

Our response to Bill 173: While we are in strong support of long-term care redirection, we have a number of concerns regarding the proposed legislation. In the remainder of the presentation we will focus on these issues.

First of all, quality of care: The proposed legislation designates occupational therapy as a core professional service. However, the act does not specify what type of worker may provide certain services. According to the compendium on page 18, "This will permit alternative, lower-cost workers to provide services, if the task or procedure is not restricted to a specific scope of practice under the Regulated Health Professions Act."

We believe that professional intervention may be viewed as an expensive option versus a cost-effective approach in the long run. As a result, MSAs may use lower-cost staff for all services except those requiring professionals as stipulated in the Regulated Health Professions Act.

We recognize a role for paraprofessionals in the delivery of community services. We have experience with this at COTA. For example, we use community resource workers to supplement the work of occupational therapists. The therapist provides assessment and ongoing case supervision, while the community resource worker provides skills teaching, linking and monitoring services. We are concerned, however, that lower-cost workers may be used to replace professional service providers in MSAs. We do not believe the use of paraprofessionals in this manner necessarily indicates long-term savings or most appropriate care.

In addition, we expect 15 to 20 MSAs to be established in Metro Toronto. How will quality of care and standards of practice be assured through the decentralization structure being proposed? Moreover, how will clinical support, professional development, evaluation research, and education and training be maintained? We urge the government to establish a regional body in Metro Toronto which will provide these essential supports and ensure consistent standards of care.

Secondly, entitlement: One of the goals of long-term care redirection is to improve consumers' access to community services. In our opinion, access implies more than entry to the system; it also signifies the type and range of services available.

Bill 173 places restrictions that may actually limit consumers' access to in-home services. The proposed legislation allows the Minister of Health to provincially mandate services. Once these services are provincially mandated, will they be universally guaranteed? On what basis and by whom will rationing decisions be made once this entitlement is removed?

Thirdly, voluntarism: Like other organizations, we are concerned that volunteer retention and support may disappear in the transition to the new MSA system. Volunteers are one of the most valuable components of the present community sector. At COTA, for example, volunteers contribute to extending the organization's services beyond the limits of clinical intervention. Therefore, we suggest that the Ministry of Health provide adequate funding and support to recruit, train and retain volunteers.

Fourthly, linkages between all sectors of Ontario's health care system: Many sectors of Ontario's health care system -- for example, acute care, chronic care and mental health -- are currently undergoing reform initiatives. We encourage the government to facilitate planning as well as service delivery linkages between these sectors. Otherwise, clients who require services from more than one sector, such as psychogeriatric consumers, may find themselves without care.

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Ms Barbara Quinn: The organization of services: Decentralization of services implies increased administrative costs for urban centres, particularly Metropolitan Toronto. We reason that cost savings are possible if some administrative functions are centralized. We also believe it will improve coordination of community services across Metro. Examples of this would include things like information systems, payroll and purchasing, education and training, and the delivery of specialized services.

Transitional planning: We recognize the complexity of designing and founding MSAs throughout the province. However, in Metro it means the amalgamation of some 250 community agencies. Consequently, the costs of establishing this MSA infrastructure could be high. Startup costs would include the transitional funds for labour adjustment, retraining, administration, severance, increased unionization, pay equity, and legal and consulting fees.

We recommend that the Ministry of Health issue a statement concerning transitional planning and the costs involved. Organizations such as ours, which continue to provide these services during the transitional phase, need to know what we are facing.

Specialty services: At present there is a constantly increasing demand for rehabilitation services. In addition, there is a shortage of trained rehabilitation service providers. This is evident in waiting lists for rehabilitation programs within Metro as well as throughout the province. At COTA, for example, approximately 500 people are now waiting for services. Accordingly, we are concerned that every MSA will not have the human resources necessary to respond to clients' complex and specialty needs.

We recognize the benefits of providing a range of services at the local level, and support it. However, we also recommend that speciality services be provided on a regional basis. We encourage government to consider alternate models for the provision of these specialty services.

We request a change to subsection 13(2) of the act, which limits purchase of services to 20% of the MSA's approved budget. We believe this change is necessary to enable MSAs to respond to clients' changing demographic, clinical and functional needs, as well as to preserve some consumer choice.

Mental health services: Many consumers with severe mental health problems are currently receiving community services through the home care program for Metropolitan Toronto. At any one point in time, we are servicing 1,000 mental health clients through the home care program. We are concerned that funding for these services could be lost during the transition to MSAs, and as a result these clients could be without care. Therefore, we strongly advocate that the Ministry of Health ensure these services take place, as well as preserve the continuity of care through linkages between the long-term care system and the mental health system.

