LONG-TERM CARE ACT, 1994 / LOI DE 1994 SUR LES SOINS DE LONGUE DURÉE
ASSOCIATION OF LOCAL OFFICIAL HEALTH AGENCIES
ALZHEIMER ASSOCIATION OF ONTARIO
MUNICIPALITY OF METROPOLITAN TORONTO, HOMES FOR THE AGED DIVISION
ASSOCIATION OF MUNICIPALITIES OF ONTARIO
CANADIAN PENSIONERS CONCERNED, ONTARIO DIVISION
REGISTERED PRACTICAL NURSES ASSOCIATION OF ONTARIO
GOLDEN YEARS ADVISORY COMMITTEE FOR SCHIZOPHRENIA
WAITING WITH CONCERN COMMITTEE
LONDON REGIONAL PSYCHOLOGICAL ASSOCIATION
ASSOCIATION OF ONTARIO PHYSICIANS AND DENTISTS IN PUBLIC SERVICE, LONDON REGION
ONTARIO HOME HEALTH PROFESSIONALS
NURSE PRACTITIONERS ASSOCIATION OF ONTARIO
PARENTS OF TECHNOLOGICALLY DEPENDENT CHILDREN
CONTENTS
Wednesday 24 August 1994
Long-Term Care Act, 1994, Bill 173, Mrs Grier / Loi de 1994 sur les soins de longue durée,
projet de loi 173, Mme Grier
Association of Local Official Health Agencies
Richard Cantin, president
Dr Helena Jaczek, past president
Alzheimer Association of Ontario
Angela Morris, chair, public policy committee and immediate past president
Bernard Leech, member, public policy committee and president, Alzheimer Society of Peel
Susan Kitchener, manager, public policy
United Way of Greater Toronto
Gordon Floyd, member, board of trustees
Municipality of Metropolitan Toronto, homes for the aged division
Dennis Fotinos, chair, Metro Toronto community services and housing committee and Metro Toronto councillor
Sandra Pitters, assistant general manager, homes for the aged division
Association of Municipalities of Ontario
Reg Whynott, vice-president and chair, health and social development committee
Janice Mills, member, health and social development committee
Phil Johnston, member, health and social development committee
Canadian Pensioners Concerned, Ontario Division
Mae Harman, president
Registered Practical Nurses Association of Ontario
Verna Steffler, executive director
Jan Hallett, president-elect
Med-Care Health Services
Mary Jo Dunlop, vice-president and chief operating officer
County of Lambton
Jim Foubister, chair, health and social services committee
Elizabeth Tenhoeve, member, health and social services committee
Golden Years Advisory Committee for Schizophrenia
Martha Jean Noble, chair
Waiting with Concern Committee
Deborah Jazey, chair
Brian Dunne, executive director, Participation House, London area
London Regional Psychological Association
Dr Edward Helmes, member, executive committee
Association of Ontario Physicians and Dentists in Public Service, London region
Dr Rita Rabheru, region representative and AOPDPS vice-president
Dr Kiran Rabheru, member
Ontario Home Health Professionals
Ken Cook, president
Nurse Practitioners Association of Ontario
Margaret Snyder, President-elect
Carolyn Davies, member
Para-Med Health Services
Barbara Heasman, branch manager, Sarnia
Parents of Technologically Dependent Children
Grace La Forest, president
Friendship in Action
Linda Snedden, executive director
STANDING COMMITTEE ON SOCIAL DEVELOPMENT
*Chair / Président: Beer, Charles (York-Mackenzie L)
*Acting Chair / Présidente suppléante: McGuinty, Dalton (Ottawa South/-Sud 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)
*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:
Caplan, Elinor (Oriole L) for Mr McGuinty
Harrington, Margaret H. (Niagara Falls ND) for Mr Hope
Haslam, Karen (Perth ND) for Ms Carter
Jackson, Cameron (Burlington South/-Sud PC) for Mrs Cunningham
Johnson, Paul R. (Prince Edward-Lennox-South Hastings/ Prince Edward-Lennox-Hastings-Sud ND) for Mr Martin
Malkowski, Gary (York East/-Est ND) for Mr Hope
Sullivan, Barbara (Halton Centre L) for Mr Eddy
Wessenger, Paul (Simcoe Centre ND) for Mr Owens
Winninger, David (London South/-Sud ND) for Mr Martin
Also taking part / Autres participants et participantes:
Ministry of Health:
Quirt, Geoff, acting executive director, long-term care division
Wessenger, Paul, parliamentary assistant to the minister
Clerk / Greffier: Arnott, Doug
Staff / Personnel:
Boucher, Joanne, research officer, Legislative Research Service
Gardner, Dr Bob, assistant director, Legislative Research Service
The committee met at 0937 in committee room 1.
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. Welcome to the standing committee on social development. If committee members look a little jet-lagged, it's because we've been in Thunder Bay and Sault Ste Marie and other places the last couple of days. But we're glad to be back in Toronto this morning, and then we're off to London for tonight and tomorrow as we continue with our hearings on long-term care.
ASSOCIATION OF LOCAL OFFICIAL HEALTH AGENCIES
The Chair: Our first witnesses this morning are from the Association of Local Official Health Agencies. Introduce yourselves for the members and for Hansard.
Mr Richard Cantin: My name is Richard Cantin. I'm president of the Association of Local Official Health Agencies, and with me is the past president and the medical officer of health for the region of York, Dr Helena Jaczek; Alex Lampropoulos from the Kingston board of health; and Gordon White, our executive director.
As many of you know from past presentations, the Association of Local Official Health Agencies is the collective voice of and the provincial umbrella organization for the 42 boards of health of Ontario.
Throughout its evolution, ALOHA has remained committed to the purpose of providing a base for program assistance, consensual representation, political advocacy on behalf of boards of health and their communities, and continuing education.
Even before the inception of long-term care programs such as home care and placement coordination, Ontario's public health units were in the forefront of community-based management and programming. However, the present Long-Term Care Act appears to preclude some actions that will better meet the objectives that ALOHA has had over the years which were, we feel, well carried out over the years, and it risks increasing bureaucracy and reducing direct services, relative to available funding.
The goals of our presentation this morning are, first, to convince this committee that boards of health should be considered on an equal basis with other community groups to become the multiservice agencies and, second, to establish justification for piloting multiservice agencies in a few locations before committing the whole province to an untried model. We suggest one rural and one urban site for pilots.
Dr Helena Jaczek: As communities have evolved over the past century, we also believe that so have boards of health. We've had boards of health in this province since the 1830s, and we feel that through the years we've shown continuing responsiveness to our communities.
For the most part, members of boards of health have been elected representatives from their communities. They have been responsible and accountable to those communities in their roles on boards of health.
We feel that this flexibility and adaptation is clearly shown by in fact the wide variety of programs that you will find in any particular individual health unit. What can seem at times to be a somewhat fragmented and puzzling array of services actually, in our view, shows that we have responded well through the years to the needs of our communities. In fact, you may find such a variety of programs funded by a multiple of different sources that sometimes it's hard to see a connection. You'll see services such as community-based mental health, infant development, placement coordination, environmental health and, of course, home care.
As probably most of you are aware, in the mid-1970s it was to boards of health that the province turned to implement home care programs in a very large part across the province in fact, so that now we have 29 of the home care programs administered by boards of health in this province. That is in fact over 75%.
While we acknowledge the government's efforts to produce very much needed change in the area of service delivery in the long-term care arena, we do not see that this need for a change and adaptation to consumer needs in the service area necessarily must lead to a change in governance and management.
In other words, we do acknowledge, and I think many boards of health have shown that they have acknowledged, the desires of consumers for easier access to the system. In my own health unit in York region, we're looking at a 1-800 number for access to multiple community and support services. This initiative was produced through what we call the community agencies in partnership network, eight agencies working together, coming to a decision that there was a need for a centralized 1-800 access number, and we hope to put this in place this fall. There are many other examples of such partnerships with other community agencies across the province.
Mr Cantin: In fact in Ottawa-Carleton, one of the things we did a few years ago was to institute an appeals process in the home care program, and there are more community representatives than there are board of health representatives. I happen to be the only one on that appeal board. The other two are community representatives from agencies representing either old age security recipients or people with special needs.
We also instituted a granting program from the board of health. Again, there's only one representative from the board of health and seven from the community, so we do have a lot of community participation in our programs. Those are just examples.
Where boards of health have had control over their own budgets and over the administration of budgets, they've been noted for their fiscal responsibility. Boards of health have provided high-quality services and met budget limitations resourcefully. They've continued to demonstrate an ability to prioritize and adapt services to meet community needs.
While ministry budgets have included the service of case management as administrative costs in the past, actual conventional administration costs of programs such home care are less than 10%. Thus, by allying with other services in health units, more dollars are available for direct programs.
Not only do health units have the expertise related to managing a large organization, they're actively involved and responsive to communities. They are also one of the few organizations found across the province which requires their CEO to have at least master's level training in public administration, and I say this being an individual who doesn't have a degree. I feel this is important, to have somebody who's got some competence in this field. Many of the medical officers of health have fellowship certification by the College of Physicians and Surgeons as well.
Dr Jaczek: One of the major assets that the health units can bring is a strong evaluation component to any particular program that we run. We look at the epidemiological underpinnings of causation of disease in our communities and obviously we try and design programs to lessen the risk of disease; in fact, to allow people to live at their optimal state of health. We think this is extremely important, even when you're looking at what is classically viewed as a treatment program such as home care.
The consultation that this government did pursue revealed that many, many seniors, many of the people who came out to those consultations wanted a wellness focus. They wanted that the long-term care reform process ensure that there be a health promotion aspect to the program. We feel that this is what we can offer.
The core of our business in public health of course is in fact health promotion, though we offer so many other different programs. But that is what we truly believe, that with broad population-based programs we will see a shift in individuals' health. Health care is the last resort. We bring that perspective to the home care program as well.
A number of health units are in fact teaching health units, some eight of them across the province, again in terms of evaluation and research into the best possible, most cost-effective and service-oriented, resulting in consumer satisfaction types of programs. We feel we have all that to offer as well.
In essence, the nature and tradition of boards of health have showed that they've played a key role in communities, making the bridge between the clinical and community. Boards of health understand population health. They know that it goes beyond the individual, but it does not neglect the needs of the community. It brings understanding from a broad range of perspectives to the solution of community problems in a facilitative way.
Mr Cantin: All but a few of the home care programs in Ontario are currently based in health units; as we've already mentioned, about 75%. Most of the integrated homemaking and placement coordination services, as well as other long-term-care-related community programs, are administered by health units. It is this which forms a logical base upon which to build multiservice agencies of the future, rather than attempting to start over with unforseen problems. The logistics of starting over with whole new organizations, as opposed to building upon what exists, are staggering.
Profound, untested change is rarely in the best interests of the consumer. Radical restructuring and its inherent focus on systems and administration inevitably will detract from patient services and the ability of the organization to be responsive to its board and community. Issues that will consume the time of totally new organizations for many years to come will include development of new structures; staffing, including trying to decide which unions represent what; policies and procedures; renegotiating of union contracts; office leases; organizational and legislative requirements, and the list goes on. In fact, try imagining creating an organization with a budget of $100 million to $150 million overnight. It ain't gonna happen, not without an awful lot of hitches.
The point we're trying to make here too is that representatives of government, be they elected or staff, have consistently stated that health units have done excellent work with the difficult job of implementing programs like home care. Without compelling reasons to the contrary, it's unfortunate that boards of health, which are most able, with relative ease, to move into a program-delivery phase of the MSA, are specifically identified as being considered only after all other options have been exhausted. Proponents of long-term care reform have always placed emphasis on community choice in governance and delivery of service. Subsection 11(3) effectively eliminates the logical choice of the board of health. If the goal is improved service, this cannot be achieved by micromanagement from Queen's Park, and that's what's going to happen.
In summary, the boards of health bring a broad range of experience and expertise to the administration of community-based programming. Their mandate under the Health Protection and Promotion Act is to ensure the effective provision of a range of services to the community. They provide a fundamental and community-based health promotion focus in all their programs. In times of difficult financing -- and we've lived with that in the last few years -- and increased public expectations, there is a strong case to be made for building on strengths rather than trying to start organizations from scratch.
In this context, boards of health should be considered for the development of the future MSAs and legislation should be changed to encourage this. This can be accomplished incrementally, with immediate progress, without the need for either new legislation or attendant costs of creating new structures. Thus, subsection 11(3) should be deleted. We also urge that the new governance model be piloted in one urban and one rural milieu prior to full implementation.
Thank you for your time.
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The Chair: Thanks very much. We'll go right to questions, beginning with Mr O'Connor.
Mr Larry O'Connor (Durham-York): Thank you, Mr Chair. I appreciate that.
First of all, I want to thank you for allowing me the opportunity to address your body back at the conference. I appreciate that. We have heard from health units, and I know that in your deliberations you mentioned health promotion. You've got a lot of work ahead of you with the tobacco legislation, which did receive third reading and --
Mr Cantin: We're happy about that.
Mr O'Connor: -- hopefully will be proclaimed in the near future.
York East actually put together a little brochure that they shared with the committee in dealing with the needs. East York public health unit didn't want to be one of the bodies to deliver or to be the MSA, but still they recognized the needs of seniors.
It's interesting the number that you gave, $150 million for a budget and finding an entity to deliver that service. I think the total for Metro home care alone is around $100 million, and that's going to be divided up. It's not going to be left with one MSA. So it's not the sense that there's going to be all of a sudden somebody out there who's given $100 million or $150 million: "Here's your budget. Go out there and manage it. Go out there and be an MSA." That's not the intention. The intention is to really see the community involved and see some partnershipping within the community.
We've seen a lot of partnershipping. York region's a good example for partnering when we've seen the palliative care proposal come forward, and funding from the government. Again, the quick response. There's some really good partnering that has taken place.
One thing that has been pointed out to us has been the volunteers. As a public health unit, I guess you people are going to say, "Well, that's a government body." People are telling us that an MSA -- and we don't want to be the people in charge of the MSA. We want to allow the community to develop it and evolve it, so we don't feel that it's going to be government-led, something from Queen's Park saying, "This is how you're going to run it all," that approach, other than telling them, "This is the minimum basket of services we expect you to deliver."
How would a public health unit then bring in that volunteer element? We're hearing it repeatedly told to us that people won't volunteer for government.
Mr Cantin: In fact, that volunteer element already exists, and I will point out to you, when Ottawa-Carleton had the meningococcal disease scare two years ago, more than half of the people involved in the inoculations were volunteers from as far away as Kingston. So it's in existence. In many health units, including Alex's in Kingston, he's got an army of volunteers and it's not unusual to see that happen.
Whether it's programs like Meals on Wheels or whatever program is offered in the community, there is a distinct fear that if there is a body which formalizes all the services that are there, there may be a loss to the community by people who say, "Well, now I'm working for the government, so I should get paid for it," whereas there's a loss of that community spirit in what's happening currently. That's been our perception in our area, but we do have a lot of volunteers currently working for something which is locally directed, if you want.
The elected representatives, much like you, get their marching orders from their electorate and they're much more receptive to the overall needs of the community than a representative from the Red Cross might be, for instance. I could see the scenario because it happens in municipalities sometimes when you try to get roads. I can see Red Cross telling United Way, "Well, if you support me on this, I'll support you on that." Then the whole public need gives way to maybe special needs and I'm not sure this would be the effective use of the dollars. I don't know if anybody else has -- Dr Jaczek?
Dr Jaczek: I think what we're recognizing here is that there should be the role of the community decision-making process to proceed. We're just saying we would like to see subsection 11(3) deleted. I think there is a potential for a variety of models in communities. Obviously we're aware in the north. Apparently many home care programs do in fact do direct-service delivery. That's the way they operate because that's the need of that community.
In more urban areas where you have a multiplicity of volunteer agencies, not-for-profit agencies, we would like to see the potential for the community through the DHC process to make a decision as to what makes sense for that community: How much are you going to amalgamate? Or how little are you going to amalgamate? And we would like to see that process continue, allowing obviously where there's a huge volunteer commitment to a particular organization that this voice be heard.
The Chair: I'm afraid I'm going to have to move on just because of time.
Mr Dalton McGuinty (Ottawa South): Thank you very much for your presentation. Richard, a special welcome to you back here at Queen's Park. I'll take the opportunity as well to congratulate you on your ongoing good works in Ottawa-Carleton in respect to promoting health there.
I enjoyed your brief. I think it's very good and it outlines for us the valuable role our boards of health have played in the history of this province in the development and promotion of health care. I recently wrote Richard Schabas, our chief medical officer of health, and I asked him how much of our illness or disease is preventable. He wrote me back and I was astounded. He said that fully 70% of the disease we are treating in this province is preventable.
When you think of the fact that we're spending about $18 billion on health care in this province, it consumes a little over one third of our budget. If we didn't have enough reason before to promote health in this province, to do all we can to prevent disease, surely for economic reasons we have another compelling reason to do so.
I'm going to direct my question to the parliamentary assistant: What is it that we are doing through Bill 173 that will ensure we promote health, that we consider health prevention as a vital component of this revamping of long-term care in the province and what are we doing to capitalize on the existing expertise that's found in our boards of health?
Mr Paul Wessenger (Simcoe Centre): That's a very good question of how this reform fits in with respect to the whole question of health promotion and I think it's based obviously on one premise. First of all, wellness is a very important part of the whole question of long-term care. I think it's important that there be the component of keeping people who are already healthy, seniors for instance, in the community through the senior citizens programs and so forth. I think they're very much an important part.
The other aspect, particularly with respect to the delivery of care -- I think there's a premise that people who are more independent in their lifestyle tend to be healthier. By keeping people in the community longer, I think the impact of that, provided you provide the support services so they can continue to live independently, will keep them healthier in the long run than putting them in institutional care.
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Mr McGuinty: I know you responded to this before, but for the benefit of our witnesses I want to ask this again and allow them an opportunity to respond. What is the policy reason behind the bias against local boards of health serving as MSAs?
Mr Wessenger: There have been concerns raised, first of all, with respect to the question of governance in the sense of how do you ensure a board of health would have a board that represented not only consumers, but also represented people with experience in the health field and also people with experience in the social service field. There's a concern about that aspect.
Secondly, there is some concern about the fact that most boards of health are not charitable corporations and that they would be perceived as a government body as distinct from being perceived as a non-profit or charitable body. I think it's fair to say that there's a concern that perhaps that might have an impact on donations. We'll be hearing later from the United Way, and it will be interesting to ask them that question too, how they would perceive the aspect of making contributions.
Mr McGuinty: I would just like to allow our witnesses an opportunity to respond to that.
Mr Cantin: It's interesting to note that in Ontario only 2% of the health budget goes to promotion of health. When the deputy minister first came to ALOHA back in January, we pointed this out to her. We said: "You know, if you doubled that amount, can you imagine what kind of inroads you'd have on the other part of your health budget, and if you tripled, can you imagine? You might even bring down your health budget to maybe half of what it is today." That's the one point: There's not enough on prevention, and there's too much on trying to solve the problem after it's there.
In terms of governance, who better to represent the community, whether it be special needs or the people who are actually funding the programs, than people who are elected by the population at large? You've got organizations where the best people refuse to serve because they don't have the time. Here you've got bodies where people take the time, have interest, they have no choice but to listen to what people have to say because, as you know, we've got elections this year again, as you face every four or five years. The responsiveness of the politicians around the table or the people that you appoint with consultation with the local authorities -- they are very much responsive.
Some do come from medical backgrounds. On my board of health, for example, I've got two former nurses, I've got two former social workers, I've got planners. I've got people from all walks of life. You don't have to go to a special-interest organization to find those resources; they are in the community. I think they're a better reflection of what's out there in the community.
The Chair: I'm afraid we have to move on. Mr Jackson, the final question.
Mr Cameron Jackson (Burlington South): I was a little shocked to hear that the notion of the perception that this is going to be a government agency, the MSA, is a reason to limit your access to eligibility to it. I was just flipping through the AMO brief because I assumed -- correctly, upon reflection -- that they fully support your position and they will be reinforcing virtually everything you've said.
Mr Cantin: That's without consultation with us, by the way.
Mr Jackson: But good logic is good logic. It bears the test of what's perceived to be right or wrong; it, quite frankly, comes to the forefront.
I guess my frustration is that about five or six years ago the review of social services and municipal relationships was examined by the Ron Book commission. I know that boards of health were examined, along with a whole host of services which are included in the basket of services of an MSA. That report has since died; it's just absolutely disappeared off the face of the earth. But contained within it was a strengthening of this municipal partnership and local decision-making etc.
I guess my question is a pretty obvious one, and you've already responded to it. If ultimately the MSA is going to follow more of a medical model, which we're told it will, it will be a bureaucratic, government-based service, which is what we're being told by everybody. Why, then, should you not be included? If it walks like a duck and it talks like a duck, why shouldn't you be allowed to be a duck too?
Mr Cantin: I guess the short answer to that is we don't understand it either. But the main thing is that most boards of health have shifted to a business approach to running public health in Ontario. We realize there is a bottom line and you've got to meet it, otherwise the whole system collapses. That's one of the fears we have if public boards of health are not allowed to be MSAs; we'll lose track of that and I can only point out to you what happened with the day care system in Ontario now that the not-for-profit bent has caused an awful lot of people to drop their 80 hours a week as owners of a day care centre to becoming the bureaucratic 40 hours a week, no longer carrying a pager. If you've got a plugged toilet, you call a plumber; you don't get a plunger.
The Chair: Thank you very much for coming before the committee this morning. We appreciate it.
ALZHEIMER ASSOCIATION OF ONTARIO
The Chair: I call on our next witnesses, from the Alzheimer Association of Ontario. Committee members have a copy of their brief. Welcome to the committee.
Ms Angela Morris: Good morning. I am Angela Morris, the immediate past president of the Alzheimer Association of Ontario and the association's public policy committee chairman.
Each of us presenting to you this morning has a long experience as family care givers of relatives with Alzheimer's disease. My colleague, Bernard Leech, is president of the Alzheimer Society of Peel and a member of the AAO public policy committee. Susan Kitchener is the manager of the association's public policy.
With your permission we propose to proceed as follows: First we will review our brief with you and then we would be pleased to answer any questions the committee members might have.
People directly affected by Alzheimer's disease constitute the second-largest group of consumers of long-term care services. How well their needs are met will be a fundamental measure of the success or failure of the reform of long-term care.
The Alzheimer Association of Ontario appreciates the opportunity to present its comments on Bill 173, An Act respecting Long-Term Care, to the standing committee on social development. The measures detailed in the bill will have serious repercussions for people with Alzheimer disease and their family care givers. We believe the comments offered in this paper will, if accepted, help ensure that this large group of consumers of long-term care services will be better served by the programs developed by the long-term care planners across the province.
More urgently, it is our view that if some of the amendments we recommend are not adopted, people with Alzheimer disease and related dementias and their family care givers will be put in danger as we move from one system to another.
Because of the magnitude of the issue, in this presentation we will comment only on those parts of the legislation that we believe essential to be amended.
Bill 173 focuses on the community side of long-term care and particularly on multiservice agencies. The recommendations we make are, because of this, centred on the community-side aspects of long-term care.
What is the Alzheimer Association of Ontario and what does it do? The Alzheimer Association of Ontario is a non-profit charitable corporation representing 38 chapters throughout Ontario. Together, Alzheimer chapters have a membership in excess of 6,000 people, most of whom have or have had family members with Alzheimer disease.
The association and its chapters have an operating budget of approximately $7.5 million, with about 27% of the amount currently coming from the provincial government for the delivery of day programs, respite programs and counselling services. As well, chapters operate family support groups, education programs and information services for health care professionals, families and the general public. Many of our community programs are delivered by volunteers who have themselves direct experience with the effects of Alzheimer's disease.
As part of its ongoing dedication to unlocking the secrets of this dreadful disease, the Alzheimer Association of Ontario provides major ongoing financial support to Alzheimer research at the University of Toronto's Centre for Research in Neurodegenerative Diseases. In addition, substantial ongoing funding is granted to studies of the psychosocial aspects of the care of people with Alzheimer disease.
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The Alzheimer association and long-term care: Because long-term care is an issue of such critical importance to the association's constituents, we have undertaken comprehensive consultation among the AAO board and the committee members, chapter volunteers and staff from across Ontario. We have already submitted two major briefs on the subject to the government of Ontario and have made numerous written and oral submissions. The recommendations which follow are the result of more than two years of both internal and external consultation.
The amendments we suggest today reflect the recommendations made in the association's winter 1994 brief titled Proposed MSAs: Implications for People Directly Affected by Alzheimer Disease.
Alzheimer disease and the long-term care service demand: Sheer numbers alone dictate that the major focus of long-term care will be people with Alzheimer disease and family care givers. Current estimates put the number of people in Ontario with Alzheimer disease at approximately 100,000, with the projected increase of 50% over the next decade. Population projections suggest that by the year 2000, even without the changes planned under long-term care redirection, more than half of all people living in long-term care facilities will be people with Alzheimer disease.
As for care in the community, estimates indicate that fully 90% of the people living at home is supplied by family care givers. Clearly, long-term care's commendable goal of maintaining people in the community for as long as possible has huge implications for this other massive group, family care givers of people with Alzheimer disease and related dementias.
As we indicate on our cover sheet, people directly affected by Alzheimer disease -- that is, people with the disease and their family care givers -- will form the second-largest category of users of long-term care services across Ontario. The largest category, we understand, is that broad group of people between 75 years and 85 years of age.
How well people who are directly affected by Alzheimer disease are served will determine the success of the long-term care programs. If the needs of people with the disease and family care givers are not addressed effectively, long-term care redirection would have been a failure.
Mr Bernard Leech: I'll talk about features of the disease and the applicability of long-term care goals.
Before reviewing the appropriateness of the services detailed in Bill 173, we believe it is necessary to examine some of the specific features of Alzheimer disease and the impact on both sufferers and family care givers.
Alzheimer disease is found primarily in older adults. It is, however, most definitely not part of the normal aging process and, as diagnostic methodology improves, it is being diagnosed at earlier and earlier ages. Early diagnosis and recognition of Alzheimer disease shows a growth in the early onset group.
Alzheimer disease is a progressively deteriorating neurological condition with no known cause or cure. It is marked by continued cognitive decline beginning with simple forgetfulness and ending with the inability to eat, to recognize loved ones and to control one's bodily functions. The diagnosis of Alzheimer's disease foreshadows a two- to 15-year lifespan of progressively increasing dependency, usually upon a partner, followed most often by institutionalization and inevitably by death.
Alzheimer disease causes a progressive and irreversible loss of mental function. The loss of mental function includes:
-- Progressive and irreversible memory loss, and here I'll leave out the "progressive and irreversible" and just deal with the deficits;
-- Loss of orientation skills, both of time and location;
-- Loss of visual-spatial skills;
-- Loss of concentration skills and thought disorder;
-- Loss of abstract thinking skills;
-- Loss of decision-making capabilities;
-- Loss of ability to give directions for care;
-- Loss of ability to carry out functions of daily living; for example, bathing, toileting, dressing, cooking and eating;
-- Loss of language skills with eventual inability to communicate or speak;
-- Loss of ability to recognize family, friends and self.
Progressive loss of mental function can result in a progressive loss of physical control, including a major item, incontinence; the tendency to falls; the inability to walk; and eventual inability to function physically at all.
While many conditions may result in some of the deficits listed, only with Alzheimer disease are some or all of them present together, and they are present in irreversible and steady decline. It is this combination that makes Alzheimer disease so unique and the design of services so difficult.
A person with Alzheimer disease must depend on a care giver who can expect the individual to change personality, often becoming aggressive, to wander from home without warning and to lose all decision-making ability. In later stages, care must be given on a 24-hour-day basis.
Family care givers must be prepared to provide eyes, ears, hands and minds for people they love who are irrevocably and steadily deteriorating; people who may not be able to speak coherently, to think, to recognize family members, themselves, other people, places or things; who cannot make judgements or control their own bodies.
The impact of this exhausting responsibility on family members is magnified by the daily trauma of seeing a spouse, parent or relative become a needy stranger. Without assistance and relief, the economic and emotional stresses can destroy individuals and families. Failure to sufficiently support family care givers endangers both the care giver and people with the disease and leads inexorably to institutionalization.
The debilitating effects of Alzheimer disease do not fit into some of the commendable goals of long-term care, in that Alzheimer disease is not preventable; there is no possibility of remission or reaching a plateau; Alzheimer disease is irreversible.
The purpose of care is not rehabilitative but rather to maximize remaining functions and maintain a decent quality of life for as long as possible.
Ms Morris: The benefits of long-term care reform:
Aims of long-term care reform: The Alzheimer association applauds the dual aims of long-term care reform:
(a) To supply consistent and high-quality facility services for those people whose needs cannot be met in the community;
(b) To provide sufficient community and personal supports that will enable people needing long-term care services to live at home for as long as is possible.
The association lauds the attempt to integrate and systematize services that are often duplicated and overlapping; services that may be confusing to access; services which fail to put the consumer of services as the centre of the focus; services which, without reorganization, are increasingly fiscally unsustainable.
The multiservice agency concept: We reiterate our support for the multiservice agency concept with a focus on a consumer-centred one-stop shop, the availability of basic services across Ontario and local design of programs to meet local needs, but our concerns go further.
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The purpose of the act: As Bill 173 now reads, its purposes do not include the provision of support services to those people forming one of the critical cornerstones upon which the laudable movement away from institutionalization is based: the family care giver.
Ninety per cent of care now being supplied in the community is provided by family care givers. Long-term care in the community for people with Alzheimer's disease and related dementias will depend on the ability of family care givers to give assistance for them to remain at home.
Recommendation: Recognizing that family care givers will be an integral part of the foundation upon which long-term care reform will rest, the Alzheimer association recommends that to section 1, purposes of the act, a further purpose be added along the following lines: "to ensure that sufficient services are provided to family care givers in order that they may provide needed care for family members to live in the community with due regard for the health and wellbeing of both the care giver and the person requiring care."
The association was disappointed that the vision expressed throughout the long-term care consultations is not reflected in the legislation. While we commend the inclusion of the bill of rights by which consumers may know what they can expect from providers, we find that the emphasis on the needs of the consumer and the quality of life that marked the consultation papers is missing in the bill. The goal of integrating community and health services appears in the legislation to have given way to a health model of rules and criteria driven by the system rather than the needs of the consumer or even the local community.
Recommendation: Given that the commendable vision articulated in the long-term care consultation papers, of a system which emphasizes consumer need and quality of life, has in large part been lost in the translation to legislation, the Alzheimer Association of Ontario recommends that the standing committee on social development strive to recapture the essence of long-term care reform and that the government of Ontario amend the legislation until it reflects more closely the original vision.
Alzheimer-specific concerns: Multiservice agency boards: The viability of long-term care reform for people with Alzheimer disease and related dementias depends heavily on the ability and willingness of family care givers to provide care which will prevent institutionalization. If people with the disease and family care givers are not to be put at risk, the adequacy of supports to the care givers is critical.
A glaring omission in the bill regarding MSA board membership gives us very deep concern in this area and serious pause about the legislation itself. Not only do we have strong apprehensions about whether sufficient supports will be established; we have grave doubts about the maintenance and monitoring of such supports when MSA decision-making does not require the input of people with direct knowledge of the needs of family care givers.
The bill does require an MSA board membership which reflects the diversity of people whom the board will serve. Considerations listed are gender, age, disability, geographic place of residence and cultural, ethnic, linguistic and spiritual factors. The bill goes on to require representation from persons experienced in the health services field and the social services field.
However, representation from a major and critical group, family care givers, is not required. Without representation from this group, MSA boards will not be well informed about the supports, such as respite care, which are essential to family care givers in preventing premature institutionalization. This is particularly true when issues regarding people directly affected by Alzheimer disease are considered.
Unfortunately, at this stage it is most unlikely that people with Alzheimer disease themselves will be found to provide sustained representation on MSA boards across the province. Without their presence on the boards and without the presence of at least some family care givers, we anticipate misdirected MSA board decision-making of programs affecting people with the disease. Such programs include assessment and placement, as well as the delivery of Alzheimer-specific services.
Additionally, with the budgets for specialized programs being capped, we are concerned that the dollars necessary for essential specialized services for people with Alzheimer disease will be lost in the competing demands for specialized-service dollars.
Our recommendation: Recognizing that multiservice agency boards should reflect diversity of service users, and recognizing that decision-making by such boards should be cognizant of the needs of major long-term care service users, and given that the current legislation does not provide for inclusion on MSA boards of one of the largest groups of long-term care service users, people directly affected by Alzheimer disease, the Alzheimer Association of Ontario recommends that subsection 11(1) be amended to require representation by family care givers of people with Alzheimer disease and related dementias on all MSA boards.
Ms Susan Kitchener: I'll continue with the Alzheimer-specific concerns that the association has.
An additional one, besides the MSA boards, is the limits on programs that we believe are critical to our constituents. Because of the long-term and progressive nature of Alzheimer disease and the specific deficits it causes, the association continues to see difficulties in meeting the needs of people with the disease through generic community-based services such as those detailed in Bill 173. While we recognize that the legislation allows for the provision of specialized programs through MSAs, it is in the provision of these specialized services that we have our strongest reservations.
The capped budgets for specialized services pits the needs of our constituents against those of all other groups. In meeting the admirable goal of consolidation and integration of programs, we are concerned that those services which are essential to family care givers as well as those which are essential to people with Alzheimer disease may be lost among the competing interests of the major consumer groups. This will, we fear, be compounded by both cost containment and misconceptions about suitable services to the extent that our constituents will be put at risk. Not only will the services required by our constituents be competing for part of the capped funding against the interests of different groups; they will be competing against each other. Funding care giver services may mean cutting services critical to people with Alzheimer disease. Providing sufficient funding for care giver services such as family counselling, respite care, friendly visiting, Alzheimer-specific education programs and peer support may mean that essential funding to maintain a specialized day program for people with Alzheimer disease and related dementias can't be provided, and providing funding for one component may be valueless without the other.
We believe that the component which might best serve to sustain people with Alzheimer disease in the community should be removed from this competition. Recommendations as to how this might be done follow.
Our third Alzheimer-specific concern is the generic adult day programs. Of all the services that can be offered to people with Alzheimer disease and related dementias, adult day programs dedicated for them come closest to meeting the goals and principles of long-term care redirection. They are key to maintaining the dignity of people with Alzheimer disease and related dementias and to preserving their independence for the longest time possible.
It is not possible, through integrated day programs, to maximize the remaining abilities of people with Alzheimer disease nor to provide the augmentation that will prolong their independence.
The purpose of these dedicated or specialized day programs is to maximize and prolong the remaining assets of participants. The activation component of such a day program focuses on the personal skills and interests of the participant, and, having identified them, provides the materials, tools and adaptive guidance to encourage the individual to utilize remaining skills. Such programs might include interaction with people with specialized communications and other techniques, prevention of sensory deprivation, amplification of long-term memory and peer support.
It will be clear, from the features of Alzheimer disease which Bernard listed, that the needs of people with the disease differ very greatly from people with, for example, physical disabilities. The steady decline in capability differentiates their needs from most people with other cognitive disabilities. Animosity, resentment and fear on the part of people with other disabilities are very often the result when people in the mid- to later stages of Alzheimer disease are included in integrated programs.
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Activities offered in specialized programs for people with Alzheimer disease recognize such differences. For example, more direct and ongoing attention and stimulation must be provided. Specialized communication techniques are utilized, as is specialized knowledge of altered perceptions that are affecting the person. Acknowledgement is given to the age of the participants when planning programs. The physical environment is of paramount importance, given the tendency of people with Alzheimer disease to dart off suddenly. Provision must be made to handle disruptive and occasionally violent behaviour. Higher staff ratios are required.
Only people in the very early stages of Alzheimer disease will be able to meet the eligibility criteria for integrated programs. For example, the draft eligibility criteria for adult day programs contained in the consultation guidelines recognize the potential conflict in integrating the programs. Criterion 4 requires "that the applicant is appropriately served by the activities of the adult day program," and number 5, "that the applicant can cope with the schedule of the adult program."
Without adult day programs dedicated for them, most people with Alzheimer disease will be excluded from the very support that is essential to remaining in the community. Specialized programs are the only means by which the people with the disease who have no family care givers will be able to put together sufficient hours of assistance that will allow them to continue to live in the community. Additionally, such day programs may enable people with Alzheimer disease and related dementias to continue to live with working partners and other family care givers.
Our recommendations are, and this is a really key area for us, as I'm sure you can gather:
Recognizing the massive numbers of long-term care service users represented by people directly affected by Alzheimer disease whose needs must be met if long-term care reorganization is to succeed; and
Recognizing that without the availability of dedicated or specialized adult day programs, long-term care redirection will be a disaster for many people directly affected by the disease; and
Given the critical importance of such day programs to maximizing the remaining abilities and to prolonging the capacity to live in the community of people with Alzheimer disease and related dementias,
We recommend that subsections 12(1) and 2(4) be expanded and clarified such that adult day programs dedicated for people with Alzheimer disease and related dementias are included in the mandatory programs which must be delivered by multiservice agencies across the province.
Mr Leech: It's my privilege, on behalf of the Alzheimer Association of Ontario, to read our conclusions and concluding comments.
For people with Alzheimer disease to live in the community, dedicated adult day programs may be as critical as is assistance with the activities of daily living to some people with physical disabilities. We cannot urge strongly enough the adoption of our last recommendation. In it, we ask that adult day programs dedicated to people with Alzheimer disease and related dementias be listed in legislation as a mandatory community service. If the legislation is not clarified adequately, regulations must be developed under paragraph 2 of subsection 56(1), such that the large numbers of people needing this service will be covered. Without this change, long-term care as it is being redirected will fail a very large and growing number of precisely the people it is meant to assist.
The reorganization and restructuring of the long-term care system is predicated on the ability of partners, families and friends to provide sufficient care for people to remain at home in the community. If, because of inadequate supports, these people are unable to fulfil those obligations, people who need care will be in real danger.
We find the implications of the contents of Bill 173 and, equally important, what is left out of the bill very disturbing. The bill gives neither legislative recognition of nor provision for the amelioration of stresses that will be imposed on family care givers, most of whom I need hardly remind you are women.
Without recognition in the purposes of the bill that community supports will be needed to assist family care givers in some instances, we have little hope of a successful system. We urge the amendment of the purposes of the bill to add the provision of supports to family care givers. I might add that this is especially important to the early onset group when one spouse may have to go out to work.
We urge the inclusion of family care givers as consumers of long-term care services in the legislation, as they were in the consultation documents. In particular, we urge their inclusion in the "diversity of the persons to be served by the agency," who must be reflected in the composition of multiservice agency boards of directors. This is especially important in the case of Alzheimer disease, where people with a disability cannot presently be expected to sit on the boards for sustained periods of time.
Unfortunately, Ontarians already have an example of the disastrous results that can rise from reform undertaken even with the best of intentions of the government of the day. Like the reform of long-term care, the reform of the mental health system in the early 1970s aimed to keep people out of institutions and in the community. Deinstitutionalization then proceeded without sufficient community supports in place. The results were near catastrophe for the very people whom the reform proposed to serve.
We urge the government to heed the warning of the experience of mental health reform. Our consideration of Bill 173 suggests that, at least for our constituents, we're about to step over the same precipice again, to move to community care with insufficient community supports in place.
The promise of the reform contained in the long-term care consultation documents was exciting. Bright, committed and knowledgeable citizens are working collegially through district health councils and communities right across this province to bring local reform into being. We urge the government not to dilute that bright promise. We urge the adoption of our recommendations to the benefit of the second-largest category of users of long-term care services, people directly affected by Alzheimer disease.
This concludes the presentation of the Alzheimer Association of Ontario. Again, we thank the committee for hearing from us and we are prepared to answer questions or hear your comments.
The Chair: Thank you very much for a very detailed brief. As I think you know, a number of your regional associations have been meeting with the committee as well. We are, as always, tight on time. I will be able to allow one question from each caucus, but one only, and would ask as usual that members keep those questions short and sharp, beginning with Mrs O'Neill.
Mrs Yvonne O'Neill (Ottawa-Rideau): I thank you very much for this brief. You understand Bill 173 and you've studied it. I'm going to use my time to ask the parliamentary assistant, and perhaps the ministry staff, if your concerns about the inclusion of the adult day program are based in reality or can they give us some consolation that they will be included for sure under adult day programs. I understand exactly what you've said about that.
I also want a comment about care givers being left off the multiservice boards. I presume that's an oversight. I presume they, the people who wrote this bill, think that will just happen by chance. I think both of these things are worthy of amendments if the answers we get this morning are not what we hope for. Perhaps I can get a comment from the parliamentary assistant about those two, what I consider, serious concerns.
Mr Wessenger: I'll answer the first with respect to care givers. It's set out in the legislation that the board shall reflect a diversity of persons to be served. Family care givers are definitely persons to be served and they're definitely consumers, so they are to be covered under the consumer aspect of representation.
With respect to the adult care program, I'm going to ask Mr Quirt to reply to that one.
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Mr Geoff Quirt: Just further to Mr Wessenger's comments, I see no reason why an amendment that would clarify that family care givers are indeed consumers in the long-term care system wouldn't be agreeable to all concerned. Secondly, with respect to adult day programs a number of presenters have suggested that those programs, particularly those associated with long-term care facilities, should have the option of staying independent of the multiservice agency and continue to be funded directly by government.
I've indicated to the committee that the minister would be quite prepared to consider such a recommendation and Mr Wessenger's made the same remarks. In those cases it would require perhaps an adjustment to the bill to make sure that the 20% purchase-of-service limit wasn't a barrier to the ongoing development and support of a specialized Alzheimer day program.
Mr Jackson: I'm somewhat encouraged to hear that, but do we have the government's assurance that those amendments will be supported? Because the one that's of greatest concern is, as the point is made in this brief, that the two types of programs pull against each other and will limit access. To the extent that you're prepared to look at exemptions outside of the 20% rule for purchase of service for Alzheimer service, does that include respite services as well as, besides just, the day care program? The care givers' program, by extension, is equally important for the care giver, to give them access to respite. The most vulnerable people who are before us in this legislation are persons afflicted with Alzheimer and their families. Can we get a clarification on that additional point about respite services as well?
Mr Wessenger: Yes. I believe it's clear in the act that respite care for care givers is part of the mandatory services to be provided by the MSAs.
Mr Jackson: That wasn't my question. My question was if it would be subject to the same exemption rules as the delivery of Alzheimer programming for those affected. I'm saying that for an Alzheimer program to be effective in the province of Ontario, it has to deal with the afflicted family member and those family care givers. I mean, we've had testimony and I've had occasion to assist families with Alzheimer patients to use the administrative back door of family breakdown to get a person into a hospital or into a facility as a desperate plea to save the family care giver.
I'm asking if that respite component will also fall into the statement that Mr Quirt just made about the government's willingness to allow the Alzheimer program to exceed or go beyond the 20% restrictive rule. That's the clarification I was seeking, not what's in the bill. I'm familiar with that and so are our deputants.
The Chair: The parliamentary assistant and then we will have to move on.
Mr Wessenger: I think it's clear that, first of all, respite care and facilities are definitely exempt from the bill now. I think the adult day programs are something that is going to be looked at to see what mechanism can provide --
Mr Jackson: The answer's no.
Mr Wessenger: -- the flexibility. That certainly is a commitment --
Mr Jackson: The answer's no.
Mr Wessenger: -- by the minister, to consider the aspect with respect to adult day programs. But as far as respite community care is concerned, that would be part of the no special exemption, as I understand, for that.
Mr O'Connor: I appreciate you coming before the committee. You present a different view than we hear from a number of people.
You mention a cap. There certainly has been a cap in long-term care because the government commitment to long-term care has increased by over 54% into the community. This year it's going to be around $850 million, so the money is definitely going into the community.
You illustrated on page 10 of your brief a really good reason why you need to be part of an MSA: the day programs. You talked about the need for your involvement. I certainly agree that the focus has to be on the consumer. In the special case that you represent, the care giver can best represent the consumer in this.
The question that I have for you is, the first presentation, and I don't know whether you were here for it or not, was from ALOHA, the public health units. They suggested that they can speak for the consumers. I wondered whether or not they could. I think that when we talk about consumers, and in this case family care givers, an elected council member doesn't necessarily know the real needs and concerns of this type of a consumer of the service. I just wondered if you can give me your feelings on it. I think that it's got to be far more representative as far as the consumer is concerned and that this body may not be best equipped to deal with those special influences, as you put it so well on page 10 of your brief.
Ms Kitchener: Thank you for your comments. I of course would rather not comment on the ALOHA brief, but the reason that we continue to be concerned about the MSA boards -- you've put your finger on it -- is that there are two groups of people here who are consumers. One group of people, the care givers, might, through the provisions allowed in the act, by chance get elected occasionally, sporadically, throughout the province to an MSA board, in which case they can bring an understanding of the needs of family care givers.
The second group of people, who would be the primary consumers, the people who are the most vulnerable -- people with Alzheimer disease -- can't sit on the boards. I come from a long consumer background and so I have problems with saying that parents and relatives can represent the consumers. But in this case, at least, the viewpoint -- no, it's not even the viewpoint -- at least the concerns can be brought forward by somebody. We're very concerned that without family care givers of people with Alzheimer disease on every MSA board in the province, we're going to really overlook the needs of both sets of constituents, the two victims: family care givers and people with the disease. So we urge very strongly the amendment to the legislation.
Mr O'Connor: There certainly will be support by the government for an amendment to that section that deals with the family care givers. I appreciate you coming here.
The Chair: We have to move on; I'm afraid we're running a bit late. May I thank you, on behalf of the committee, for your submission.
Ms Kitchener: Thank you very much, committee members. I wonder if we could leave with you a particularly horrific article which I'm sure you've all seen. There are two articles on the effect of stress on both the person and the family care givers.