Children and school support services: School support services for children were not identified as community services in the act. At present, we provide in-home and school support services for children through the home care program. Consequently, we advocate that Bill 173 be amended to include a section protecting in-home and school support services for children.

Ms Horan: In general, then, we are concerned with the prescriptive nature of the act. The Minister of Health has been given extensive discretionary authority over in-home services through regulations to be developed at a future date. This seems to indicate the potential for community services to become directed and controlled. We believe that a great deal of regulation may hinder service delivery in the community sector, where flexibility and responsiveness have historically been key to its success.

We recognize the need for professional standards in regulations throughout the province. However, as Ontario consists of diverse communities, policies for urban centres like Metro Toronto may not be relevant in other areas of the province. Communities require the ability to create agencies that will be sensitive to the needs of their neighbourhood. Therefore, we recommend stakeholders be actively involved in the process of developing regulations.

In conclusion, we believe Bill 173 does much to advance access and coordination of community services for the elderly and disabled. You have heard our concerns. We request the government to consider the following recommendations before the act is implemented and regulations are developed:

-- Establish a regional body for Metro Toronto which will ensure consistent standards of care, as well as provide education, training and clinical support to local MSAs.

-- Guarantee community services which are presently insured.

-- Provide adequate funding and support to recruit, train and retain volunteers.

-- Facilitate planning, as well as service delivery, and linkages between all sectors of Ontario's health care system.

-- Issue a statement concerning transition planning and the costs involved.

-- Amend subsection 13(2) of the act to eliminate the 20% limit on purchase of services.

-- Ensure in-home mental health services, which are now provided through the home care program.

-- Protect in-home and school support services for children.

We urge government for full participation and consultation with stakeholders in the development of regulations and in all stages of implementation planning.

Mrs O'Neill: I want to thank you a lot. Actually, it's really quite uplifting to know that of the last three presenters, two have mentioned children. I'm very pleased you are one of those. I think you have justifiable fears when children are not specifically mentioned in this bill. I think you have justifiable fears regarding mental health not being included in this bill. We've had quite extensive discussions in other locations; I think it was in Hamilton that we discussed this quite openly, and what we have found -- and I may be corrected if there is a correction -- is that they will be an option for the MSA to pick up. That, to me, is very fragile.

I understand, however, that there are joint talks now going on with a couple of branches of government that have jurisdictional mandates in these particular areas of service, and I hope those talks are fruitful, because I really do think mental health cannot be divorced from this long-term care reform or from the MSA, nor can it be left to chance.

You have said something in your brief that I would like to perhaps have you explain a little further and then certainly have the parliamentary assistant or the ministry officials speak to. It's at the bottom of page 3 and the top of page 4. I think it's a very good question. You really are asking, what happens if services are just not there? Who is going to make the decision? Is it the placement coordinator? Is it the governance structure of the MSA? Is it the actual provider? Who is going to make that ultimate decision of whether the service is available, whether the person goes on a waiting list, whether they get one hour a week or half an hour a week?

I think that's a very good question that hasn't been asked very often in this set of hearings. Although the bill seems to be full of rights, seems to be full of access to services, we know that waiting lists are part of the bill as well. So could you tell us, Mr Wessenger, what your reaction to these statements of mine and the statements of the occupational therapists would be?

The Chair: I'll ask the parliamentary assistant to comment on those. He also wanted to just clarify a few points, and then, if you have any questions or comments on his comments to Ms O'Neill's comments, who had responded to your comments, then, as befuddled as we may be at this late hour, we will bring it to an end.

Mr Wessenger: I will make some comments, and as usual I'll ask Mr Quirt to supplement them because he usually can add some items. But first of all, generally with respect to the whole question of provision of services, basically the same services that are now provided will continue to be provided, and that includes your reference with respect to mental health services now provided through the home care program. There's no change there. The same on the second item with respect to in-home and school support services for children; there will be no change. They will continue to be provided under the MSA.

It should be indicated that there's no target group mentioned in the legislation. There are no age barriers with respect to the provision of services. I think that should be made very clear.

In one of your comments, when you said, "community services which are presently insured," I guess it depends what you mean by community services, but certainly community services as I would define them are not an insured service. I'll ask Mr Quirt, I think, to see if there's anything else he thinks he could add to my comments.