The Chair: If you would give it to the clerk, we'll have it circulated.
Mrs O'Neill: Mr Chairman, may I reiterate my request regarding the capping and the 10% and 20% and its implementation dates? We're in Toronto today. We have the ministry officials hanging around. I know we haven't got time for a technical briefing in the next week. It's critical that we know, so that we can all be speaking from the same text, what the rules and regulations and implementation dates are for the 10% and 20% capping.
The Chair: We'll direct that and get some answers. Can I just say to committee members, we have a very difficult day today and we are running a bit late, so if we could focus on the task at hand.
UNITED WAY OF GREATER TORONTO
The Chair: I call the representatives from the United Way of Greater Toronto. Welcome to the committee.
Mr Gordon Floyd: My name is Gordon Floyd. I'm a member of the board of trustees of the United Way of Greater Toronto and a member of the government relations committee for the United Ways of Ontario. With me is Liz Mulholland, who manages our government relations programs.
I would like to begin by thanking the committee for this opportunity to share the United Way's response to Bill 173. I'd like to make it clear that today I'm speaking on behalf of the United Way of Greater Toronto. Many of the concerns that I deal with are shared by the United Ways of Ontario, but that organization is still finalizing its position and will come before you later with a written submission.
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For those of you who aren't familiar with the United Way movement, there are two or three paragraphs at the beginning of our brief that deal with it. I'm not going to read them to you. Maybe we'll help with some of your time problem.
This year the United Way of Greater Toronto allocated more than $30 million to 193 agencies serving Metro Toronto. More than $3.25 million of this was allocated to long-term care services. That's over 10% of the total allocations of the United Way. Clearly long-term care reform will have a significant impact, both on the United Way's member agencies and on how we ourselves allocate our funds.
For that reason, a year ago we established a long-term care task force with the dual mandate of assessing the impact of long-term care reform on our agencies that are involved in long-term care and assessing the United Way funding and the implications of long-term care reform for the allocation of United Way dollars.
Since then, we have been involved in the process of long-term care reform at many levels: in consultations with the Ministry of Health and meetings with the Premier's office, in active involvement on committees of the district health council, and in focus groups.
As volunteers, we have dedicated an unprecedented amount of time and energy to this work in recognition of the lasting impact that long-term care reform will have, and the consequent need to ensure that we get it right.
Throughout this process, we have attempted to be constructive, because we recognize the urgent need for reform and that the time for it is now. At the same time, we have expressed significant concerns with some aspects of this policy and, more particularly, with how it is to be implemented. Some of these issues have been addressed effectively by the government and others not so effectively. Still others are awaiting policy development.
We will continue to work as cooperatively as possible to meet the objective we all share, which is enhanced consumer access to more effective and efficient long-term care services. It's in this spirit that the following comments are made.
We understand that Bill 173 is intended as a general legislative framework and that the government is anxious to avoid being overly prescriptive in the body of the act. This has resulted in fundamental questions of policy being left for future development in the form of regulations. As you know, the process of developing regulations is far less public and accessible than the legislative process. We're concerned that we'll be presented with a fait accompli on policy issues that properly require consultation with a broad variety of stakeholders.
I want to emphasize that by consultation we do not mean a quick flurry of meetings over the course of a week or so, but an ongoing process designed to ensure that as much information and expertise as possible can be brought to bear on these extremely complex issues.
We recommend that the working groups assigned to develop regulations and their terms of reference be widely publicized and that they be instructed to regularly inform all interested stakeholders of their progress, and to invite their feedback on policies under development. When they have completed their mandate, the resulting regulations should be released in draft form for a final consultation, with adequate time for stakeholders to properly review them and respond.
We also encourage the working groups to resist making definitive policy decisions where they lack adequate information. We've heard a variety of questionable statistics thrown around throughout this reform process to date. The notorious 40% for administration costs in community-based service providers is only one of those.
The fact is that we lack important data on many important areas of long-term care. As a member of the funding committee that was set up by the Metropolitan Toronto District Health Council, I've got firsthand experience with this. That committee has been disbanded because it had no information to work on. The long-term care office couldn't supply information, the ministry couldn't supply information, basic financial information about the cost of the long-term care system as it exists now, and nobody has any idea of what the cost impacts are going to be as this transition takes place.
The solution is not to proceed on the basis of unsubstantiated assumptions and ballpark guesses. Instead, we need to identify the policy areas where more research is needed or where pilot testing is needed and address them accordingly. This will slow the process, but you cannot build policies that work any other way.
The remainder of my comments concern four specific issues that the United Way has identified as priority concerns: voluntarism, community responsiveness and accountability, funding, and transition. Let me begin with voluntarism.
Volunteer retention and support during transition and under the new system has been cited repeatedly as a significant concern by United Ways and other organizations. Volunteers are an important resource base and are integral to ensuring the continuing availability and quality of services, community support for long-term care services and community accountability.
With the amalgamation of existing agencies, there is unquestionably a risk that some volunteers will be lost in the transition. The extension of the MSA implementation deadline has alleviated this problem to some extent by allowing agencies to better plan and manage the transition. It is none the less a continuing concern. At the same time, we need to ensure that all MSAs provide adequate funding and supports to recruit, train, retain and recognize volunteers.
It's interesting that the planning documents that came out of the Ministry of Health did not originally address the problem of volunteers and the volunteer slippage that we all expect to occur. Because of the protests, I'm pleased that the ministry has, at least as an afterthought, started to deal with this issue.
United Ways of Ontario has recently received funding from the ministry to conduct research on appropriate roles for direct service volunteers in the MSAs and on the administrative supports that will be necessary to ensure their continuing and effective participation in the delivery of long-term care services. We view this as a sign of the government's interest in sustaining voluntarism in the long-term care sector and we look forward to presenting the results of this study to the minister in December.
The next concern I'd like to address is community responsiveness and accountability. This concern is often cited in terms that MSAs will be government-run. Ministry staff have misinterpreted this literally to mean that people think MSAs will be branch offices of the ministry. They're missing the point. What people are saying is that they are concerned that MSAs are going to be too bureaucratic and awash in red tape. A community board by itself is no guarantee that this will not be the case.
There are a number of factors, in our view, that will determine whether or not MSAs ultimately prove to be too bureaucratic. The first of these is size, but only to the degree that decisions can be made faster in an agency with two layers of staff than one with five, and that front-line staff will probably be more involved in decision-making in smaller agencies with fewer layers. That's not to say that all small agencies are models of flexibility and responsiveness -- I'm sure we all know otherwise -- or that all large agencies are bureaucratic. Larger agencies, however, must actively decentralize their decision-making if they want to remain flexible and responsive.
The second and perhaps most determining factor will be the amount of regulation imposed on MSAs by the province. The greater the degree of regulation and standardization, the less decision-making authority MSA boards will have. At the same time, each and every regulation cannot help but add to the administrative burden of the MSA. Implementation, monitoring, reporting, enforcement and evaluation all require staff and volunteer time and labour, which costs money, money that would otherwise be paying for direct services. Clearly, we need some regulation to ensure equitable, consistent and quality services. However, the drive to regulate ultimately must be weighed against its cost in lost services and lost autonomy at the community level.
Given that the goals of this reform are to shift resources from administration to direct services and to make services more responsive to consumers, members of the Legislature should be taking these cost concerns very seriously. In many respects, providing agencies and ultimately MSAs with the resources, information and supports they need to meet the government's policy objectives would be a far more effective approach than prescriptive regulations. Let me cite an example.
When United Way decided to make accessibility one of its funding criteria, it established an anti-racist and multicultural organizational change program to provide information, training and consulting to agencies engaged in improving their accessibility. Over 100 United Way agencies have now gone through this process, most with impressive results. The key to this success was not only in our requirement that agencies be accessible, but that the supports were available to make it happen.
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Metro's ethnoracial communities continue to express concerns about the ability of MSAs to respond adequately to their needs, and the homosexual community affected by AIDS appears to have been virtually absent from the policy process to date. The government must ensure that MSAs are fully accessible. We recommend that it make necessary information, training and supports available to agencies forming MSAs in order to assist them in meeting this objective.
Also on this note, I'd like to raise the issue of the 20% guideline for the purchase of outside services. In our view, this is another impediment to community responsiveness and local accountability in the MSAs. Our recommendation on this is that there not be a hard 20% guideline, that the appropriate level for purchase of outside services would be decided by the DHC in consultation with their local planning committees.
My next point concerns accountability. Bill 173 and much of the government's long-term care policy to date contain a variety of mechanisms to ensure MSA accountability to the government. In the legislation are additional mechanisms which, while not perfect, do point to some level of accountability to consumers. There is nothing beyond the existence of a community board and membership, however, to ensure accountability to the broader community in all of its diversity.
Again, this is an area where the sharing of information and tools could be effective. United Way, in conjunction with its agencies, recently developed an evaluative framework to assist agencies in assessing how well their programs are responding to community priorities and needs. This framework is attached to our brief for your reference, and we would be pleased to discuss it further with any interested ministry officials.
Evaluation can be extremely expensive. We recommend that the government ensure its evaluation framework for MSAs is designed to avoid elaborate and costly processes that divert funds unnecessarily from direct services.
On the question of United Way funding for MSAs, I'd like to clarify that each of Ontario's 45 United Ways is completely autonomous with regard to its membership and allocations decisions. While United Ways do have a provincial association, United Ways of Ontario, it does not make policy decisions of this nature.
Historically, most United Ways have tended to not fund mandated services on the premise that these are the responsibility of the government. That being said, there are exceptions.
The bulk of United Way funds is allocated to member agencies which are regularly reviewed against locally determined criteria to assess their performance and need for United Way dollars. All agencies must be registered charities. Consequently, United Way funding for MSAs in most communities will be contingent on the MSA meeting the local United Way membership criteria and agreeing to comply with membership requirements like a blackout period for fund-raising during the United Way campaign.
Some United Ways may choose instead to negotiate an alternative funding relationship with the MSA due to its distinct nature as the primary service provider of community-based long-term care services, and still other United Ways may choose not to fund the MSAs at all, but to support non-mandated related services that are delivered outside the MSA structure.
In short, there are a range of funding options open to United Ways, and each will make its own decision when the appropriate time comes. I can safely say, however, that United Ways have no intention of withdrawing funding from services to seniors and the disabled, especially since there is substantial risk that many donors who have been supporting agencies that are now going to be absorbed into MSAs will stop contributing. It is simply a question for us of how United Way dollars can most effectively be reallocated under the new system.
With regard to government funding, it's clear to anyone familiar with the long-term care reform policy that one of its primary purposes is to equitably ration services when needs outstrip available funding. The current existence of waiting lists indicates that this is already the case in some service areas. The government, however, has created expectations that service levels will increase dramatically as a result of this reform.
We acknowledge that the government is putting new money into long-term care services to create services in areas where there are none or where too few exist currently. However, no new dollars will be spent on existing services, services which have been inadequately funded for years.
At the same time, ministry officials have indicated to us that many costs, in particular wage costs, are expected to increase. Wage costs are expected to increase an average of 20% over the course of this reform due to the expansion of pay equity and, to a lesser degree, increased unionization. One of the United Way agencies has calculated that its payroll, which is now $3.2 million, will increase by $600,000 per year as a result of the application of pay equity.
Without additional funding, the only way to absorb these costs is to significantly reduce services. We wonder if this part of the policy has been thought through carefully enough and whether the hard decisions about the reduction of services should be left to the DHCs, as is currently the case. We're not attacking pay equity or unionization; we're simply illustrating why we should not be generating false expectations as to what these reforms can and cannot deliver.
This brings me to the subject of transition. We'd like to urge the government to begin addressing some pressing questions arising from the implementation of the new system. We're being asked by agencies how to estimate severance costs for the entire agency as they begin to plan for possible amalgamation or closing down. We understood from the ministry that the province would take responsibility for all severance costs resulting from this reform. Apparently, this information has not been communicated to agencies. Does the government still intend to assume responsibility for these costs? What about other transition costs, such as legal and consulting fees, disposition of agency assets, counselling and adjustment for laid-off employees?
We recommend that the government examine, in consultation with service providers, the range of costs associated with transition to the new system and issue a clear statement as to what costs it will assume and what agencies are to be responsible for.
As well, there should be some examination of the labour relations issues facing agencies as they undertake amalgamation. In the event of an amalgamation, will existing workers simply be inherited by the MSA? Will they have to requalify for their jobs? Will non-unionized workers have the same seniority rights as unionized workers? All of these questions are contributing to growing uncertainty and insecurity among agency staff across the sector. Are these questions all to be resolved at the local level, or will the government be providing some guidance and support? We recommend that the government ensure that agencies have access to the legal, labour relations and human resources expertise they're going to need to manage this complex transition.
In summary, we urge the government to be as consultative as possible in developing the regulations to accompany this legislation. At the same time, we believe that providing agencies with the supports they need to effectively implement the government's policy guidelines can often be more effective than prescriptive regulations. Regulations under consideration should be weighed against their cost in added administration, loss of community responsiveness and dollars diverted from direct service. Evaluation frameworks should be assessed against their potential costs as well.
We encourage the government to avoid creating unrealistic expectations as to what this reform process can ultimately deliver in terms of expanded services, and look forward to clear responses and additional support from the government on the many transition issues that our member agencies and others are confronting.
Thank you once again for this opportunity to share the United Way of Greater Toronto's response to Bill 173. Your consideration of the issues I've raised is greatly appreciated, and we'll be pleased to entertain questions.
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The Chair: Thank you for the submission and also for the attachment you have provided. Again, we're a bit tight on time, but I want to make sure that we get one question at least from each caucus.
Mr Jim Wilson (Simcoe West): Thank you very much for what is an excellent and comprehensive brief. I have a lot of questions I'd like to ask you. In fact, a number of the things that you've brought up are indeed very disturbing.
I'm very concerned that this bill may cause a number of your donors to stop contributing. I'm very concerned about volunteers. I want to know on both of those fronts, given that this government has a habit of not changing legislation in very significant ways after public hearings such as this -- I expect the bill will go through pretty much intact, even though at this point certainly my caucus colleagues and I won't be supporting it because we just think there are too many problems.
A number of the concerns you've raised in I think a very polite way are actually things that cut to the heart of this legislation. I mean, the 80-20 rule is NDP all the way. We're going to introduce an amendment to get rid of it, but I suspect you're going to see some version of it still in there, and a number of these other things too.
So I want to know how we can mitigate the effect on donors and volunteers, any good advice there.
Secondly, I have a question for ministry officials because this is astounding on page 11 when the United Way of Greater Toronto has heard that costs will actually go up as a result of increased unionization and pay equity. Given that this government hasn't provided, as you pointed out earlier in your submission, anything whatsoever to tell this committee or to prove to this committee that there would be savings with the new MSA model and that administrative savings would in fact go to front-line services, certainly what you've said on page 11 flies in the face of the government's own assurances that there would be savings.
So I want a response from the parliamentary assistant: Is this 20% projection in increased costs true, and would you please provide this committee with the actual documentation on the number crunching you've done to date?
Mr Wessenger: I think probably we can ask ministry staff to provide details with respect to the pay equity aspect, but my understanding, and perhaps ministry staff can correct me, is that the 20% aspect is not going to come out of agencies' budgets. I think the point being made here is that pay equity is costing the government as a whole additional moneys, and that means then in the whole perspective that it's moneys that are not available for provision of services in general across the whole --
Mr Jim Wilson: They're saying that as a direct result of this bill, they've heard there will be a 20% increase in costs stemming from pay equity and increased unionization. Do you have something you're not telling this committee?
The Chair: Just to be clear here, Mr Wilson, perhaps we could just ask the deputants, to make sure we understand what your understanding is on the 20% so the parliamentary assistant can answer that.
Mr Floyd: Our understanding is that there will be a 20% increase in compensation costs across the board arising as a result of primarily pay equity, and also increased unionization. I cited the example of the one agency where they have done the arithmetic and it does work out to about 20% based on pay equity.
Interjection: Is that right?
Mr Jim Wilson: That's astounding.
Mr Wessenger: I'll ask ministry staff to clarify, but my understanding in principle is that pay equity costs are picked up primarily through increased payments generally and will not come out of the particular agencies' budgets. But I'll ask if I'm correct in that.
Mr Quirt: The ministry has not calculated the cost of pay equity for workers in the community service system because that process is ongoing. As various workers benefit from the pay equity legislation, costs can vary depending on the community and the workers through which the value of their jobs is measured.
Pay equity costs of course would be incurred as a result of paying workers closer to what their job is worth, whether there was an MSA or not, and even before pay equity a number of governments have made efforts to improve the wages of homemakers in the province. So pay equity costs have not been calculated specifically.
As Mr Wessenger has indicated, there is additional support available to cover pay equity costs recognized government-wide, and those costs would have happened when workers had an opportunity to have their jobs re-evaluated, whether they worked for an MSA or worked for the agencies they're with now.
The Chair: Thank you. Ms Haslam.
Mr Jim Wilson: Could I have the first part of my question answered?
The Chair: I'm sorry. Yes.
Mr Jim Wilson: How can we now in this legislation minimize the effect of it on your donors and volunteers?
Mr Floyd: I think that both of those concerns, about a dropoff in donors and a dropoff in volunteers, are related very much to the perception and the belief that MSAs will be much less community-based than the existing system and the existing agencies. People who give money to a local Meals on Wheels or any kind of local agency now feel some sense of belonging to that agency and feel some sense of that agency as part of their community. That's why they support it, either as donors or as volunteers.
I think anything that can be done in this legislation, and we've referred to some specific measures, to ensure that the MSAs are as community-based and as community accountable as possible will go a long way to protecting the donor base that now exists and the volunteer base that now exists.
Mrs Karen Haslam (Perth): I'll make my questions as short and as succinct as the other two. It's always a pleasure to have Mr Wilson on the committee. We've worked together before. He always brings such a joie de vivre to a committee.
I was going to talk to you about the community responsiveness and accountability, because I agree, I think in the legislation we have to be sure people see an MSA -- and that's what I see in this legislation -- as being more accountable to consumers. When we have local boards responsible, we have more accountability not only to consumers but to the members of the board, and that board must be accountable to their members, to the consumers and to government, and so I agree with that.
But I disagree with you about the loss of volunteers. I see other areas where government funds and the volunteers and the fund-raising are still there. I look at hospitals that are supported by government and have many volunteers. I look at seniors' homes that receive funding from government and maintain a very active and very good base of volunteers. I look at the education system, which people would see as a large bureaucracy or a government-funded entity. Volunteers are very active and very prevalent in those.
When we can take 1,000 fragmented agencies and streamline them to one board that is more accountable, and that's what I'd like to see, more accountability to the consumers, which is what somebody just mentioned before us, more accountability, I see that as being beneficial. I'm not sure that you would lose your ability to fund-raise, and by designating and still having certain programs within an MSA, like Meals on Wheels and like homemakers' programs -- for instance, when I donate to the United Way, I can pick off where my money goes. Wouldn't that avenue still be open, or would you be changing the type of programs you support and not allowing me to say, "I want to support the Meals on Wheels; I want to support the homemaking"?
Mr Floyd: I don't think we'd be changing on that score at all.
I think your example of education and hospitals is an interesting one. In my real life, when I'm not a United Way volunteer, I'm director of public affairs at the Canadian Centre for Philanthropy. We recently released a study a few months ago about the charitable sector, which, as you know, includes hospitals and educational institutions. It was a profile of the sector as it exists in Canada. One of the very interesting findings from that profile is that the lowest level of voluntarism happens in universities, followed quickly by hospitals, and that all other areas of the charitable sector have a much higher participation of volunteers than those two. Now, this study didn't delve into all of the reasons for that, but I wouldn't be at all surprised if it has a lot to do with the perception that those are essentially government agencies.
There are many people in the long-term care system now who envisage the MSAs that are going to emerge from this reform as something like hospitals, as having a governance structure that's something like hospitals and having a degree of accountability to the community that's similar to hospitals. Certainly in a large metropolitan area, and I don't think this pertains as much in smaller towns and cities in Ontario, but certainly in Metropolitan Toronto, I don't think there are many people who feel that their hospitals are particularly community accountable or that their hospital boards are that way either.
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Mrs Haslam: In my community it's different. I see the volunteers committed to the community. Some people in a volunteer situation volunteer for 11 different agencies or 11 different programs and they do things through my church or they do things through Meals on Wheels, so the commitment is there to the community. Maybe it isn't Metro Toronto, but the volunteer base in my community I think will still be there, because their commitment is to the community.
Mrs Barbara Sullivan (Halton Centre): I appreciate what is a very thoughtful and thorough brief. I'm going to move away from the volunteer activity for the time being, although I think you've made your point, that that has to be emphasized a great deal more. I'm going to move back to some of the areas which you have alluded to throughout your brief with respect to the responsibilities of the DHC in shaping an MSA to meet the needs of a community.
My very great concern is in fact that this legislation prescribes a model that must be put into place right across the province; that it is not a model that many communities have already indicated they want, that they feel will meet their needs; and that there's no place for special needs, some of which you've mentioned, but I think of needs for people with dementia. You've mentioned the AIDS patients. I think of other special diseases. I think of faith-based needs that are not met through this particular model.
One of the areas where you have suggested there ought to be flexibility is an area where we are putting forward an amendment, on the 20% rule. I think your suggestion that that 20% decision, made by the DHC, or a decision on the level of purchased services made by the DHC, is probably an appropriate one. Certainly we will take a very hard look at that.
I'd like you to comment, if you would, on allowing DHCs the flexibility to select another model, which is certainly the direction that we are leading into. We feel we will lose too much with this prescribed model the government has put forward and in fact we'll lose a great deal of the culture and basis of our communities in Ontario.
The Chair: I regret I have to request a reasonably brief response.
Mr Floyd: It will be a brief response; it can be a brief response. I agree quite strongly with what Mrs Sullivan is suggesting. I think the experience I have had in the DHC planning process around long-term care reform here in Metropolitan Toronto has not been a very encouraging experience. I've been involved in a total of three different task forces and committees in this DHC, so we've been exposed to a lot of people who are involved in the planning process and in the attempt to implement this policy in Metropolitan Toronto, and I can say quite frankly and quite honestly that those committees have continued to exist only because people have said, "Well, the government's decided that this is the way it's going to have to be, so we're going to have to try to figure out something that doesn't do too much violence to the services and the system, that tries to achieve some of the accessibility goals and equality-of-service goals that are the objective of long-term care reform, but tries to preserve as much as we can of the community spirit, the sense of involvement and the sense of responsiveness that we now have in the existing agencies."
I think there's no question that there's virtual consensus among the people I've dealt with in this reform process that they would like to see a much larger role preserved for the existing agencies within the umbrella of an MSA-type system that would improve accessibility and ensure equivalence of services throughout the province.
Mrs Sullivan: That's what we've been hearing through the province, too.
The Chair: I regret time means we'll have to move on, but I want to thank you again for the presentation and the attachment which you brought with you.
MUNICIPALITY OF METROPOLITAN TORONTO, HOMES FOR THE AGED DIVISION
The Chair: I call on the next witness, from the municipality of Metropolitan Toronto, homes for the aged division. Welcome to the committee.
Mr Dennis Fotinos: My name is Dennis Fotinos. I am a Metro councillor and I'm also the chairman of the community services and housing committee. I have with me today Ms Sandra Pitters, who is the assistant general manager for the homes for the aged division, and Mr Chris Brillinger, who is also with the community services and housing department with the grants division.
I am pleased to have the opportunity to address the standing committee on social development on behalf of the municipality and to share with the committee some of our observations and concerns with respect to Bill 173.
Metro has been in the business of long-term care since its inception in 1953. We currently operate 10 homes for the aged, a large supportive housing program and a number of community services, including meal services, adult day programs and our homemakers' and nurses' services program.
We are the largest provider of long-term care in the province, operating close to 2,700 long-term care facility beds and 405 beds in the supportive housing program and providing services for over 25,000 consumers living in the community on an annual basis. In addition, through our community services grant system, we directly fund 78 community support agencies and elderly persons' centres in the amount of approximately $3.5 million annually in municipal dollars.
In total, Metro contributes approximately $31 million annually to the provision of long-term care services for the combination of long-term care facilities, supportive housing and community services. Considering solely those services directly affected by Bill 173, we contribute approximately $6.5 million annually in municipal dollars.
However, our commitment far exceeds our financial contributions. We have a strong commitment to serving our community. We have demonstrated this through our long and successful history in planning, managing and delivering high-quality long-term care. We have continuously improved and expanded our care and service system because of this commitment to community service. Our record for excellence and for innovative and consumer-sensitive service is second to none.
We have seen many changes in long-term care since Metro's inception in 1953. However, the most substantive changes have occurred within the past 18 months, first with Bill 101, then with Bill 120 and now with Bill 173.
Not only have these bills radically changed the long-term care system, they have fundamentally changed the relationship between the municipality and the province and the role of the municipality in planning and managing services. Therefore, I find myself in a dilemma in addressing you today. While I can assure you that Metro is supportive of the broad aims of this bill, that is, the effort to make the system more efficient, accessible and accountable, we have strong concerns about the means envisaged to achieve those ends and find it impossible to support a number of the provisions within the bill.
Specifically, we have concerns about the bill's impact on a continued municipal role in the long-term care system, in particular with respect to the planning and service coordination functions.
We find incongruity between this bill and the province's stated principles of redirection. Some members of the committee might recall that when Metropolitan Toronto addressed the committee with respect to Bill 101, the Long-Term Care Statute Law Amendment Act, we endorsed the vision and general principles of long-term care reform but raised strong concerns that good intentions might be lost in implementation. Those fears were well founded. Bill 101 has turned from concern about care and service to one issue, that of dollars. The realities related to insufficient funding and staffing and stability have taken the foreground.
We don't want the same thing to happen to Bill 173. Therefore, we must again voice our strong concern. The vision reflected in the values and principles of reform has been lost. This bill does not express the quality-of-care and quality-of-life principles that were so much part of that vision.
Despite a well-meaning attempt, this legislation is flawed to an extent that it will jeopardize what is good in the existing care system, and it is impossible for a coordinated, effective system to emerge as a result of its future proclamation. In other words, we're throwing the baby out with the bathwater. Indeed, this bill destroys grass-roots community service programs as we know them. We predict that if Bill 173 is proclaimed as currently drafted, there will be a high price to pay in the loss of volunteer hours and local community identity, as was noted earlier by the previous speakers.
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Most alarming is the fact that the legislation entrenches a rigid new system, based on eligibility criteria, rules and regulations and provincial control, with no guarantee that it will be more qualitative or effective than the one we now have. Even though there is a four-year legislated transition period, the dynamics of organizational and systemic change will result in unforeseen and undesirable, we believe, impacts. Enormous human resource issues will be encountered. However, this legislation is very rigid and prescriptive, detailing the mechanics of the proposed system to an extent that it will make it impossible to accommodate future changes. Legislation is not the place to be overly prescriptive, although I will acknowledge that some details of the system belong in regulations and policies.
I'd like to raise two general concerns at this point prior to getting into the specifics of our presentation.
First, I must protest the time frame provided for response to the draft legislation. The bill received first reading on June 6 and second reading on June 15. We're now in the midst of August and we're already in the middle of the schedule for public hearings. Many boards of voluntary organizations, and indeed many municipal councils, I think, do not hold regular meetings during the summer months, at which time they could analyse the bill and make constructive comments.
As previously stated, Bill 173 radically changes the long-term care system. It affects the way in which communities will redefine the mandate of their community agencies and the governance of a crucial public trust. I urge you: Do not rush this bill. It is too important to the future wellbeing of seniors and persons with disabilities.
Our first recommendation is that we recommend that you extend consultation respecting Bill 173 until at least November of this year in order to allow municipalities and voluntary organizations ample time to consider the impact to their communities and to respond appropriately.
Also, I must raise concern that this legislation reinforces an artificial distinction between facility-based and community-based care that is inappropriate and unnecessary if the primary purpose is to ensure that consumers have access to appropriate care and service. I can find no statements in Bill 173 that speak to the original vision of meeting consumers' needs by creating an integrated health and social services system.
I'm sure the committee is aware that Ontario is only one of many provinces restructuring their long-term care systems. We should critically examine other jurisdictions before dismantling our current service system. New Brunswick recently redirected its resources from facility beds to community programming. However, the province redefined the mandate of long-term care facilities, broadening their scope of services to become the primary providers of a full continuum of long-term care services. For example, one facility now offers Meals on Wheels, home care, relief and a host of other services in addition to the long-term care facility. New Brunswick has recognized that community services offered by long-term care facilities contribute to building sound linkages between the facility and community and utilizes resources effectively.
The artificial barrier between facility-based and community-based long-term care created by Bill 173 must be removed.
I'd like to get into the specific recommendations that have caused us concern. I hope that this overview will lay a foundation for dialogue with the committee and certainly in the Legislature and perhaps at the end of the presentation.
Though there are some areas of strength in Bill 173, we also see negative implications, particularly in the areas of provincial control, system quality and effectiveness, community accountability, funding and consumer choice and representation.
First, the issue of provincial control: The province appears determined to introduce overly prescriptive legislation that virtually assures the development of a rigid, inflexible and hard-to-change community services system. I think that's been echoed by the previous two speakers as well. I must ask you, to what end? What people asked for was improved access to services, elimination of repetitive assessments and an improved information and referral system. They did not ask for provincial control. Yet this bill legislates everything, right down to the relationship between a consumer and the service provider.
While the drafters of this legislation developed a guiding bill of rights, the requirement that all service providers simply accept these legislated rights rather than develop rights documents with the participation of their boards and consumers that are based on the legislation is wrong and does not reflect the principle of consumer participation.
Much of the detail in this bill centres around rules: rules about multiservice agencies, rules governing approved agencies, rules governing service providers and rules about revocation and takeover power. The detail in these sections of the bill is overwhelming. I don't think it's desirable for the province to attempt to micro-manage a system of community services. That role should be left to the regional and local level.
There is an inordinate emphasis on the minister taking control and operating agencies and facilities which do not meet ministry management criteria or which choose to relinquish control to the ministry. While it is appropriate that the province make due provision for the protection of vulnerable consumers, the legislation emphasizes the issue of ministerial takeover to an extent that could well indicate a profound lack of confidence in the governance of all community-based agencies, including charitable and municipal homes for the aged.
The prescriptiveness must be removed from the legislation in order to avoid the introduction of a rigid, inflexible system that does not meet future needs. The degree of ministerial control and takeover power must be reduced.
The next issue is that of system quality and effectiveness. The province has developed the MSA concept in the belief that it will solve the problem of a fragmented and confusing system of long-term care. In fact, I think they've missed the boat. The real problem is simply fragmented service delivery, which only requires improved coordination as a solution, not the elimination of community agencies that have consistently demonstrated flexible, quality service.
The province has gone too far in its reform agenda and is now creating instability in community agencies that is certain to have a negative effect on consumers and on system quality and effectiveness. Development of an effective, integrated information system would enhance the coordination of community services and eliminate the perceived need for a complete overhaul of the way service is delivered by community-based agencies.
There is only one clause in Bill 173 which speaks to quality management. There are many clauses which address provincial inspection. Bill 173 makes an incorrect assumption that increased quality will result from a strong provincial inspection and takeover process. This is not the case. I believe, and the municipality believes and our staff believe, that quality will only result from the commitment of boards to assure quality in their own operations.
It is not in the public's best interests to establish a costly, inflexible, bureaucratic inspection process if it is not going to result in a better outcome to the consumer. The province needs to respect, trust and support the governance structure of approved agencies rather than interfere or take over the role of governing.
Also, this bill limits an MSA's ability to purchase rather than directly provide services to 20% of its budget within each program area. Again, this was echoed earlier. The prescription contained in this bill may not be appropriate to meeting the needs in many communities across the province. Indeed, looking to Metro where our district health council is planning for 15 to 20 MSAs, we have concerns that gaps and inequity in service levels will emerge. These might best be responded to by Metro-wide approved agencies. To cap purchased service at 20% is premature and misguided. Rather, we must concentrate on making best use of existing resources on behalf of consumers.
We recommend that MSAs be restructured to provide primarily a coordinating function. The provision for purchase of services must be expanded.
I'd like to deal at this point with the community accountability issue that's been raised. Presumably, district health councils across the province are working within their respective communities to design and develop MSAs. Yet before the DHCs have designed MSAs, the province has prescribed the form, administrative and governance structures, accountability and service configuration of the agency. The legislation entrenches a cookie-cutter approach that may or may not be effective. This hardly constitutes sensitivity to community needs.
The bill also directs the minister to consider all other approved agencies prior to considering a municipality or a board of health as an MSA. Organizations are at levels of government of elected representatives that have been providing this service for a long time. This is particularly offensive to a municipality such as Metropolitan Toronto which, as I said earlier, has a strong history and traditional role in planning and delivering community services, and we are a significant funder. If we're not doing the job correctly, eliminate Metro. Municipalities should be considered first, not last. They have the structure in place to ensure community accountability and service responsiveness.
The minister is permitted to designate more than one MSA to a geographic area, but the bill does not specify that when multiple designations are made, they should reflect the diversity of the community. For example, Metropolitan Toronto has a strong network of both mainstream and ethnoracial agencies. It is our experience that this mix is the preferred option for service delivery in our community.
With respect to DHCs, this bill puts forward a legislative framework and increases the power and scope of authority of DHCs related to planning and making resource allocation recommendations about community services. This was a traditional role of municipalities, and the province virtually ignored municipalities. They did not involve them in any discussions prior to making this decision.
It must be remembered that district health councils are unelected. They are intermediate bodies that serve as liaisons between local governments and the province and may actually represent a barrier to direct accountability. It is our belief that the allocation of resources and the balancing of priorities are functions of the municipality, which is an elected, local body with clear community accountability.
The province must engage municipalities in joint decision-making regarding the future system of long-term care community services and recognize and reaffirm municipalities' legitimate role in planning and delivering community services and extend this role to cover resource allocation recommendations.
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Next, there are some very important issues around funding. The province must not reform community services and, at the same time, not be clear about the amount of money needed to sustain the reformed system, nor about the amount of money it can provide.
We should learn from the errors made with respect to Bill 101. We need to stabilize community services, and clearly there are practical limitations on the province's ability to fund all services. For taxpayers, a concern that is just as important as maintaining consumer dignity and independence is the cost of the system. Based on the experience of facilities following the implementation of Bill 101, the prospective cost of implementing Bill 173 is extremely high. The province does not have the resources to underwrite the entire system and to forego current revenues derived from municipal, voluntary and user contributions. Yet the province has not involved the alternate funders in any way in planning this revised system; not one discussion has taken place.
Using our own municipality as an example, Metro contributes $6.5 million annually to agencies and organizations that will be affected by this bill. Other alternate funders, such as the United Way previously and charitable organizations, contribute approximately $6 million. It is, I think, irresponsible on the province's part to unilaterally create a new system while at the same time to hope and expect alternate funders to keep funding.
I need to inform you that Metropolitan Toronto council will fund those organizations and initiatives which are consistent with its own strategic plan and social development strategy, and those might not be the same agencies as in the past that might now be subsumed by the emerging MSAs.
In the absence of adequate resources to the long-term care community system, needs will not be met and more consumers will fall through the cracks. Inevitably, new services will be created to address the needs and Ontario will return to the fragmentation that has plagued us in the past. Even worse, with the current expectations by consumers of an improved and enriched system, new fragmentation will be devastating.
The province must release information with respect to service needs projections and cost analysis prior to third reading.
In addition, the bill specifies that there can be no charge for certain services. Historically, many services have been operated on a user-fee basis with a simple, non-intrusive means test. In this way, seniors were able to maintain the dignity and independence of paying for their services. Indeed, in Metro alone, home support user fees in the past totalled approximately $4.9 million annually. The province must re-examine the line that has been drawn between what is fully paid and what is subject to user fees. In addition, this bill introduces inequity in charging for services when the application of a user fee is dependent upon a determination by a third party or whether services are or are not essential.
We recommend that the province adopt broader application of user fees with a simple, non-intrusive means test.
Last, and perhaps most important, is the matter of consumer choice and representation. Although the legislation recognizes the importance of individual needs, meeting those needs does not appear to be a priority. This conclusion is reinforced by the concept of access as defined in part I of the bill: Access is based on meeting eligibility criteria enforced through uniform rules and procedures. The idea that consumers must be assessed using consistent criteria so that their needs can be met within the system's resource capacity appears to have been lost. The focus on the consumer is not reflected in the draft legislation.
In addition, by decreasing the number of community agencies and creating large MSAs, the province is decreasing consumers' option of choice. In a monopoly, which is what the proposed MSAs would be, no motivation is built into the system to care about what the consumer thinks or to improve quality or cost-effectiveness. Consumers will have to report dissatisfaction to the same organization that determines eligibility and delivers a service. Apprehension over the result of complaining is exactly the opposite of what the province should be seeking.
We recommend that consumers be given more choice in the service they receive, the extent of each of those services and the provider of those services. A menu approach which reflects consumers' needs and not providers' practices is required. Further, the voices of people who use the services must be adequately represented.
The bill describes an appeals process. However, the prescribed process is not user-friendly and is quite time-intensive. This may well act as a barrier to consumers registering concerns. Appeals need to be locally heard in a timely and responsive manner.
In conclusion, Bill 173 gives the province unprecedented controls over long-term care, the scope of which we have not previously seen in this province's dealings with transfer payment agencies. Conversely, there has historically been a relationship of mutual respect. Bill 173 eliminates this partnership and spirit of collaboration. Through Bill 173, the province is taking over municipal responsibility without any provincial-municipal negotiations. In addition, the bill is threatening the stability of community agencies and their voluntary funding resources.
I understood that seniors and their needs were to be the focus of the reformed long-term care system and were the individuals to be served through the introduction of this bill. If, however, this bill was intended to give the province and non-elected, unaccountable groups total control over long-term care services, then the objectives have been accomplished.
We urge you to seriously consider the real implications of Bill 173 and recommend amendments to this bill in this Legislature in order to recognize and build on existing municipal government structures and to ensure that seniors in Ontario get a system that is based on principles sensitive to their needs.
Thank you very much for your time. Ms Pitters and Mr Brillinger can answer any technical questions and I would be more than glad to deal with any governance issues.
In the interest of time I have about 20 recommended amendments that we'd like to put forward, and instead of going through them one by one now, if I can submit this to the committee for consideration.
The Acting Chair (Mr Dalton McGuinty): Thank you. I want to remind committee members that we are running approximately one half-hour late. We are to be on a bus bound for London at 2 o'clock this afternoon. If you want to allow yourselves some time to pack, collect your thoughts, perhaps make a phone call to a loved one and let them know you're still alive, we'll have to keep moving here. I'm going to cut off questioning on this at 11:55 and we're going to start with Mr Wilson. If one of the parties does not have an opportunity to ask a question, we'll simply begin with them in the next rotation.
Mr Jim Wilson: I will keep it short. I want to thank you for a very excellent and forceful brief, and I want you to just expand. I find it absolutely astounding that Metropolitan Toronto, being the largest provider of long-term care services in this province, was not consulted by this government. You stand by that statement and, having made it, what are your expectations from the government from this point on?
Mr Fotinos: I want to defer that to our assistant general manager for homes for the aged in terms of the discussions that she may have had. I personally have not been consulted and the political end of the municipality of Metropolitan Toronto has not been consulted. Discussions may have happened through the DHC with our homes for the aged division and I'd like to ask Ms Pitters to answer that question.
Ms Sandra Pitters: Officially, Metro Toronto has not been asked for a response to Bill 173. Unofficially, there have been several staff people who have served, including myself, on various committees of Metropolitan Toronto DHC. However, I want to stress that DHC staff have made it very clear that we are there as individuals and we are to take our hats off at the table and not bring the perspective of our employing agencies or, in my case, municipality. So although I have participated as an individual, it has not been with the ability to express Metropolitan Toronto's position with respect to the bill.
Mr Jim Wilson: Thank you. That explains why perhaps there's so much wrong with the bill.
Mr O'Connor: One quick question, because this is alarming: The statements here are made that Metro was not consulted in this. I know that you run good long-term care throughout the community within Metro. It's very expensive, I understand, but lack of consultation -- Mr Quirt, could you perhaps respond to that? Is there not some way that these people do get brought into the loop as far as consultation?
Mr Quirt: Yes. I'd like to say that the staff of Metro Toronto community services have been extremely helpful to us in program design activities on Bill 101 and are represented, if I remember correctly, on a number of our work groups developing policy for the multiservice agency.
Further to that, we've certainly had discussions with the Association of Municipalities of Ontario. I have gone a couple of times myself and presented, and I know my director of policy has gone and the special adviser on multiservice agencies has attended AMO. We're also talking with the staff of AMO now to develop a permanent liaison committee between the Association of Municipalities of Ontario and the long-term care division, so we'd meet on a regular basis to discuss issues.
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I would have to confirm that specifically the municipality of Metropolitan Toronto or any other municipality -- we have not formally written to them and asked them for their comment on the bill itself, but certainly we've benefited from the advice of the staff and continue to do so.
Mrs Sullivan: I think it's extraordinary when the government is talking about community participation that it looks to the province-wide body for consultation on local issues. I just think it's madness.
I think this is a superb brief and many of the issues that you raise have certainly been on our minds. One of the areas that I want to particularly address in my question to you is the effect of now the DHCs' preliminary recommendation for 15 to 20 geopolitical agencies and the impact that that will have on fragmenting services which are now provided on a Metro-wide basis, some of them by you, some by organizations such as the Victorian Order of Nurses, Red Cross and others.
Mr Fotinos: I'll address it on a general level and then I'll allow Chris as well, because he's here for the grants that different agencies get and can speak perhaps on their behalf, and also Ms Pitters as well.
In talking to some of the agencies and some of the people who are going to be affected by the bill, they have expressed serious concern about the lack of choice on the part of the consumer. Currently, consumers have that choice with different agencies that are funded directly by Metro, whereas under the proposed system, especially with respect to ethnoracial minorities, that choice, we fear, is going to be eliminated, and in many cases that ethnoracial barrier is what is an impediment to access to service right now.
Ms Pitters: I agree with Councillor Fotinos's remarks. I could also address the Metro-wide issue in addition to the individual agencies that are being rolled up into an MSA. We're in the particular dilemma of having, as you've identified, a lot of Metro-wide agencies that are being now fragmented potentially into MSAs.
We've met on a staff level with several of the Metro-wide service providers and there's indeed much concern about what's going to happen to service fragmentation and the fact that we believe there won't be the critical mass in the 15 to 20 MSAs to do the job well for some of those professional services.
So we're very concerned about the lack of any Metro-wide system that may result in increased costs and increased problems in accessing service and actually a decrease in quality because the practitioners will not be having the critical mass to maintain skills and competence.
Mrs Sullivan: In fact, service will decline.
Ms Pitters: Yes, that is our concern.
ASSOCIATION OF MUNICIPALITIES OF ONTARIO
The Acting Chair: The next presentation will be made on behalf of the Association of Municipalities of Ontario. I'd ask those representatives to come forward, please.
Mr Reg Whynott: My name is Reg Whynott and I'm here today in my capacity as a vice-president and the chairman of the health and social development committee of the Association of Municipalities of Ontario. Accompanying me are Ms Janice Mills, who is also on the committee and is the administrator of the John Noble Home in the city of Brantford, county of Brant, and Mr Phil Johnston, a member of our committee at AMO, commissioner of social services for the region of Waterloo.
We appreciate very much the opportunity to appear before the committee today to give you a position on some areas of concern that AMO has with Bill 173.
Although as an association we support the need for reform, and in fact have offered to meet government to government with the province of Ontario on a number of occasions now, we do have some concerns with some of the suggested processes in here and we will be expressing those to you in our presentation.
It's my intent, with your permission, to share my presentation with my two colleagues for two reasons: One is their expertise and experience, and the other is, I don't think you want to sit and listen to my voice for 20 minutes. I'd like to give you the opportunity to hear from a different perspective.
The Association of Municipalities of Ontario, on behalf of its member municipalities, numbering over 700 and representing approximately 95% of the population of this province, appreciates the opportunity to make our presentation to your standing committee on Bill 173.
Over the years, our association has monitored and commented on the reform and redirection of the long-term care system. Given the time constraints and the importance of the matter to our association, AMO has chosen to focus our submission today on the impact of the reform on the role and status of local governments in the new, proposed long-term care system.
On the subject of positions on governance, in responding to the government's various consultation papers and policy decisions on long-term care reform, our association has continually voiced its vexation with the province's disregard for the extensive municipal involvement in the long-term care system. As a result of this lack of acknowledgement, AMO has proposed on numerous occasions the need for an examination of provincial and municipal responsibilities in the long-term care system. To date, no formal examination or government-to-government discussions have taken place to address this issue, despite AMO's efforts. Our brief sets out AMO's concerns with the redirection initiatives and their implications on a continued municipal role in the long-term care system, in particular on the planning and service coordination functions.
In 1993, our association prepared a policy direction paper entitled Municipal Option -- Local Governance in Health and Social Services. This document was prepared as a result of two major factors: Major provincial reforms were under way which would have significant impact on the municipal role in health and social services. These major systems reforms, which include long-term care, were not being addressed in a comprehensive framework and thus the overall impact on the municipal sector was not considered. Indeed, as part of these reforms, the province proposed the establishment or enhancement of responsibilities of local special-purpose bodies to assume planning, management and delivery responsibilities.
Municipal option was developed based on the belief that a fundamental restructuring of provincial-municipal responsibilities for health and social services will have a major impact on the future nature, focus and relevance of municipalities as local governing authorities.
Long-term care redirection is a major reform which has and will continue to have an impact on the municipal role in health and social services. As part of the reform, special-purpose bodies have been proposed to assume planning, management and delivery responsibilities.