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Mr Quirt: Just to follow up on Mr Wessenger's comments about ensuring that in-home mental health services which are now provided through the home care program will continue, we clearly intend to do that, and the programs and services we deliver through home care we described as generic services. In other words, it doesn't matter why you need the long-term care services, whether it's because you have a mental health problem or cancer or diabetes or whatever, we'll send the therapist and the nurses and the homemakers that you require. So that will continue. There is certainly no intention to exclude people who have a psychiatric problem, but of course the home care program is not going to be hiring a bunch of psychiatrists and dealing with the specialized mental health needs of those people. Clearly we are involved in discussing how our long-term care generic supports will complement a reform of mental health that's aimed at shifting some resources from institutional-based services to community-based services.

The same applies to the school program. We are going to do just as much through MSAs for children in school as we do now through the home care program.

On the issue of insured services, there have been two definitions that have been at work, I think, before the committee. One definition of insured service has been whether in fact there will be a charge for the service. I know that's how it's been interpreted some places.

It's our intention not to charge for things like personal care, nursing, therapists, the services of the home maker if somebody requires personal care. But it is our intention to continue to charge for those things that have charges now, things like the charge that's paid by an elderly person when a meal is delivered, three or four dollars for the meal, or the four or five dollars that changes hands between a volunteer driver and a consumer who's been driven to the doctor as a compensation for the volunteer's gas or something like that. There will continue to be charges like that, but there won't be any new charges for health care services like personal care services or nurses or whatever.

The other definition that's been at work is whether in fact the programs are funded under the Ontario Health Insurance Act, and it's been confused, if you like, with the adequacy of funding, because as you're aware, even though things like nursing visits and other professional visits have been in effect funded under the Ontario health insurance plan, home care programs have been attempting to manage their budget through the year with respect to costs for those programs. While the costs of those programs have gone up, the home care programs have not willy-nilly been providing service; they've been making an attempt to match their resources with the clients' needs as they come forward. We have a 60-hour limit on homemaking services, for example. The average client gets I think about 27 hours. So there's an example of how home care programs have attempted to ensure that a wider range of people benefit from the programs and services provided.

If being an insured service was a guarantee of getting more money, then our colleagues in the long-term care facility side of the long-term care reform would disagree strongly, in that the programs that used to be insured, nursing homes, got significantly less money than the programs that weren't.

Those comments are in support of Mr Wessenger's.

The Chair: Any comment?

Mrs O'Neill: I'm still having trouble. I don't think the question on page 4 has been answered. On what basis and by whom will rationing decisions be made?

Mr Tilson: Good for you.

Mr Quirt: I'm sorry if I didn't make that as explicit as I should have. The decisions now as to how much service someone gets when they become eligible for home care, how many nursing visits they get or how many homemaking hours they get, are made by the staff of the home care program. Those decisions would be made by the staff of the multiservice agency, and now and in the future those decisions would be made within the context of eligibility criteria and provincial policy that are in place now and are being refined so that there's more flexibility in how they're applied.

The Chair: Did you have any questions or comments on what has been said?

Ms Quinn: With respect to the rationing issue, I think what concerns us primarily is in the event of some economic shortfalls, which we know we have ongoing difficulty with, how are we in fact going to redistribute these vital services, especially with respect to the health needs? We are seeing increasingly more severely ill, complex care cases in the community. That could well absorb tre mendous resources, increasingly with hospital closures and restructuring. How will those decisions be made, and will many of the elderly, who need community supports, in fact be lacking needed services because the high-end clients are going to drain some of this off? Who and how are all these decision going to be made?

Mr Wessenger: I might just comment on that. We now live in the reality of a managed health care system. We have for some time, and we've had to live within certain funding limitations. I think the MSA, though, is going to provide -- first of all, there is a commitment to provide more money in the long-term care area. In the past the government has provided substantial increases in the area of long-term care, but I think it's suggested with the new MSA model, in a funding envelope for that model there will be more flexibility with respect to the MSA with respect to delivering services to each local community, so it'll provide more flexibility in how these funds are delivered in respect of the needs of that community.

But there will be, obviously, guidelines with respect to priorities, and obviously you'll have to give priorities to the persons who have the greatest need for the services, and the timeliness of service will have to relate again to the priority needs. A system does not work well unless it prioritizes. We have to prioritize, and that will be the job of the MSAs, as it is now the job of, shall we say, the home care case workers. Those same people will be working for the MSA and making many of the same decisions, hopefully with more flexible guidelines.

The Chair: And in terms of prioritizing, the Chair is going to have to prioritize. The committee's in need of its own version of long-term care. I want to thank you both very much for coming before the committee.

Committee members, we will stand adjourned until October 3. We will be meeting on October 3 and 4, beginning at 9 o'clock, and the schedule for those two days should be out next week. With that, the committee stands adjourned until 9 am on Monday, October 3.

The committee adjourned at 1758.