Municipalities are a level of government committed to ensuring and improving the economic, environmental, social and public health of communities municipal councils represent. To fulfil this role in the future, the authority and scope of municipal government should be expanded and not fragmented among new local governing structures ie, special-purpose bodies. The relevance and effectiveness of municipalities in the future requires that as a level of government, municipalities are able to have input and involvement in the factors determining the quality of life and economic prosperity of their communities.
Municipalities are local governing corporations. New local authorities, as proposed in the reform of long-term care, will not improve the ability of municipal governments to meet the needs of their communities.
AMO has continually called on the province to work with the municipal sector to determine the appropriate local authority model for health and social services in their communities. Our association strongly believes that municipalities should ultimately make the decision in the local authority for health and social services. However, AMO believes that this can only occur if the province recognizes the values of the municipal role and agrees that the municipal option should be the first option.
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In late 1993, AMO responded to the Partnerships in Long-Term Care series through the development of a document, Calling for a Municipal Option in Long-Term Care. Although the province did not solicit comments on these documents, AMO felt a response was necessary given that the directions proposed raised numerous questions and grave concerns with the future role of municipalities in the long-term care system. The AMO document concentrated on two aspects of the reform: District health councils assuming the lead in planning for the long-term care system, and the establishment of multiservice agencies to assume the service coordination function.
Our association continues to have fundamental problems with some of the provincial government's decisions. These are decisions which, in our opinion, are resulting in a diminishing role for municipalities in long-term care programs and services, and it's our position that municipalities must share in the decision-making process on the issues which impact on their future role in the system.
AMO has argued and continues to argue that special-purpose bodies such as district health councils are neither financially nor politically accountable to municipal governments or the public they represent. Yet, DHCs have been delegated the responsibility of advising the provincial government on the allocation of funds and the planning of health and social services. In this advisory role, they have an impact on the setting of priorities for long-term care expenditures at the municipal level and, as an unelected, intermediate body between local governments and the province, they also represent a barrier to direct accountability.
The province has delegated to DHCs the responsibility of guiding the design of the local MSA models. This responsibility includes recommending to the minister the appropriate MSA structure which must be in accordance with provincial expectations and legislation. AMO is concerned that the province, through Bill 173, is attempting to enshrine the roles and responsibilities of DHCs within legislation without a formal review of their accomplishments and ability to assume new and expanded functions. Furthermore, DHCs will be responsible for determining the appropriateness of a municipal structure assuming the functions of a local MSA. DHCs have thus been empowered to decide the future municipal involvement in the reformed system.
In response to the partnership documents, AMO expressed its acceptance with the fact that DHCs have been given a role and mandate in reform beyond that given to municipalities, but noted that DHCs could not meet the principles of the reform without a strong role and involvement of municipal governments. However, with every new decision made by the province, the role and involvement of the municipal sector, in our opinion, is being diminished.
Our association realizes that the Ministry of Health, in conjunction with the Association of District Health Councils of Ontario, has examined the roles and mandates of DHCs in the health system to determine what is necessary to achieve and support their expanded role. This review was not an open process in that it did not allow other stakeholder groups an opportunity to provide a critical assessment of the performance of the DHCs.
AMO calls on the province to conduct a formal, consultative review of the DHC's mandate and structure. I speak as a former member, in fact the former chairman, of a DHC which we thought was one of the best in this province and I think that review is overdue.
The next issue is multiservice agencies and I would like to ask Ms Janice Mills to bring some brief comments on that area.
Ms Janice Mills: It certainly is a concern of our association that the introduction and passage of Bill 173 will further remove responsibilities from the auspices of municipal governments. Rather than recognizing municipalities as a level of government, the Ministry of Health, in this piece of legislation, recognizes municipalities as only or yet another body in the myriad of agencies that are involved in the provision of long-term care programs and services.
As presented in the former presentation by Metro Toronto, municipalities have a long history in the funding, management and delivery of services and programs, which include the operation of homes for the aged and other housing for the elderly, the home care and integrated homemaker program, the administration of the Homemakers and Nurses Services Act, grants to voluntary organizations assisting the aged and certainly a large number of other programs. Many of our municipal homes -- and I was pleased to hear the discussion about the setting up of the artificial barrier between the community and facility care because many of our municipal homes for the aged also integrate the provision of care in the home with the provision of other services such as Meals on Wheels, help lines, senior day care and specialized Alzheimer's day care, as well as a number of other issues and programs.
Mr Whynott: As argued in AMO's most recent document, Ontario Charter: A Proposed Bill of Rights for Local Government, municipalities are more than agents of service provision. They are essential to meet the needs, concerns and aspirations of the diversity of citizens who live in our communities. In terms of the lives that citizens lead and the concerns they have, local government is, to many, the most important level of government, with all respect, dealing with matters of direct and immediate concern and providing the most accessible and directly accountable political institutions. Bill 173 bypasses municipal councils as the representatives of local communities and instead moves towards introducing a new body to assume functions municipal governments are suited to perform and have been performing in the past.
Our next section comes with great concern and I'll ask Mr Phil Johnston to comment.
Mr Phil Johnston: I won't be reading from the brief. I just want to suggest to you that since the onset of the reform, one of the features that has been particularly offensive to municipalities and to their dedicated elected officials and staff has been the refusal to acknowledge municipalities as an appropriate governance structure for the MSA.
I was impressed with the Metro presentation that preceded ours, but I did want to make the point that Metropolitan Toronto is an exception only by scale. All across the province of Ontario municipalities are heavily engaged in the provision of long-term care and have been for many, many years.
If I could use the municipality that employs me as a smaller example, we are now involved in the administration of some $35 million of long-term care, employing 215 full-time and 200 part-time staff in direct services to the elderly and the disabled, programs that encompass home care and IHP, homes for the aged, Homemakers and Nurses Services Act, grants to home support agencies, the provision of Meals on Wheels and Alzheimer's day program and a seniors' day care program. Those are just some of our programs, there are others.
I'm here to probably restate, because it's been on the books for a very long time, not just with respect to long-term care but with a broad range of health and social services, the municipal position that the right of first refusal is a legitimate right of municipalities when it comes to providing community services. I've tried to indicate to you that as a level of government municipalities, particularly at an upper-tier level, have a proven commitment to the provision of long-term services and should indeed have that right of first refusal.
AMO would ask the province to delete subsection 11(3) of the draft legislation and to work with municipalities to establish criteria for determining local MSAs which respect the principle that existing local government structures should first be explored to serve as the MSA and that special-purpose bodies be used only as a last resort.
As an aside, I also want to note that municipalities currently provide a broad range of services, much of which is unfunded, but which will have to be funded in an MSA structure. I think, as an example in our own municipality, of the financial services expertise that is available to programs which is not fully funded; the human resources expertise that is available to our programs that is not fully funded; the legal counsel which is available in our municipality and which is not fully funded; and information systems which have been developed to service our programs which are not fully funded, in some cases not at all funded.
There is much to be lost, in my opinion, in a rejection of municipalities as the potential governance structure in the long-term care reform.
Mr Whynott: We have some very brief general comments on the legislation in a couple of particular areas and I would ask Janice Mills to comment on decentralized decision-making.
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Ms Mills: In general, we have looked at the paradigm of rethinking government, which suggests that senior governments should focus on setting broad policies, legislation and standards for public programs, leaving the definition and implementation of local policies and delivery to local authorities and governments. In reforming this system, the province has expressed a desire to increase the flexibility and the responsiveness to individual and local needs and to attain community involvement in decision-making.
In other words, it appears as though the province is attempting to decentralize the decision-making process for the long-term care system and to reduce the provincial government's regulatory and supervisory involvement. However, in reviewing the draft legislation, the province continues to have an extensive role in the decision-making process which results in a more centralized system. However, the objective of the long-term care reform is to empower decision-making authority at the community level. The association does not believe that this objective of the government is being achieved with such a prescriptive piece of legislation.
Although I have no intention of reading it, I would like to use as an example subsection 52(2) of the draft legislation in referring to what, to ensure compliance with the act, a program supervisor can do. We have in the past dealt with program supervisors, but it has not been legislated to this extent and to this prescriptive nature.
Our association finds that this provision is very intrusive on the part of the ministry in the activities of our service providers. The association views this provision to be contrary to the intent of the legislation. It certainly can be argued as one reason for the overly prescriptive nature of the legislation the very fact that local MSAs will be unelected and unaccountable agencies and therefore requiring the watchful eye of a large central bureaucracy.
Furthermore, in section 56 of the legislation, a list of regulations which may be introduced by the Lieutenant Governor are set out. Approximately 42 of these issues, for which the details are uncertain at this time, will be addressed or are addressed in this section. It can be concluded from these regulatory requirements that local flexibility will be limited largely to the details and decisions on matters of lesser importance. Again, this appears to contradict the intent of the legislation which is aimed at achieving local flexibility through the development of MSAs which were intended to operate as separate and apart from our government.
Mr Whynott: I'll ask Mr Phil Johnston to comment very briefly on a couple of other areas: labour implications, mandatory services and the very vague section on exemption of MSAs.
Mr Johnston: The association has grave concerns around the significant and substantial problems and costs that are associated with the move to a direct service delivery system from the current brokerage system, which is typical across Ontario. There are many questions that remain outstanding related to the staff and agencies that currently provide service to the clients, for example, under the home care program. There are collective agreements, employment contracts and agency contracts that represent legal commitments by municipalities which were formed on the basis of the current mandate of the municipalities. The association questions how and when the province intends to address and deal with these labour implications which will result from the implementation of the act.
I would note, for example, that the nature and extent of these difficulties are illustrated perhaps by the recent attempts at General Welfare Assistance Act and Family Benefits Act integration where we were dealing with only two labour unions largely and could not in fact resolve the difficulties that were apparent and not so apparent.
I'd also like to speak very briefly to the concern with the development of a list of mandatory services -- the concern, of course, is not with providing services to seniors and the disabled; the concern is with the funding of those services -- and simply to note that already in municipalities it's been made clear to us that both in the homes for the aged programs and in home care and other programs, funding restraints are in place and are continuing into the coming 1994-95 fiscal year. One is very concerned, of course, as a consequence of that, as to how additional services are to be funded when in fact current services are running into extreme difficulty at this time.
With regard to the four-year exemption on the MSA, the intent of this section raises a number of questions and concerns. As it states, the minister may relieve an MSA from providing some or all of the mandatory services and/or limiting the services purchased by an MSA. This exemption provision is extended for a maximum period of four years.
The implications of this provision are massive. Given that there is resistance by agencies to enter into an MSA structure, and that must be clear and understood by all, this provision would provide them with the opportunity to avoid integrating their services and assets. It is unclear what the decision-making process would be for implementing such a provision. Would it be based on a set of criteria, and, if so, what are these criteria? The association is uncertain as to the purpose and the intent of this section.
Mr Whynott: In conclusion, as the reform of the long-term care system proceeds, it is evident that despite their extensive experience in governing, managing and funding long-term care services, municipal governments will not be a part of the decision-making process in the reform system, nor has their role as a level of government been recognized by the province as it moves forward to implementing its decisions.
The arguments put forward in our brief, in short, contend that the reform will not achieve the following objectives: greater community empowerment, decentralized decision-making, integrated local programs and services, accountability, reduced government bureaucracy, or an efficient allocation of limited government resources. Note I stress it will not accomplish those. The bill must be recast so that it recognizes and builds on existing local government structures which we contend can lead to achieving all of these objectives that you desire.
AMO's offer to consult government to government still stands. We are willing, we are interested, and we thank you for the opportunity to be with you today.
Mr Jackson: I find myself concurring with virtually everything that's been presented in this brief, but you have brought focus to some areas that are cause for some great concern when you juxtapose the fact that we're concentrating so much power in a non-elected, non-accountable body with a series of expectations without any funding commitment from the province.
That seems to be the nub of your concern. Your solution lies in the fact that you weren't consulted, nor are you part of the legislation, which would have provided the necessary safeguards to the merging of those two problems. Is that not correct?
Mr Whynott: That's correct.
Mr Jackson: I raised this question earlier, before you arrived. It was about the municipal social services review. The Ron Book commission is well known to Chairman Whynott and myself. When was the last time that AMO was, in that similar-type fashion, consulted about merging and reviewing the relationship between the provincial government and social and health services, which is what I understand the Book commission was about? When was the last time you felt you were being asked to participate at that level in these consultations?
Mr Whynott: Since I've been involved with AMO, we haven't been asked, but perhaps I could direct that to Mr Johnston, who has been around a little longer than I have.
Mr Johnston: I was a member of that particular review and I believe that's the last one that I'm familiar with.
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Mr Jackson: It simply died on the vine. We never did get an official government response from the previous government or this current government about that, but a considerable amount of work went into that and it dealt with some of these issues, as I recall.
Mr Johnston: Very much so.
Mr Jackson: In the interest of time, Mr Chairman, I'll yield because there are several additional groups yet to be heard from. But I thank the deputants for a very clearly enunciated brief and hope that the current AMO conference will bring even more attention to your concerns.
Mrs Haslam: I'd like to step back and take an overview of what you had and maybe focus on a couple of items. I see that you are raising concerns about "politically accountable to municipal governments," the MSAs financially and politically accountable to municipal governments, and again on page 5, municipal governments "suited to perform" the functions of an MSA.
I'd like to focus on people we seem to have forgotten over the last little while, and that is consumers. Consumers told us they wanted less fragmentation and more accountability, more input and more hands-on in the long-term care that they were the consumers of. For instance, I know there's a seniors' group coming forward, and they're talking about consumers being fully involved at every stage of decision-making at the government level: district health councils, long-term care committees of DHC, consortiums, designing MSA proposals and the MSA, and in the planning of their own personal care.
That's what I like about what has been suggested, because we're drawing together a patchwork that's out there now of functions and agencies, over 1,000 agencies, drawing those together, making sure the facilities or the programs offered are consolidated and making sure that we're getting into local decisions, local representation on boards, local planning at the district health council with consumers on those boards, local accountability where they have someone to go to when they're looking at making a complaint -- I would hazard a guess nobody comes to complain to a councillor when the Meals on Wheels isn't delivered on time -- more consumer input, because they have an opportunity to take part and take control and work with the person on the plans that they have.
We're attempting to bring community-based governance structure to a long-term care system, and I wondered if you could tell how a council or a board would be able to refashion itself to become an MSA.
Mr Whynott: Not to be argumentative here today, I can suggest to you that if you wish to attend at a meeting of my region's health and social services committee, which meets twice a month, you'll find there's not a meeting goes by without a delegation from the organizations that you have just indicated.
We have a number of them who work very closely with us in the provision of services, and in fact we've changed the role of these people, as have many municipalities, to call them advisory groups, because we do want their participation and we've all learned the lesson over the years that consumers are very, very important. They're the people that many are neglecting.
Mrs Haslam: But I think that "advisory group" is the key. I think what consumers want is not to be an advisory group, but to be part of the board on an MSA.
Mr Whynott: With all respect, I would suggest that if I was sitting as chairman of a district health council and a delegation came before me, no matter what their issue was, I don't have to be concerned that that delegation can move me out of office on the district health council, but I certainly can if I sit on a municipal or a regional council.
Mr Jackson: You'll know all about that in the spring.
Mrs Haslam: No. I love these political things that come into committees.
Mr Whynott: I'm sorry. I'm just trying to answer your question.
Mrs Haslam: No, no, no. I just feel that more input is available either at a locally controlled district health council, at a local input on an MSA board, but more so there than they have an opportunity for under a municipally run situation where you would be an MSA. The comments were that they don't want it to be a bureaucracy, that type of government; they want it to be in a more locally responsible way. I'm asking how you as your board would fashion yourself into that type of MSA.
Mr Whynott: In response to that, I guess what I'm saying is that we are doing that across the province in our municipalities and our regions. We are listening to the consumer. We are adapting our performance and our provision of service to the consumer. Rather than what we think we should be doing, we are asking for and getting direct input and information.
I can't speak for every municipality, but I know that's the process and the way we're going in most municipalities. Never have municipal governments or regional governments found it so necessary to listen to the public than they do today. More and more, as we state in our brief, the people of the community look to the municipal government as their government and their government of contact.
To take this away from the municipal governments that the people choose and to give it to an agency that someone on the outside appoints does not to me suggest accountability. It suggests you're removing the accountability and putting a buffer between the province and the people.
Mrs Haslam: I see accountability as having people on the board.
The Acting Chair: I'm sorry, our time has expired. Thank you very much for your presentation.
Mrs O'Neill: Mr Chairman, both times you've started with the Tories in the rotation of questions, and therefore I don't think that's quite fair.
The Acting Chair: We'll begin with the Liberals next time, Mrs O'Neill.
CANADIAN PENSIONERS CONCERNED, ONTARIO DIVISION
The Acting Chair: Our next presentation is made on behalf of Canadian Pensioners Concerned. Welcome.
Miss Mae Harman: We're appreciative of the opportunity to appear at these hearings and share with you some of our views on long-term care reform. My name is Mae Harman. I'm president of the Ontario division of Canadian Pensioners Concerned, and I'm one of 10 consumers on the north Toronto consortium which is planning a proposal for an MSA. I'm not here alone. A number of our board members are in the audience.
Canadian Pensioners Concerned advocates on behalf of seniors in regard to issues of concern such as medicare, old age security, taxation etc. We have a lively correspondence with government officials, develop position papers, send delegations, hold public forums, sit on advisory committees and issue a newsletter four times a year. As well as pressing for government action, we see education of both our members and the public as an important function. We also want to counteract some of the myths about seniors. We are affiliated with a number of other seniors' organizations that share mutual interests, and we network with organizations on an ad hoc basis.
We are a voluntary, non-profit organization composed largely of seniors and funded primarily by membership fees and donations.
Most seniors welcome long-term care reform because we see it as an opportunity for less intrusive, more convenient, appropriate, quality care with greater opportunities to be involved in decision-making and with more choices available. The purposes of the act as set forth in part I are indeed commendable. They imply that consumers will be treated as persons of worth and dignity and that they will receive the right service at the right time in the right place and by the right care giver.
Does Bill 173 assure that these principles will be carried out?
As with most bills, much of the detail is left to the regulations. But decisions about such matters as eligibility criteria, fees for community services, hours of service, a framework for the complaints process etc are so vital as to require public debate. We join with some other groups in requesting that the major regulations be tabled at the time of third reading of the bill or prior to it so that there can be some public input.
Is the bill to be client-driven or budget-driven? Preconceptions that community care would be less costly than institutional care appear to have been gross misconceptions. Cuts in grants and staffing at the facility level, with resultant hardship to consumers, make us uneasy that community care may be unable to deliver all of its promises and that we will be faced with long waiting lists, difficult decisions about priorities and lack of care for many people who need it.
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Already people are falling through the cracks in the system. Like the reform of mental institutions years ago, cuts in hospital services were made before community services were in place. As the task group on transitional care has stated, people are now being discharged from hospitals sicker and quicker than ever before. This has led to unnecessary complications and general deterioration in health of senior patients, and in some cases premature death.
Another misconception about care in the home was that most people had family members who would carry the prime roles in care. Many people have no available family or significant others to help them. Many women, the traditional care givers, now work outside the home, either as a career choice or as an economic necessity.
Convalescent care on a short-term basis will always be a need. We fully support the following proposals of the task group on transitional care:
(1) Extend the mandate of the pilot quick response teams to include patients being discharged from acute care. Short-term enhanced in-home care to the level, if required, of hospital in the home must be available for seniors leaving hospital after surgery or major illness.
(2) Fund community in-home support service agencies so that they can include, where appropriate, evening and weekend shifts. In the week or two following any kind of acute care, current levels of in-home support can be grossly inadequate for those who are without an able-bodied, live-in family care giver.
(3) Increase the number of beds for transitional and convalescent-level care either within existing hospitals or in other care facilities as an alternative to the above.
In addition, family members who choose to care for people in their own homes on a long-term basis need recourse to respite care and financial compensation. This was dealt with in some detail this morning by the Alzheimer group.
Are consumers truly represented where decisions about long-term care reform are being made, and in large enough numbers to be more than tokens? Sometimes I find myself in the position of being the token little old lady consumer on committees and consultations. It is difficult in such circumstances to have much of an impact on others' thinking or on decision-making.
Are the people on committees really consumers who are users or have the potential to need long-term care? Are the consumers familiar with their communities and the needs of the people? Often in the past, boards and committees have sought out people who have had experience in providing service or people with political or financial clout instead of the people for whom the service is intended. There are many informed and articulate people in our communities who are receiving service or who have experienced the way services are provided whose assistance would be invaluable in reforming the system. The service is for the user. His and her involvement in planning is essential.
We have been searching for a definition of "consumer" that could meet the concerns just expressed and which could be incorporated in part II of the bill. Certainly, I think the family care giver belongs in the consumer area.
Consumers must be fully involved at every stage of decision-making: at the government level, district health councils, long-term care committees of DHC, consortiums designing MSA proposals and the MSAs, and in the planning of their own personal care. At least one half of the members of the above groups should be real consumers. Bill 173 does not specifically call for such representation on the MSA or on the DHC.
Canadian Pensioners Concerned has long maintained that since the reform is a bringing together of health and social services, social services should have equal representation at the DHC with health services. This ratio would be continued at all levels of planning.
Will there be real choices as to care, or have we oversold the idea of remaining in our own homes? Many seniors are saying that they prefer other options where the responsibilities of keeping up a home are taken on by others, where nursing care and other help in crises are available around the clock and meals are provided. Will we continue to encourage alternative forms of housing such as group homes, retirement homes, cooperative living, foster care?
What is going to happen to the other programs that our multiservice agencies such as settlement houses provide which fall outside the long-term care list; for example, educational, employment and cultural programs for all ages, and community development? Will these programs continue to be funded and developed? Communities have much anxiety around this question. There is anxiety also about how volunteers will be viewed in the MSAs. Each MSA should have a full-time volunteer coordinator to recruit, train and support and cherish volunteers. There should be appropriate recognition of volunteer effort including reimbursement for out-of-pocket expenses.
Some programs such as Meals on Wheels are listed as services for which fees will be charged. No one must be denied service because of inability to pay that fee.
We applaud the inclusion of a bill of rights in Bill 173. We hope that it will be a means to ensure the consumer's rights to appropriate service, which affirms his or her worth and dignity.
Seniors are often afraid to raise questions, let alone complaints, about their care because this has often resulted in being labelled as difficult or hysterical, being neglected or being punished by restraints both physical and chemical.
A visiting nurse once told me that when she visits patients in their own homes, she goes as a guest. It is their own home and they are in charge of what takes place there. This is very different from the health care facility where the patient is dependent on other people and where other people are in charge of what happens.
Seniors look to long-term care for the independence to make their own decisions and for the sense and dignity and self-worth that such independence brings. Learning how to treat consumers as persons of worth and dignity must be fundamental to every care giver's training.
Nowhere in the bill is there a reference to wellness. The government's statement on health and wellbeing should have preceded all of the planning. We need to reject the old medical model based on sickness and put our emphasis on wellness and the prevention of illness. This will result in a healthier, happier, more productive population and will certainly save money in the long run. Social and recreational programs and programs which break down feelings of loneliness and isolation play important roles in prevention.
Assessment of need for care must be the responsibility of an interdisciplinary team which is sensitive to the needs of the whole person. It is the social worker who will be sensitive to the feelings of isolation and abandonment and to the problems of relationships with family, friends and neighbours. Other professions will have special skills about assessing hearing and sight problems and environmental and accessibility problems in the home. There should be easy access to a variety of professional resources as needed by the assessment team.
Personally, I would want my family doctor involved in any plans for my health care. He literally knows me inside and out and has earned my trust.
While we have raised many concerns about the implementation of long-term care, we do not wish to add to the doom and gloom which surrounds the bill in some communities. Reform of the system is sorely needed. Plans for the development of MSAs are moving forward constructively and confidently in some communities. The obstacles can be overcome if there is a will to do so. There are many concerned citizens and organizations who are willing to work to make reform happen for the benefit of the consumer and in defence of the stated principles. It is too late to turn back. Let's get on with it.
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Mrs Sullivan: There are a couple of things I wanted to address, not the least of which is your concern -- Mrs O'Neill wants to raise it as well -- about representation of the consumer on the board. My sense is that the boards of MSAs will be made up of people who take out a membership in an MSA, and then they are the ones who will vote for the board. I suppose that we've seen takeovers in other areas and there could be a takeover in that area. But that's my understanding of how the boards will function and how people will be appointed to the boards, elected from within the membership of an MSA. Certainly that's the indication that we've had from Ministry of Health officials.
We're told that it's democratic, that it's representative of the community and so on, and I suppose that there would have to be, according to the ministry's criterion, people in certain categories who stand for office. I'll ask for a comment from the ministry after, but it looks as if we'll all have to get our $5 out, doesn't it?
Miss Harman: You're a bit ahead of me because I've not heard of this concept of membership in the MSA or really how the committees will be elected.
Mrs Sullivan: Okay, then the other thing that I think you've pointed out that's very interesting that has been raised by a number of other groups is with respect to the linkages between the facility-based services and those which are in the community and, indeed, what appears to be almost a prejudice for the community-based services. You've raised some of the issues that may mean that, for some people, community-based service or service in the home, while it might be right in some ways, isn't necessarily the right service.
But that linkage between services that are provided from the hospital and those which are provided in the home -- and I suggest the hospital in the home is the one that you raise -- or through other long-term care facilities is problematical in this bill. One of the things that has been suggested is that the services that are offered by facilities be exempted from the 20% outside purchasing limit. I wonder what you think of that.
Miss Harman: The services which are offered by facilities?
Mrs Sullivan: Yes, which might be a hospital in the home or they might be adult day programs or respite care, which are offered now by hospitals or by homes for the aged or other facilities.
Miss Harman: I guess I'm not too keen on purchased services, if that can be avoided. I think in the interim that we're going to have to depend considerably on purchased services. I would like to see services either provided by the hospital or provided by the MSA.
Mrs Sullivan: How do you think they should link up?
Miss Harman: I think there has to be a close linkage. Whether that's done through the DHC -- I expect it should be, because that's the group that has contact with the various levels of care -- we've talked about a continuum of care from prevention to dying, if you like, that those have to be very closely linked. I would agree with you that there's been some sense that everybody's occupying their own corner and that there hasn't been sufficient linkage. If the system's going to work, we have to be able to move back and forth, as necessary, from one kind of care to another.
Mrs Sullivan: I remember when your organization was formed. I think through the years you've had very pertinent briefs on most issues associated with health and other issues. I appreciate the input that you provide.
Mr Jackson: May I call you Mae?
Miss Harman: Sure.
Mr Jackson: Thank you.
Miss Harman: We correspond.
Mr Jackson: Yes, I know we do, and it's a great pleasure to meet you. Mae, I read your brief very quickly first, and then I wanted to listen to you carefully, because this must have been a rather difficult brief to write by virtue of the fact that everybody agrees we should reform long-term care. Everybody, allegedly, participated in some form of input or read documents as long ago as five or six years ago.
But fundamentally there was a significant shift that was caused, and that is not on the issue of one-stop shopping, because we all agree with that, and not that we should coordinate services, because that's still part of the bill, but it's on this fundamental point about who brokers these services.
We are getting considerable feedback from consumers who are concerned that some of the service providers that have been advocating for them up to this point would be lost to the system and moved into some sort of bureaucratic arrangement. A bureaucratic arrangement, by our definition, is one that is less accountable. You're dealing with a civil servant; you're no longer dealing with an independent VON nursing program, where they're advocating for your best interests.
Your brief expressed some concerns, but you didn't really address this notion of the fundamental shift of the brokerage model. You represent a consumer group. We're hearing this mixed message. We're hearing from the providers of the service, "How do you complain to the very agency that delivers the service?" which is the government MSA, or, even though it has its own board and there may be representation, there's no accountability of that board.
So we're starting to hear that one-stop shopping could end up being one-shop stopping, that it is your last chance to get a service, your fundamental right is the right to reject a certain treatment and that there's no real appellant mechanism that has any teeth, especially an appeal where people who are advocating for, in these cases, seniors get a chance to really get in there and roll up their sleeves and advocate.
So could you help me better understand that, because I think we agree on a lot of the things you've raised, but I'm trying to get a sense of your organization on this brokerage.
Miss Harman: Well, I think I'm much more optimistic about the MSA than you are. I don't see it as a bureaucratic government organization; I hope it's going to be a community organization that will be so representative of the community that it is responsible. I'm optimistic that people will have an opportunity to say what kind of care they want, and if the money is available, that they'll get that kind of care. I'm very optimistic about the professional care givers who will function in the MSA.
Mr Jackson: I'll yield in the interest of time, Mr Chairman. Thank you very much.
Ms Margaret H. Harrington (Niagara Falls): I'd like to thank you, Ms Harman, for coming. I think you've brought a good dose of reality to our discussions today. I want to tell you that with regard to supportive housing, because I think that's got a key part in this as well, our government has increased the amount from $50 million to, I believe, $90 million. I think this will be a very good change in communities such as my own. In fact, Friday morning I went to a downtown church in Niagara Falls where they are now going to be building housing for the community, and they are negotiating with the various ministries over the next year as to what the support services should be for that downtown location to actually have a sense of community there that will respond to the actual needs of the people who will be there.
I want to point out and get your reaction also to what you've said on page 2, that many women are the traditional care givers. I think that is self-evident, that everyone should realize what the consequences of this are. I think probably yourself and myself and many other women across this nation have for many years worked to try to give more choices in their lives for women. If this is not done carefully, we are in fact taking away choices for women who have to be care givers. I think we have to be very careful around that point.
The Alzheimer Society raised this as well. They made two recommendations: first of all, that they ensure that care givers are on the boards of the MSA, and secondly, that day care programs are an essential part of this program. Would you agree with those two recommendations?
Miss Harman: Yes, I certainly would. I'm associated with some of the people who give direct care in homes and it's a very hard life. The economic implications are very great, because a lot of women have given up their jobs to look after a loved one and are left living on mother's old age pension or very limited incomes for the household and not being able to get on with their own lives or to get the kind of supports and helps that would make life more livable for them as well as for the patient.
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REGISTERED PRACTICAL NURSES ASSOCIATION OF ONTARIO
The Acting Chair: Our next presentation will be made on behalf of the Registered Practical Nurses Association of Ontario.
Ms Verna Steffler: Being the last on the list and knowing that you're off to London, this presentation will certainly be brief. We don't want to see you speeding down the 401 and getting photographed.
My name is Verna Steffler and I'm the executive director of the Registered Practical Nurses Association of Ontario, which is RPNAO. We used to be known as registered nursing assistants and we used to be known as the Ontario Association of Registered Nursing Assistants. Also with me is Jan Hallett. She is the president-elect of the association.
Practical nurses work in a variety of long-term care settings and, increasingly, in home care. Bill 173 is therefore highly relevant to the members of our profession.
In making this submission, we want to underline how much RPNAO supports the overall objectives of this legislation. For us, Bill 173 is the centrepiece of the government's plans for overhauling Ontario's long-term care system. The critique and questions that follow are meant to be constructive, but our criticisms should not leave you in any doubt about where RPNAO stands. We would like to see a rapid passage and a rapid implementation of Bill 173. Ontario has waited a long time for this piece of legislation and we need to move forward on this.
In fact, before I get to our suggestions for improvement I want to explain how important certain aspects of this reform really are. Take the multiservice agencies, or MSAs. We see these new service delivery agencies as the single most significant aspect of the entire reform, yet in the media reporting on these proceedings, I've heard a lot of criticisms of MSAs -- in fact, today as well.
For example, some groups say that they'll be too bureaucratic or that they'll be unable to attract volunteers. Usually, the critics don't explain why they have these fears; they just raise them as if they were inevitable. RPNAO disagrees with much of the criticism of MSAs that you've been hearing from other people. For example, we don't think MSAs are going to be overbureaucratic. On the contrary, we think MSAs will actually allow the system to operate with less bureaucracy than it does now. The truth is that MSAs have a lot of potential for redirecting resources. This will allow more of the dollars now spent on administration and overhead to go into direct care.
Here's the issue: Ontario's community long-term care system has thousands of agencies involved in service delivery. Some of these agencies offer a single type of service, some employ a single type of professional, but each one of these agencies, no matter how tiny, has an administrator or a supervisor or a director. Each one also has to pay for accounting, rent, heat, light and other overhead costs. Many have to support a board structure as well. All of this costs quite a lot. This fragmentation has produced duplication and gaps in service coverage and has made coordination very difficult. Even though many of these service agencies are very small and by no means flush with cash, too much of their operation revenue goes to administration and too little to the direct service.
Based on a study his firm did a number of years ago, Price Waterhouse consultant Neil Stuart estimated then that as much as 40% of home care spending in our system was going to administrative and overhead costs. Price Waterhouse is currently doing a further study of this issue for the Ontario Senior Citizens' Consumer Alliance for Long-Term Care. I understand that it's showing essentially the same magnitude, even though the results are not yet final and some reanalysis is being done based on more accurate information.
But in a nutshell, the message is that too much is being spent on administration as a proportion of the overall budget.
By contrast, a system based on multiservice agencies promises big savings by consolidating administration and other aspects of overhead. In fact, with MSAs we think case management costs will decrease as well. Here's why: It's true that some people with complicated problems will always need case management even when MSAs are up and running, but at least sometimes case management is provided in our present system not because the case is complex but because the system is complex.
MSAs will help to simplify the system for case managers and consumers alike. The MSAs will make it much simpler for people who need to use the system. Having assessment and many different kinds of services available through one neighbourhood-based organization makes sense. It's far more convenient for clients, not to mention their families. One-stop access to a wide range of service providers means the individual only needs to deal with one organization, one set of rules and one integrated intake and assessment process. Convenience for consumers isn't the only reason to applaud this. The potential economic benefits are also significant.
At any rate, these are some of the reasons why we think MSAs will be much less bureaucratic than the current system, and because a system relying on MSAs will devote fewer resources overall to administration, there will be more funding available for the actual direct service. That's an important point for taxpayers and users of the system to consider.
Another issue raised by some critics is that a unionized workforce will be unreceptive to volunteer service delivery. We question why. If hospitals in Ontario are mainly staffed with unionized workers and yet our hospitals are famous for their volunteer programs, obviously there has to be some agreement with organized labour about what constitutes paid work versus unpaid work. But if hospitals have managed to clarify this, I can't see why MSAs can't either.
RPNAO thinks MSAs will be just as successful as hospitals, provided that they are willing to put resources into recruiting, training and supporting a volunteer program. As for the individual who wants to volunteer, we think the new system will pose no great obstacle. After all, volunteering to provide services to people isn't just motivated by an attraction to the agency's logo or its history and its traditions. Most volunteers simply want to help others, to make a meaningful contribution to their communities. That's what makes the difference, not whether the workforce is unionized and not whether the organization is new or well established.
One of the most contentious issues in Bill 173 is the 20% rule which will put a limit on how much outside service the MSA can purchase for its clientele as opposed to providing the service itself. This clause will make sure that MSAs fundamentally remain service delivery agencies rather than brokers for other agency providers. This provision is a critical one and RPNAO fully supports it.
I'm going now to move on to discuss some specific issues and concerns that we have with Bill 173. I want to run through these fairly quickly in light of the time limits.
First, we want to raise some caution over the broad and sweeping nature of legislation and, in particular, our concern that so many critical issues are not spelled out but will be determined later through regulations.
For example, the bill doesn't even tell us how eligibility will be determined; that's left to the regs. Nor does it tell us what is mandatory with respect to service provision. Nor do we know how the question of user fees will really be handled, although we're glad to find that the bill does put some limits on what can be subject to a user fee.
Similarly, the actual mechanism for funding MSAs is not specified, even though we know that the ministry plans to introduce a regionalized system of envelope funding for long-term care. Although we support this move, we do have concerns about the system's capacity to cope with it. What happens if an MSA spends all its resources prior to the year end? Do they stop all services? Do they lay off staff? Will those in deficit be bailed out? What will happen to the clients?
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We also have two specific concerns about the provisions dealing with clients' rights with respect to their record. The first has to do with the right of clients to see their record. Although we understand the intention of this provision to rebalance the power between clients and providers, we're worried about its consequences. For example, we fear that employees may hesitate to make a chart notation or be tempted into double-charting because of fears that the information could be misunderstood by the client.
Another aspect of concern related to patients' records has to do with the provision allowing clients to request certain changes or corrections be made to the record. Again, we worry that making the record subject to client-initiated changes and corrections may create more problems than it actually solves.
With respect to service access, the bill permits waiting lists and stipulates timely response to client needs. However, the bill does not define what "timely" means, although it does say that regulations may be made to clarify how to determine the relative priority of people waiting for care. It seems to us that timeliness of response is an important indicator of an agency's performance, and one that can be of critical importance to the consumers. We would hope that any quality improvement process would include it as an indicator.
More generally, we wonder why the bill sets out provisions for inspection but is silent on any mechanisms for compliance apart from the liability of a $5,000 fine for being convicted of an offense under the act. For example, regulations under the legislation could define a clear set of performance expectations including, for example, the obligation to measure client satisfaction and other process and outcome indicators. Would it not also be a good idea to link excellence with some kind of monetary bonus? Money may be the root of all evil, but human beings do seem to respond well to positive as well as negative economic incentives. At the very least, we'd like to see a clause added to the list of potential regulations allowing these options.
We also have a concern about the bill of rights set out in section 3. Although we applaud this provision and recognize the importance of making sure that clients are informed of their rights, our real question is, how can respect for these rights actually be enforced?
A related issue for us is the appeals process. Although we were happy to see a time limit imposed on the board to communicate its decision quickly, we think such a highly centralized appeals process will clog up very quickly. Why not consider regionalizing appeals at, say, the district health council level, for example? That would really help facilitate speedy response.
We're also curious about provisions in the bill that would allow communities to have more than one MSA in operation. Are MSAs supposed to compete with one another for clients or is this provision merely to allow certain exceptions; for example, the possibility of permitting an additional MSA to operate, one that might specialize in serving a specific ethnic group? We had assumed that the ministry's overall intention was to give each MSA an exclusive jurisdiction with a given geographic boundary. The bill does not seem to make this very clear.
With respect to governance, we were rather surprised to find that the bill makes no specific mention of consumer participation. This is really curious given the strong leadership shown by consumer organizations in this province in helping to shape long-term care reform. We support the idea that employees cannot be board members of the organization that employs them and we agree that the ministry should consider board members' experience in health and social services in naming approved agencies. Still, we think more emphasis on consumer and family member participation on MSA boards should be reflected in the bill.
We were also somewhat disappointed to find that the role of primary care, and especially that of the role of the family doctor, has been completely ignored in the bill. As the lady previously said, they seem to know us all inside and out. Much has been written about the need for better communication and coordination between primary care providers and those working in long-term care, and yet the legislation makes no provision for these issues so important to continuity of care and client safety.
As our final concern, we want to draw your attention to the fact that this bill provides for a four-year transition period to move from the system we have now to the one envisioned in this legislation. Frankly, we think this is just too long and so we would urge members of the committee to consider cutting the transition period to no more than two years.
Ontario has already been waiting a very long time for this legislation. The $647 million in additional funding was first promised four years ago. Today that money is worth less because of inflation; its purchasing power has shrunk. That's one of the main reasons why waiting four more years strikes us as too long. But there's another.
We're worried that confidence in the long-term care reform will erode if things don't move along more quickly. Besides, we suspect a faster timetable could be managed. All across Canada health care systems are being transformed and restructured. In some cases the changes seem to be occurring almost overnight. Saskatchewan regionalized their entire health care system in the space of one year. New Brunswick regionalized their hospital system virtually overnight. Surely Ontario could put on a bit more speed. The sooner we move to implementing these changes, the sooner our citizens will reap the benefits.
I want to thank you all for your attention. If you have any questions, we'll answer them if we have the answers.
Mrs O'Neill: Thank you very much for your brief. I know you are front-line workers, and that's always helpful. You have a number of serious concerns, though, and then I have a little bit of trouble juxtaposing that with the speed with which you want to proceed. I feel that many of them have been brought forward. I think the one that's very close to our hearts and to yours is the funding issue. I would like to have the parliamentary assistant respond to your questions about funding, about the regionalized system of funding that's proposed and how this mechanism will actually work. Will there still be municipal participation in the funding? Will there not? How will the capping affect? Will there be staff layoffs if the budgeting isn't done well by the board? Those are very important questions. You've raised them.
Certainly, the people you represent, their jobs depend on them in some very important way. So perhaps the paragraph on funding could be responded to by the parliamentary assistant.
Mr Wessenger: I'll ask Mr Quirt to give a response to that question as set out in your brief.
Mr Quirt: The envelope funding system that we've consulted with DHCs about and have used to allocate our supportive housing planning targets -- each DHC involves looking at factors like population and age in communities to determine, using those criteria, the fair share of available resources that a particular community might have to work with in long-term care. Soon we hope to be indicating to district health councils planning targets for the entire long-term care budget. We will be asking district health councils to give the minister recommendations on how the existing money and the new long-term care reform money should be spent in their community.
In other words, they'd take a look at that envelope and recommend to the minister that two new supportive housing programs should be started or one existing program for physically disabled people should be expanded and that there be, just for example, four MSAs and that the budget for them should be so much and so on.
You've raised the point about what happens if money runs out halfway through the year. Clearly, the plan is to allow local communities to plan on how a finite amount of resources is best spent in their community. In developing the contract between multiservice agencies and the government we'd want to make sure that there were contingencies included there for fluctuations in service demand and so on. Our staff would be monitoring the budgets of those programs.
If in July it looked like there was a major problem, we'd be talking with the agency and saying, "Look, what are your plans to make sure that your services are allocated properly throughout the whole year?" Of course, we do that now: The majority of our programs have a finite budget and we certainly haven't had any of them shut down in December or January for lack of money. We hope to help them manage their resources for the period of the time that the funding is designed to cover.
Ms Harrington: Thank you very much for your presentation. I noted that on page 2 you made two very strong points, and that was that this system would actually save significantly on administration costs, and you reiterated that and emphasized that, and secondly, that the volunteer aspect is very important and that this legislation is concerned about that. We certainly want to encourage that and can see no reason why that wouldn't proceed. I thank you very much for making those points; I'm just sorry that Mr Jackson didn't hear them.
On page 4 you talk about consumer participation and I think that is important. I want to ask the parliamentary assistant the nature of consumer participation on the boards as he or the ministry would envisage it.
Mr Wessenger: It's certainly the intention to have consumer representation on the board, and we're interested in how to define "consumer." The way we anticipate that will be achieved is through the supervision we have with respect to the MSA's bylaws. In other words, we'll try to ensure that the form of bylaws that are developed will ensure that consumers are represented on the board.
Ms Harrington: Would it be fair to say that you can assure us and the presenter today that it wouldn't be just tokenism?
Mr Wessenger: Yes, definitely not tokenism. We said already a minimum of a third in our policy and certainly we're interested in --
Ms Harrington: I would ask our presenter to comment on that.
Ms Steffler: I guess my concern is how you define consumerism, because every one of us is a consumer. At some point in time, we are a consumer of the care. But we don't want to find that we end up with these MSA boards being made up of politicians, local representatives from local parliaments, governments, from the professions themselves, because then they become more of a bureaucracy and they are not paying attention to the people. If you're saying to me that one third of the MSA boards are going to be made up of consumers, I can go with that, but just make sure you define what is meant by a consumer.
Mr Wessenger: Thank you very much. I agree with you and we certainly agree with you that the consumer will be defined in a narrower concept to ensure that --
Ms Steffler: I think the idea, when you say a third, is much better than the lady previously saying about so many times being the token one individual, which I certainly concur with. That's totally not appropriate, to put one person there and say, "Now you're going to represent the whole community as a consumer."
The Acting Chair: Thank you for your presentation. That concludes our hearings this morning. The committee stands adjourned until 6 o'clock this evening in London.
The committee recessed from 1313 to 1802 and resumed in the London Convention Centre, London.
The Chair: I'm not sure whether to say good evening or a late good afternoon, but we're delighted to be here in London, where we will be conducting hearings both this evening and tomorrow.
MED-CARE HEALTH SERVICES
The Chair: Without further ado, I would invite Mary Jo Dunlop, the vice-president of the Med-Care partnership, to come forward and give her presentation.
Ms Dunlop, we have a copy of your statement in front of us. Please go ahead. If I might just say at the outset, we have a very full agenda both tonight and tomorrow, so in most instances we will probably only be able to get to one questioner, but we want to make sure to hear all of your presentations.
Ms Mary Jo Dunlop: Thank you. Good evening. My name is Mary Jo Dunlop and I'm the vice-president and chief operating officer of Med-Care Health Services. Med-Care Health Services is currently the third-largest home health care company in Ontario and a provider of nursing and homemaking services to the Middlesex-London, Elgin-St Thomas and Oxford county home care programs.
While everyone supports changes in the health care system that are beneficial to the people in our community, Med-Care community health care providers believe there are many excellent features in the current local community-based services provided; that while the focus appears to involve disassembling and then reassembling community health services in another form, there is a sufficient existing base from which the minister, the district health council and the multiservice agency can realize the very valuable single access point; that we also believe there is always an opportunity to reduce fragmentation, as fragmentation is created as a result of the way in which program funding has to be utilized and has little to do with the attitudes of the gatekeepers of those funds or with the availability of services.
Service providers, whether individuals or companies, have been providing and continue to provide services in response to the needs of their community if their participation is allowed. Restricting providers outside the MSA will not guarantee service will be any more flexible or less fragmented. This legislation proposes an unnecessary transition from our existing community health framework to that proposed.
The need is for communication throughout the system, as clients and workers are remote and clients have increasing needs normally dictating more than one service. It is well acknowledged that the MSA will need to continue to form linkages with other providers of care outside the core services provided by the MSA.
Home care programs, agencies, individuals, community health physicians and hospitals and many more have consistently come together to successfully problem-solve on behalf of individuals requiring care. By virtue of the fact that our organizational and management styles are different, our combined ability to creatively problem-solve was enhanced. All the professional resources to form solutions for our community have always been available and the willingness of the parties has long been apparent. It is the lack of flexibility within the programs that has sometimes necessitated adding the support of other programs offered by other funded organizations or charities, or forced a burden on families, and it is that which has led to the frustration on the part of the consumer.
The multiservice agency and the district health council therefore have the opportunity now to eliminate some of the barriers to seamless service and need to be given the right to determine the best way of providing the required services to their communities, and by whatever method they feel best manages the intricate balance of funding and need. Their great continuing challenge will be to manage those limited resources where there is no limit on the need or the expectation of the consumer. Consumers have long voiced their disdain at the idea of waiting lists for services.
Educating employees of the multiservice agency through this transition to new program and funding guidelines, and having available knowledgeable staff at the single-access point, will be critical to the success of the reform and a challenge to those who undertake it. Information systems for education and the communication of information must be developed and in place once regulations are definite, in order for MSA staff to successfully accommodate the needs of the community.
For the hands-on care givers, educational requirements in community health professions must be finalized. Where there are thousands of homemakers who have willingly participated in level 2 upgrading within the last four years at the request of their employers, they now anxiously face another challenge in their uncertain future as they compete with graduates of yet another program for jobs. Current employers are trying to access funding for employee training, ascertain which program and, in the end, they're training their employee for the approved agency and not their own.
As professional as our employees are, they are affected by the stress they're experiencing. Community clients have already felt the impact of the change, just as patients in hospitals have, as they are cared for by workers who face an uncertain future. Some clients have had to endure a change in worker when some employees of commercial agencies fled to not-for-profit employers, hoping to find job security, only to realize later that there are no safe havens in community health. Relationship changes are always strenuous, but those between care giver and care recipient more so, as it is a very intimate relationship. Workers don't experience the job security of the past. Then they were in control. Their performance dictated not only their professional success, but their personal pride, and it also reflected the overall quality and professionalism of the agency's service.
Each employee knew it was an earned privilege to be able to provide service to the community, and therefore, if every member of the group did their job well, they were working towards securing for themselves continued work in the community. Workers who have given up a great deal to return to college in midlife, often never having attended college before, to secure a future with their agency, are discouraged and frustrated.
Med-Care is a London company, started here 12 years ago by a nurse, Judy Bishop, whose love of community health and vision of its future contributed greatly to a very successful combination of quality service provision, a quality work environment and good business. Over 12 years, Med-Care has expanded to 10 Ontario cities, always maintaining its head office in London. In London alone, Med-Care employs over 350 nurses and homemakers and 35 office staff, with another 150 in neighbouring St Thomas and 90 in Woodstock.
Because the majority of service our company provides in London is to the clients of the home care program, most of these individuals depend on that business segment for their livelihood. Of these 625 employees, 95% are women, some the sole source of income for their family. They have chosen to work for Med-Care for a number of reasons, but one of the most appealing employment conditions is the conduciveness to family life.
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A usual employee is 35 years old, female, with one or more school-aged children. The ability to schedule her work hours in a flexible manner, which allows her to successfully combine continuing education, family and a professional career, is a much-sought-after feature, a feature she will be forced to forfeit working within an MSA. While there has been expressed a genuine concern for the employees who are currently working for the commercial agencies, it is unlikely that the system would be able to support the number of employees who are currently involved in service provision through commercial agencies.
Our nurses and homemakers and those of our competitors, both commercial and not-for-profit, have gained excellent reputations for the care they provide to the people of their communities. A strong contributing factor is the employee's or volunteer's association with an organization that has a clear vision, mission and philosophy, creating an organizational culture with which the employee or volunteer can identify.
Today, these people suffer from fear and frustration: fear because they don't know their part in the future or understand the future employer; frustration because they resent the upheaval. They are proud of their achievements within their own organizations and had future goals towards which they were working. They possess their own personal and professional goals they want to realize within their current organization. They see opportunities for advancement dwindle as they are absorbed, if they are absorbed, into a much larger agency. Many have expressed how truly heartbroken they are that this change is being forced upon them, and there are some who have already given up and left the field instead of facing the future, and that is our loss. To destroy relationships only to attempt to recreate them in the future appears without purpose.
Med-Care strongly urges this committee to acknowledge the expertise of these home care programs, social service departments, long-term care facilities and community agencies that have very successfully served these communities in spite of the restrictions imposed upon them by the system.
This committee should be insisting that an MSA, as advised by the district health council, choose the most effective means of providing care for its community, that expenditures for direct care be monitored and evaluated and providers have an incentive to deliver cost-effective services.
We recommend provincial and/or national standards applying to all aspects of client services, as we believe this would guarantee quality and reassure the MSA and the taxpayers, ie, the people, that they can expect a certain level of service no matter who is the care delivery agent. This way, eliminating outside providers and direct employment is not necessary, nor is it desirable, because while the legislation appears to enhance flexibility and funding, it is actually reducing the number of options for creative provision of care.
Mr Ron Eddy (Brant-Haldimand): Thank you for your presentation. It's most informative and helpful. I note that you have several concerns about the legislation, and you've set those out and really stated that the new system won't really guarantee badly needed services that are presently in use, and also concerns about the employees.
Would you elaborate on how you feel about the new system compared to what we have now, with emphasis on: Would you rather proceed to improve what we've got now or would you rather take the MSA system that's proposed and have some of the safeguards built in that you've stressed in your presentation?
Ms Dunlop: I confirm I would rather that we take the expertise that's already established. I think that in the hearings you have heard a lot of horror stories. If we could ever measure what percentage those represent, I think you would find that it's very small. Personally, I've been involved for eight years in community health. I know that we have been forced to change and to adapt to the needs of the clients in the community and that generally it's gone very, very well. Why we have to disrupt that to create something new I don't know. I think that there's a tremendous base with the home care programs on which to build, and there are people who are absolutely willing to work together to do that.
So, in a very light term, we're throwing out the baby with the bathwater. We should build on what is existing, because there is a tremendous capacity for it to work.
Mr Eddy: Thank you for your explanation and for your service.
COUNTY OF LAMBTON
The Chair: I call on the county of Lambton representatives. Just so those who are here know the order, after the county of Lambton will be the Golden Years Advisory Committee for Schizophrenia and then the Waiting With Concern Committee following.
Welcome to the committee. I'm glad that you could join us this evening. Once you're settled, if you would be good enough just to introduce yourselves and then please go ahead with your presentation.
Mr Jim Foubister: Thank you very much. Mr Beer, members of the standing committee on social development, this is with respect to Bill 173, An Act respecting Long-Term Care. I'd like to first introduce my colleagues and myself for this presentation.
My name is Jim Foubister. I'm chairman of the health and social services committee for the county of Lambton and I'm also an alderman in the city of Sarnia. Mrs Penny Phillips is here with us. She is the vice-chairman of the health and social services committee for the county of Lambton and is the mayor of Brooke township. Also with us, and who will be assisting me in the presentation, is Mrs Elizabeth Tenhoeve, a member of our health and social services committee for the county of Lambton, and Elizabeth is the mayor of Plympton township. Also with us, from a staff standpoint, is Mr Doug Hutton. Doug is our director of social services for the county of Lambton. Mrs Vicky Lucas is the acting administrator of Marshall Gowland Manor, Sarnia, Ontario, and Mrs Deborah Clarke is the acting assistant administrator for Lambton Meadowview Villa in Petrolia, Ontario.
Firstly, of course, we would like to take this opportunity to thank the committee for allowing the county of Lambton to make a presentation and express our concerns with respect to Bill 173. We in Lambton county certainly recognize reforming the health sector in long-term care is overdue and we have strong feelings on this issue. The care of our elderly is second to none in Ontario.
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We in Lambton county have recognized that care costs money and we have always strived to maximize those scarce resources. We have a long history, as do most counties in Ontario, evolving from the British workhouse of refuge. This history was initiated in Lambton in 1919, with Lambton Twilight Haven opening in 1956, Marshall Gowland Manor in 1968 and the North Lambton Rest Home in 1970, and we have numerous outreach programs within the county's structure.
Mrs Tenhoeve will be assisting me in presenting the brief. We have additional copies available for everybody, and we will try to answer any questions you might have at the conclusion.
Let me begin by applauding the government for recognizing and acting on the need for long-term care reform. We feel it is crucial to retain the inherent good qualities of our non-profit facilities and community services by affirming the county of Lambton's full support for the main principles driving redirection, which are the primacy of the individual and his or her right to a life of dignity, security and self-determination; the promotion of racial equality and respect for cultural and regional diversity; the importance of the family in the community; and equal access to all health services.
We believe that the county of Lambton is the proper body to be responsible for ensuring the delivery of both community-based and institutional long-term care services for seniors in our area. We would do this in partnership with a local board of directors and with ministry support that provides clear leadership and performance standards.
We have brought with us, as I mentioned, copies of our presentation for your future reference and certainly would hope to be able to answer any questions you have.
We believe it is very important that your committee know something of the recent history of the county of Lambton's long-term care programs and services.
In the mid-1980s, a consultant's study was done for the county that recommended the sale of one of our homes for the aged, North Lambton Rest Home in Forest. When the results of the study were made public, council was somewhat surprised at the depth of feeling among county taxpayers that the ownership and operation of North Lambton Rest Home in Forest remain with the county of Lambton. The sale did not take place, and North Lambton Rest Home has subsequently had a $1.6-million addition.
That event may have been the turning point -- let me rephrase that. That event was the turning point that stimulated this council into being one of the most innovative, interested and capable in Ontario on seniors' issues and their care.
Consequently, in June 1993 we opened a new 125-bed facility in Petrolia, Lambton Meadowview Villa. This was a joint venture with the province at an estimated cost of $16.4 million.
Our third county home is a 126-bed facility in the city of Sarnia which is presently awaiting a renovation upgrade. Marshall Gowland Manor was acquired by the county through Bill 35, which amalgamated the city of Sarnia's health and social services within the county structure.
Besides the three long-term care facilities, we also operate three community support programs: in Forest, a North Lambton outreach; in the city of Sarnia, a Marshall Gowland Manor outreach; and in Petrolia, a state-of-the-art Alzheimer day program.
As far back as 1988, prior to long-term care reform, a consultant's study recommended a central 1-800 number to meet Lambton county's community support needs. Still today we believe this would best utilize dollars available while at the same time meeting the community's needs for single access and eliminating the additional bureaucracy of a multiservice agency -- in essence 911 for the seniors in Lambton county.
As we sit here today, we cannot emphasize too much the importance of the positive relationship between our council and the seniors in the county of Lambton. They have come to depend upon us to know their needs relating to high-quality programs and services. Further, the Lambton county community relies on us to act as facilitators and provide leadership in the delivery and implementation of health services.
I would now like to turn our presentation over to Elizabeth Tenhoeve, the mayor of Plimpton, to bring forth the points as we identify them within Bill 173.
Mrs Elizabeth Tenhoeve: Although there are many areas of concern with this legislation, we will address only five major points. We'll begin with the purposes of the act.
First is "to promote the efficient management of human, financial and other resources involved in the delivery of community services." We question how efficient this new bureaucratic system will become without healthy competition which forces cost-effective administration and creativity in providing a quality service.
As an example, we draw your attention to what has happened to the acute care system in our hospitals over the years without healthy competition. We don't need to tell you we cannot afford the same thing to happen with community support services. Healthy competition is good. Free enterprise and freedom of choice is part of what our democratic society has been built upon.
A second purpose is "to encourage local community involvement in planning, coordinating, integrating, managing and delivering community services." It is difficult to determine from the act how you're encouraging community involvement in managing and delivering the service. Any reference to community and consumer input is vague and not clearly defined.
For example, the county is pleased that the ministry is identifying volunteers in the new regulations it's developing, but we have a concern as to what the new MSA as proposed by this legislation will do to the volunteer base already established in Lambton county's community service programs. The proposed MSA will take away a volunteer's choice to support their favourite non-profit agency and the people who operate it. Volunteers have repeatedly stated this fact.
As a second example, a centralized bureaucratic control which has the ability to assess a client's need, determine eligibility and also provide the service is not only considered a conflict of interest by us but is also unacceptably limiting a client's ability to purchase the goods and services judged appropriate by himself or herself.
As a third example, the appeals process established by this legislation appears to be the only resource for an unsatisfied MSA client. This process is likely to appear intimidating and daunting to the average senior. It will inevitably add considerable time, cost and stress to the overall effort to find appropriate services for a senior and family, who may be aggravated by the wait for a decision or, more importantly, may never see services because the window of opportunity may pass while awaiting an appeal decision.
In conclusion, while we support these purposes of the act, we feel that the legislation lacks substance to support these statements.
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For our second point, provincial control, regulations, while we agree with single and equal access for community-based services and we understand mechanisms will be put in place to ensure quality and efficiency through regulations, we are concerned that this draft legislation is leaving too much interpretation to the regulations, which have as yet not been written.
We fear this legislation may produce a highly bureaucratic, overregulated system for community health services that the province may not be able to afford. Bill 173 doesn't guarantee that better or more efficient community services will be provided than those presently in place.
We feel strongly that Lambton county has effective and efficient community services currently in place and caution the province not to throw the baby out with the bathwater. Rather, we'd like to see the legislation enhance good community services by reducing fragmentation and simplifying access to long-term care services. We do not feel this requires such sweeping changes as outlined in Bill 173.
Our third point concerns funding issues. Cost projections for this new improved health care system have not been made available to the public. It concerns us, following the experience with Bill 101, that the province may discover after the fact that we are unable to afford this community-based health care system. It is our experience that many community-based services are currently operating on a shoestring with contributions from user fees, volunteers, donations and individual fund-raising efforts as well as additional funding bodies such as United Way and municipalities. To make unilateral decisions for funding these programs without consultation with existing community agencies or their funding partners is jeopardizing continued support from these bodies. Our concern is that without these additional funds, this legislation may prove to be too expensive and less efficient.
Our fourth point is the MSA board composition. Multiservice agencies will have the power to assess taxpayers' needs, determine eligibility and then provide 80% of the services. The county of Lambton perceives this as a conflict of interest. In a democratic society, this bill, as presented, will be removing or limiting any choice alternatives available to the taxpayer. It appears that the only option for a client would be to appeal a decision to the ministry. Again we question, how many busy family members or seniors will be able to take the time or have the resources to challenge this cumbersome and threatening appeal process?
The MSA board composition is outlined but it fails to define the selection process for the board. The county of Lambton questions the accountability of the selection process of the MSA board which is to serve our taxpayers. The amendment in this legislation to the Ministry of Health Act identifies an appointment process to the district health council board. We find the statement in the legislation, "shall consider the importance of ensuring that the membership of the district health council reflects the diversity of the population in the council's geographic area," to be very vague, offering little assurance to the general public that they've been well represented.
There is only one way to assure accountability, and that's by utilizing the democratic process and ensuring a single board of directors, elected by voting members, as stated in your response from your paper Implementation and Program: Questions and Answers, Ministry of Health, June 6, 1994. We agree with this statement; however, question who the voting members will be.
Secondly, may we point out this statement seems incongruent with the legislation, which states, "The minister may designate an approved agency as a multiservice agency for a specified geographic area." It concerns us greatly that a single agency becoming the MSA could create a bureaucratic monopoly which may be disastrous for community health services and too costly a burden for our taxpayers.
Mr Foubister: Our final point, Mr Beer and members of the committee, is, could you explain why municipalities and boards of health have been identified in the legislation as the last-resort choices to be the MSA when the infrastructure is already in place to provide geographically, furnished office locations, payroll and personnel functions, along with many other aspects of the MSA, throughout the whole county of Lambton?
We ask you to consider the major commitments of time, money and resources given to seniors throughout Ontario by municipalities. It seems illogical that the minister would consider the suitability of all other approved agencies before a municipality or a board of health.
We have five recommendations for the minister to consider:
(1) We ask you to reconsider your position that municipalities will be the agency of last choice to become the MSA. Lambton county already has the infrastructure in place, requiring only modifications to operate the MSA organization efficiently in our area. We recommend the minister address this specifically in the legislation.
(2) We recognize the MSA board composition is a concern for the ministry, as it is for Lambton county. The MSA board selection process needs to be specified in the legislation, as you have for district health councils. We recommend a blended board with representation from elected individuals, consumers and service providers. It should include individuals reflective of the community it serves in respect to its cultural, ethnic, linguistic and spiritual factors. We feel the county of Lambton is the most accountable body to ensure a blended board is elected by a democratic process and reflective of the public it serves.
(3) The legislation identifies that one agency can become the MSA. It is our opinion, in striving for a new culture, no existing agency has a community-reflective board which is truly accountable to the general population in Lambton county. We recommend the ministry strive for this new culture by legislating new community-reflective boards of directors, which will be accountable to the MSA and the community it serves.
(4) The minister's consultation process has been fast-tracked over the summer months. We feel that this is a poor time to be educating consumers, interest groups and the general public regarding the dramatic changes to the long-term care system. We recommend you extend the consultation process. During this extension of time, we would like to see service projections, cost expectations and efforts to identify and consult with other possible funding contributors. This information should be made public and used to ensure this proposed system will be affordable.
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(5) Alternatively, a cost-effective, easily implemented approach to revise the long-term care system could be to activate a 1-800 single-access coordinating body. This body would ensure universal access, consumer input and could reduce duplication and fragmentation of services without total disruption of community support services.
Finally, we believe most emphatically that the county of Lambton is the most appropriate body to govern the delivery of high-quality term care to its seniors. This body has historically provided responsible control over budgeting and operations as a result of its direct responsibility to its local citizens.
County councillors, as elected representatives, are ultimately responsible to the taxpayers, and we must raise this money by putting our hands in the pockets of home owners in Lambton county. We must therefore have the ability to govern care and services delivered at a local level. Centralizing these controls at Queen's Park with a larger bureaucracy and its attendant lengthy and complicated appeals process is wrong. We do not have all the answers, but we have a history of partnership with senior government providing the seniors of Lambton county with a premium health care service.
Mr Chairman, we thank you and the committee members for your diligent consideration. We are sure that you will give these important matters, matters that will have a profound effect on the elderly of the province of Ontario for many years to come, your utmost attention. Believe me, we wish you well in your ongoing deliberations.
The Chair: Thank you very much for your submission. Just before turning the questioning over to Mr Jackson, as you were describing your homes, I was taken back I think four years just about now, when the extension on the North Lambton home was opened. I had the pleasure of being there and seeing it, and it was a lovely addition. I'm sure that it's been well serving the residents ever since. But I recall that day, which was very, very close to the end of the tenure of a certain government.
Mr Foubister: Yes.
The Chair: I enjoyed that. It gave me something to --
Interjections.
Mr Foubister: It's still serving the county residents very well.
The Chair: However, enough of that political talk.
Mr Jim Wilson: Put a plug in.
The Chair: It was an enjoyable day; we had fun.
Mr Jackson: I appreciate your brief. Your brief actually conveys in very clear terms a lot of concerns that were expressed by Metro Toronto and by AMO earlier today in Toronto.
My first question was going to be, when I listen to you I get the sense we really don't need this legislation. If the government simply set out a policy guideline giving you the challenge, you probably could come up with a version of an MSA which could be well managed by the county services. However, that's too easy a question.
So I thought maybe what I'd do is pursue the notion of elected boards, because it's one of the five areas that you choose on and a theme that is gaining more concern at these public hearings is the elected nature or the lack of accountability and its spinoffs, which are the ability of individuals to complain to the actual agency that's serving them, which is a government agency. So either appeal or go to the Ombudsman, who'll tell you there's no way you can appeal it.
My question then has to do with, if you structured your MSA locally and you had a provision for people to get elected to those positions, how would you feel about that democratic process being overridden by any government which says, "In our opinion, a democratically elected board doesn't fit our criteria and therefore those democratically elected individuals cannot serve and we're going to put some other people in their place"? That provision exists in this legislation.
Mr Foubister: I guess in answer to your second question, I would sooner have the first one because it was much easier, you're right. I guess I would have to see the reasons behind why a government would take the position that an elected board would not properly serve the function. We feel that accountability is the largest part of that question and that is why we would promote the election of, if not all of the board, at least a situation that would probably be better than that which exists in the police service.
Mr Jackson: I couldn't agree with you more on that.
Mr Foubister: I would far sooner that there was much more election in that respect too, but we're not here to talk about that.
But if you would allow me to touch a bit on your first question, yes, we'd be ready, willing and able in Lambton county to attack that question of setting up an MSA of our own. We'd be more than willing.
The Chair: Thank you. I regret again that because of the number of presenters this evening -- I know there are more questions -- we'll have to end there. But we really appreciate your taking the time and coming down and making your presentation before the committee.
Mr Foubister: We thank you, Mr Chairman, and also all the members of the committee. Again, as I said, sincerely, we wish you well in your deliberations.
GOLDEN YEARS ADVISORY COMMITTEE FOR SCHIZOPHRENIA
The Chair: I call upon the Golden Years Advisory Committee for Schizophrenia. Welcome to the committee.
Mrs Martha Jean Noble: I'm Martha Jean Noble, chairperson of the Golden Years Advisory Committee for Schizophrenia. We're a small group, just four or five families, but we're all seniors. I'm also a family care giver. I want to thank the Honourable Charles Beer and board members for giving us the opportunity to express our needs as senior family care givers in chronic long-term mental disease.
What is schizophrenia? Schizophrenia is not a rare disease. As far back in history as 3000 BC, scholars have found descriptions of people with similar symptoms. Schizophrenia is not generally accepted, not as the product of modern civilization, but one which has been with us throughout history. Schizophrenia is a very destructive illness, most common in young people between the ages of 14 and 28. It was not until neurology became interested in the higher functioning of the brain that real progress was made. Research has proven again and again that schizophrenia is a biochemical disorder in the brain.
As recently as 20 years ago, the diagnosis of schizophrenia often meant lengthy institutionalization. Due to this lengthy stay, many young people with this disease lost their individual independence, their ability to work, and some, at an early age, had their education ended. The disease schizophrenia is worse in some than in others. This horrible disease affects approximately 1% of the population, in every social class, in all countries. It is thought that about 30% have a remission and will function quite normally in the community. They will be employed, they will marry and have children and appear to contribute to society.
Of the remaining number, some will be helped by drug therapy, some will learn to cope. It is this category that we believe has the highest suicide rate. Statistics tell us that one in every 10 will commit suicide. Because their disease is more troublesome, they will not only need medication but will need financial support and individual housing for the rest of their lives. We know that in time the disease becomes less troublesome in some, but there is one in every 300 who is not as fortunate and these young people suffer from some form of brain damage. To quote Dr Barry Jones, director of the schizophrenia program, "We have an illness that was so devastating that we were forced to give medication that did harm." This was said at a Toronto news conference. Enclosed is a copy of that media release.
To have a chronically mentally ill loved one is indescribably painful. There is no illness that causes more distress or anguish than this horrible disease. The fact that the disease is chronic and there is no end to the delusions and hallucinations and the loss of judgement and loss of ability to plan and function in society places a very heavy burden on the family, both financially and emotionally.
People suffering from schizophrenia may have difficulty in knowing where reality ends and insanity begins. Many people suffering from this disease are highly intelligent, artistic and very sensitive, but they are often rejected by friends and neglected by exhausted relatives and shunned by society.
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Forty million families around the world know what it is to love a relative with schizophrenia. That's 40 million families, not people, and if each family consists of four members, then there are 160 million people caught up in the biological disaster known as schizophrenia. I've enclosed a pamphlet on that too.
In the late 1960s and early 1970s, the institutions for the mentally ill downsized. At that time, the hospital turned them away after a brief stay. These young people were too sick for group homes, and we were told that with our daughter; she was not group home material. So she came home for maybe two weeks, went back to the hospital for about three months, came back home again, until we were utterly exhausted. That would be two weeks, night and day, you looked after her, and she went back again.
That was our horror story of the first introduction to schizophrenia. So when we say that the hospitals turned them away after a brief stay, these young people were too sick for group homes or independent living. They had no choice but to return home to their families, with little or no discharge planning. Many that didn't return home to families wandered the streets half-starving. Some froze to death. Many others were badly abused by society and the system. Due to unforeseen circumstances, some became involved with the law.
From the universities and colleges came some of our siblings, very ill and frightened, to share with mothers and fathers their desperate need for survival. After all these many years, our sons and daughters not only suffer from schizophrenia but are socially handicapped and emotionally deprived. I believe there is a press release there from Elizabeth Plummer from the Clarke Institute that states that.
Our home became their small institution where they felt safe and secure and tried to gain some control over their lives. However, the prison system has failed to recognize the crisis of these families who are now senior citizens. We will die on you soon. We must now make plans for when we will no longer be here to care for these now middle-aged siblings that have no home but ours, no in-home care unless we pay for it, very little social therapy and no tomorrow after we are gone unless the government will reward us for our many years of unpaid service by implementing immediate planning for individual assessments and supportive housing that meets the individual needs.
I want to impress upon this board the necessity of discharge planning and community follow-up. We must be the last generation to suffer the abuse of long-term neglect. We must take note of the abuse and hardship that is now apparent in senior families that have cared for sick siblings for many years. The majority of these families now suffer poor physical health and are facing the shortage of time.
We would also like to remind the government that we are special families. For many years we have given hope and around-the-clock nursing when needed. We have given love and encouragement on the better days. A vast number of families have given up many a holiday together and settled for separate vacations because of the lack of respite beds. The only alternative was to hospitalize them. We did that twice in 22 years, but it was so devastating for her that we never did it again.
Homes for special care receive a daily rate per person; also a $3,000-a-year respite allowance. Why do the families not receive the same consideration? We need a maintenance allowance. We feel a maintenance allowance is long overdue. The need to remain a family unit is important for the wellbeing of the sibling, but the financial burden is overwhelming and impossible for some.
We have carried the burden of care with very little support from the government, and we must now speak of the special families that have given so much. We are the unpaid servants of the government. We are the families that face the stigma, the never-ending nursing care, the responsibility of providing supportive housing in our homes and also financial and spiritual guidance. We are the ever-present legal and trusted family that makes the successful link between the sibling and the doctor.
We know that an estimated two thirds of patients discharged from mental hospitals return to their families. In addition, there's an increasing number that rely only on their family physician, making an unknown number living at home with senior parents. The Ministry of Community and Social Services fact sheet enclosed is on a trust fund for people with disabilities. It's a fund for people with disabilities receiving family benefits effective August 1, 1993.
We are greatly impressed with the present modern inheritance trust of $65,000 for disability-related items, but we are also deeply concerned that there is no reference as to the spiritual need of these disabled family members. At this time we would like to suggest that the church of our choice be approached for volunteers, approximately two persons per person, and the educational expenses become part of the inheritance package. It is our hope that the inheritance trust will become a spiritual and financial success, enabling a richer and more rewarding life for our siblings after we are gone. We will need the blessings of the church and the guidance of the government to achieve this goal. If we work as partners we will all have a better tomorrow.
The purpose of the Golden Years Advisory Committee for Schizophrenia is to establish the needs for siblings suffering from long-term mental disease, the needs being respite care, in-home care, socialization, supportive housing and individual care, spiritual guidance in the church of your choice and inheritance protection; to have schizophrenia removed from mental health to long-term care; to make the government aware of the families that care for siblings suffering from mental disease; to improve the wellbeing and lifestyle of siblings suffering from long-term mental disease -- it's not by their choice that they have it and it is only by the grace of God that it's not one of your children; to bring to the government's attention the crisis that is facing the senior citizens who are running out of time, and therefore immediate planning is necessary.
Our objectives are to write letters and petition the government, the Ministry of Health or the Premier of Ontario to make them aware of the crisis faced by senior citizens caring for siblings suffering from schizophrenia. Public awareness: letters to editors, display booths, flyers, newsletters, radio interviews; to meet with district health councils or the Ministry of Health, community mental health and Grey-Bruce mental health. I might say at this board that that's been a very hard and trying time for us; very hard. The stigma in the rural areas is very pronounced. We want to have a pilot project to assess the benefit of in-home care, attendant care. We did that too and that proved to be very successful. We've paid for it ourselves several times now. Instead of sending our daughter back to the hospital, we simply have a nursing agency come in and she provides the care that we need. I might say the last one was $1,400 but they changed her drug to risperidone and it's been a big success. But we did not have to hospitalize her through that, and that was great for her and great for us too.
We want to work closely with council and non-profit housing to establish independent living with in-home care; to work with the government to change the system of inheritance distribution; to impress upon the government the need not only for the physical and mental care but the need for spiritual care in the future planning for our siblings.
Then I have a list here of the literature, and I won't take up your time, that I sent along to verify whatever I have given you.
The Chair: Thank you very much, Mrs Noble. If I recall, you also came down from Owen Sound the last time we were here, although that was a much colder and snowier night. So we're at least glad today has been an easier trip, we hope.
Mr Gary Malkowski (York East): Thank you for a very comprehensive presentation. It helps us understand the needs of people with schizophrenia in relation to home care and long-term care. But on the issue of respite care, the MSA will have specialized services for people. There'll be information and referral and resources available there, and there will be eligibility criteria for siblings or family members who need respite care.
Do you feel the criteria should be flexible enough to provide services for people who care for people with schizophrenia? I'd like to clarify what you mean by that, about being more flexible in the criteria.
Mrs Noble: I believe we should treat them as individuals. You know, when you graduate from high school you're not all going to be teachers or all engineers. You must remember they are individuals and so there's an individual need there. I think it's less expensive if the government will do an individual assessment, because some of these people require very little and others require more care, more attention.
We have a real fear that these people will be warehoused, and I want to leave with you a story today that I have not been able to verify but that I was told in confidence. A young girl phoned me up and she said her brother was in a group home, that a car pulled into the driveway and a young man got out with his suitcase and came to the door. When they opened the door, he came in and he said he was told to come there, that he would be staying there from now on, that his father had died and the other siblings had simply got rid of everything at the house, and so I guess they took the dog to the pound and they took him to a group home.
That really upset me. She did not want me to use her name because she was afraid it might be hard for her brother, but I think that already the crisis for senior citizens is happening. What do we do with them? We'd like to be part of the planning for them. They've been with us so long.
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The Chair: Mrs Noble, thank you for coming before the committee again, and in particular I would want to note a good number of articles and documents which you've included for all of us. We appreciate it.
Mrs O'Neill: Mr Chairman, can the ministry officials tell us how an MSA can get involved with the mental health component that our presenter, Ms Noble, has just brought forward? Apparently that's a possibility, but it is certainly not well known that it's a possibility because mental health, as we understand it, is outside the act. Could Mr Quirt or the parliamentary assistant give us an idea of how an MSA can get involved with mental health?
Mr Wessenger: I will ask Mr Quirt to indicate how the referral might work.
Mr Quirt: Certainly multiservice agencies could make referrals on behalf of families to community mental health programs. There is a mental health review under way within the Ministry of Health, and it's conceivable that if that review, through its consultation, were to suggest that more community-based mental health services like respite care should be made available, the multiservice agency for long-term care would be a building block for that, and that community mental health programs might augment the range of services that they provide. The bill would allow for that.
As it stands now, some people with schizophrenia and their families may have difficulty meeting the eligibility criteria now described in the bill for long-term care because, as you know, it's designed for younger people with physical disabilities and the elderly. But certainly if the reform of mental health results in more community service programs, if communities thought that was a good idea, there's nothing to stop an MSA from expanding the range of services to be in the community mental health support business as well.
WAITING WITH CONCERN COMMITTEE
The Chair: I call the representatives from the Waiting With Concern Committee. Welcome. You've waited until we were ready and we appreciate that.
Ms Deborah Jazey: My name is Deborah Jazey, and I'm the chairperson of the Waiting With Concern Committee. This is Mr Gary Jazey; Brian Dunne, who's associated with us through Participation House; and on the end, June Ellis, who is also a parent member of the Waiting With Concern Committee.
As far as our presentation, the Waiting With Concern Committee represents family care givers of adult children and consumers living at home. We are and have been the unpaid providers for our children for the last 20 to 30 years. The majority of our children have been on waiting lists for community services for anywhere from five to eight years. Our children do not qualify for attendant services as they require guidance and supervision, and they cannot fully participate in or direct their own care without this guidance and supervision.
Our group, the family care givers, are no longer able to support our children at home and your reform provides us with no light at the end of the tunnel. Relief and respite are not viable options as it represents mere tokenism when our own physical and health issues make it impossible for us to continue to provide this physical support. We have other responsibilities and needs, those being to maintain our jobs, family income and careers. It's impossible for us to continue to provide the level of guidance and supervision once our adult child's school years have ended without putting all of our family members at risk. Our own aging and retirement plans make it impossible for us to carry it on.
Our children need to move on and experience the same quality of life and experiences as their peers and other siblings by living on their own. We continue to wait for community services, we continue to raise our voices, we continue to participate, consult and join committees, yet our children continue to be forgotten within long-term care reform. Our needs continue to be ignored. The concepts of equality or equity in service do not include them or us. We have been left out by the Ministry of Health.
When your reform of long-term care began in 1992, we were at the bottom of the deck. After two, almost three, years of our working within your reform process, looking at Bill 173 we simply see that the cards have been reshuffled. Our needs as care givers and parents and the needs of our children have been relocated and reassessed yet we still have ended up on the bottom of the deck with increased vulnerability and at risk of being totally lost in the hand that Bill 173 is dealing.
We still have no guarantees; no one is willing to guarantee to work towards ensuring that our adult children will not end up institutionalized. This bill has not addressed the rights of those people with high care needs to service in the community, nor has it addressed how finite service dollars will be equitably disbursed to the wide variety of individuals who need service in the community. This bill has left us without answers, commitment and direction and a vision of the future regarding people with high care needs. This bill has left us without true reform and has given us bureaucratic juggling and rearrangements that bring us no closer to obtaining service for all in the community today.
Time is slipping away and so is our ability to cope. Our needs continue to be ignored and the Ministry of Health continues not to understand these needs, because in understanding our issues would lie the responsibility to address these issues and make commitments to the needs of our adult children and to us as primary care givers.
It is important for you to hear about our group's experience with long-term care reform. It is our feeling that our experience with long-term care reform will reflect on Bill 173 and its implementation.
Our experience will also give you the base to understand our concerns and mistrust regarding this piece of legislation, its implementation and its failure to include those with multiple disabilities who may not be able to direct their own care.
We have been meeting since 1991. We began by talking to the ministry office. We spoke to planners of the district health councils, with meeting after meeting trying to get Health people to understand the needs of our healthy, adult children with disabilities.
We were told to prepare a proposal. After much hard work, effort and countless hours of preparation, we consulted with Health representatives. They told us our proposal was right on the mark, it was wonderful, but that we would have to wait. We waited to find out where and when it was to be sent, never getting clear directions from those who were supposed to guide us through the process. Phone calls made to these officials would often go unanswered. Again we were told to wait.
It was determined that even though we were put on hold, others were obtaining funding.
We presented a model of support that would best provide the guidance and support required by those people that we represent. We were told it couldn't be utilized because it doesn't involve supportive housing. Our model is cheaper. What happened to consultation and listening to the local community and consumers? It appears everything is being overridden by arbitrary policies. From where and to what end? Again, our model is cheaper to the taxpayer but it is ignored. Why? Subsidized housing costs the Ministry of Housing upwards of $800 to $1,000 per unit per month. A unit represents one bed. Why did you ask us as parents and our committee to spend our time if the answers were to be dictated?
We have joined subcommittees of the district health councils to talk about the needs of our children, and end up in the middle of discussions that continue to focus on the system, the bureaucracy and professional issues. We participate time and time again in consultation after consultation -- the red book, the green book, the blue book -- but our voice and the voice of the individual that we represent goes unheard. Again, we are not in Bill 173.
In 1991 we started out requiring immediate support for 17 people. In 1994 we continue to need support for 17 people. Bill 173 does not help us to access support for our children.
We cannot go on and we cannot accept that our adult children with physical disabilities should end up in institutions or in community services that do not provide the support and supervision that they require. By ignoring our needs in the consultation process, by the Ministry of Health officials telling us it's important to get more bang for the buck, by the ministry's lack of commitment to meet or even acknowledge the needs of those with high care needs, your inference within Health is that we as parents have wasted 20 to 30 years of our lives supporting children at home as you will make no assurances that they will not be institutionalized as adults.
All of us were told 20 years ago to keep our children at home, to teach them to be as independent as possible and that when we as parents could no longer continue to support them or when the child became an adult and wanted to live as independently as possible, there would be something for them. Unfortunately, we found out the hard way there's nothing.
One of the parents on our committee was allowed to adopt her son with multiple disabilities 16 years ago with the provision that this child had somewhere other than an institution to go when it was time for him to live independently. Ministry officials at that time guaranteed this. Where are the guarantees now for these people?
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We as parents and care givers feel betrayed. I raised my son for almost 21 years and have not asked for anything from the ministry. It was I that paid the $36,000 for the custom van. It was I that paid for the modifications that were required to our home to make my son as independent as possible; the countless hours of lifting and just doing all of the responsibilities. The sacrifices are worth it, though, because we had a light at the end of the tunnel. We had a promise of service being provided to our children that would accommodate their disabilities yet allow them to grow and live as independently as possible.
Now we're being told that the people in institutions have priority to service in the community, as it cost them nothing to have us as parents, care givers, provide these services for free. Did we make a mistake not institutionalizing our children then? What happened to all the rhetoric regarding normalization and integration?
This legislation continues to focus on the bureaucratic process and procedures. It continues to focus on the needs of and the creation of a system which provides great opportunity for buck-passing and a process of accountability that is so cumbersome it is unusable and time-consuming to the general public, and to us as care givers who have already been tied to our homes, we cannot leave our 19-, 20- and 25-year-old adult children to go out now. How can we participate in the process? Where is the time, who is responsible and how do we get off the waiting list?
This bill proposes a planning process through district health councils, but we have no true local power, direction or accountability. Edicts regarding subsidized housing, emergency response come from on high and are imposed locally. Those of the old power service systems are those who are appointed again to the councils under the categories of providers and others. Look at the makeup of the health councils the next time you have access to them. How many true consumers are really involved in this system? These councils have no accountability to their local committees as they are appointed, not elected. The council does not have a voting membership. All can apply but only a select few are chosen. We as consumers are not afforded the opportunity to select our representatives.
This bill provides us with no local control. This process just keeps us in the service system doing busy work. When and where will the focus be on the individual and the individual's needs? This process continues not only to ignore these direct and functional needs, but in fact uses up greater amounts of service providers' time, energy and money that could be going to provide services to meet the basic needs of individuals.
How does the consultation process work? What is determined? Who and what is listened to and what is ignored? What are the criteria for using information gathered in all these consultations? Is it just another way for the government to avoid taking responsibility and not having to make strong commitments and value-based ethical decisions regarding people's right to live in their own community regardless of their level of disability?
In summary, during the latter part of 1992 and early 1993, we, as parents and family members of individuals on the waiting list of Participation House Support Services, began to meet with various ministry representatives and health representatives to state our concerns and elicit their assistance in respect of certain concerns. These concerns are in respect of:
First, the exclusion of this group, which is individuals with physical disabilities who may not be able to direct their own care, from the long-term care reform.
Second, the implied reference was another concern that we had within the long-term care document that adult children would or should remain at home for 40 or 50 years. I can assure you that this information has dramatic impact on aging parents, their children and would greatly influence the decision of young families caring for physically disabled children today. The concept of long-term care within parents' homes directly contradicts what we as parents heard from the ministry and the services for years regarding independent living, normalized principles and full integration.
Third is the fact that no additional expansion of services has taken place within the London community for this identified group since the original and one-time startup allocation to Participation House Support Services, London, in 1989. The waiting list continues to expand and is currently at 92.
We have been contacted by members of the parents' group at the Thames Valley Children's Centre to determine how they can get their pre-teen and younger children on the list. Questions regarding equity of service to all people within long-term care arise given these practices.
Bill 173 does not provide for 24-hour support for people with multiple disabilities and who have been on waiting lists for years currently living at home whose parents can no longer provide for them. We need a guarantee for service for those who may not be able to direct their own care. Bill 173 does not provide us with a commitment that young adults with multiple disabilities will not be institutionalized against their will when families can no longer provide the support required. This includes nursing homes. When we talk about respite, we're told, "Well, they can go to the Dearness Home." I don't think so. We need a commitment that the community will support them. Bill 173 does not provide a guarantee of equal access to service for all in the community, regardless of an individual's disability.
We need this bill to define a set of basic needs and entitlements. Bill 173 does not provide a guarantee that access to service will be equitable for those living at home. Did we do the right thing by supporting our children for the last 20 and 30 years, only to find out that those in institutions have access to the services in priority to those still at home? We need this guarantee.
The ministry and this bill need a focus to ensure that dollars go to support people directly and are not lost in supporting systems and bureaucracies. Reform should be focusing on how to get more dollars to the individuals and needs, not on how to get more management and meetings. The ministry needs to select agencies that spend most of their government dollars on direct, front-line care, to lead this reform process.
Most importantly, do not ignore the models that are less costly overall, nor the choice of the individuals. Individuals should not be forced into cooperative housing and subsidized housing when judging efficient use of tax dollars. The long-term care office and planning body should consider costs to both the long-term division and costs to the Ministry of Housing; and lastly, meet the needs of those in need now. The current process only ensures that we will have to wait on the bureaucrats, planners and professionals to rearrange their seating. This bill should address these immediate needs.
In closing, your bill continues to be a disappointment to us. The real reform, the move to support all individuals within the community with the individualized funding to meet their basic needs regardless of disability, is not guaranteed to those on waiting lists. Our children are left out and we are left in crisis.
Is it possible that Health does not understand our community needs? As we stated in the beginning, you have recreated, relocated and reassessed, and we still have the same results: 17 in need of immediate support in 1991 and 17 people in need of immediate support in 1994. These reforms have had and continue to have little focus on results that will directly impact upon the individual in need of service. You have spent three years and you've had us invest three years of our time, time that we could ill afford, and unfortunately, the results are still the same. The deck has been reshuffled, but we still come out on the bottom: no service, no guarantee for community service and we're still on a waiting list.
I want to thank the committee for allowing us to present this presentation.
Mrs O'Neill: Thank you, Ms Jazey, for coming. I am rather moved by your passionate presentation, and certainly, the presenter before you.
It seems most unfortunate that parents like yourselves have not been more meaningfully involved, and I use those words carefully. I don't know your program and for that I apologize. I am wondering if the plan was something like special services at home. I'm trying to appreciate your brief. Is it that you need more supports within the home? You talk about it being cost-effective and that program has been cost-effective and yet I think it is also outside this bill. So perhaps you can help the committee by just explaining what the need is or why you feel you've been left outside the bill.
I think you've been very clear in saying that the particular children you're here representing tonight, your own children, do not fall into the direct funding for attendant care, for instance, but they are much beyond that. So if you could just help us by saying why you think they fell out or how they fall out, because I'm just not able to put that together.
Ms Jazey: Basically, what the bill provides for is attendant services.
Mrs O'Neill: Right.
Ms Jazey: Our children do not qualify for attendant services. One of the criteria for attendant services is that people must be able to direct their own care. Our physically challenged adult children in some cases appear -- I hate to use this word, but normal -- but they cannot direct their own care in some areas. In some areas they can; in other areas they cannot, such as money.
My son is 20. You can give him a $20 bill. He can take a cab. They can tell him it's $5. He doesn't know how much change he's getting back. So you can see, they are very vulnerable that way.
Now, what has happened with this group -- and we are associated with Participation House. Participation House provides support to adults outside of their home. It gives them an independent living area, with 24-hour service, if required. It's their own home; they're not in an institution. They don't have to say to anyone, "What are we having for dinner tonight?" It's their choice. It allows them to live independently, away from their parents.
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Mrs O'Neill: You say it doesn't fall into supportive housing either, though.
Ms Jazey: Not really.
Mrs O'Neill: It's something in between?
Ms Jazey: Yes.
Mrs O'Neill: The ministry officials might try to help to see whether there is any provision in this bill that would perhaps be of some use to a group such as this.
Mr Jackson: It's like Cheshire Homes, isn't it?
Ms Jazey: No. At Cheshire Homes you have to be able to direct your own care.
Mr Wessenger: I'd like the ministry staff, first of all, to indicate whether this program at Participation House is under Ministry of Health jurisdiction or not -- it is? -- and if there are other similar programs and if they would come under an MSA jurisdiction.
Mr Quirt: If I understood the presentation correctly, I think what the presenters were asking for is a form of supportive housing where a degree of supervision is provided so that those people who aren't capable of living independently and calling for help when they need it could be monitored so they would live with the same degree of supports that people in supportive housing have, but wouldn't necessarily have to be able to know when they needed help and to summon it. We'd be prepared, as the long-term care division, to consider a proposal that involved that degree of supervision in a supportive housing setting.
I know our consultation paper on supportive housing out now is aimed more at those situations where people live independently in their own apartment and have 24-hour, onsite staff. If they fall they press a button or call out and somebody is there in a couple of minutes to help them.
If I understand your presentation correctly, what you're looking for is a community living alternative for those people who might not be able to summon their own help and would need a degree of supervision above that.
Ms Jazey: That's correct.
Mr Quirt: I'm speculating here, but it wouldn't surprise me if some of the children that you're caring for would, from a bureaucratic point of view, be called dual diagnosed. Perhaps you may have been talking to the Ministry of Community and Social Services as well about support services from there. Here again, our local office would be happy to consider working with the Ministry of Community and Social Services on some kind of a joint arrangement. Again, we'd be obliged, of course, to take the advice of the district health council into account in that regard. I hope, if you haven't made it clear to them what type of program you think your children need, you will. I know our staff would help you do that.
If we haven't been as supportive as we might have been, from your perspective, to date, I agree that it's taking time for us to flow the money for supportive housing and to get new programs started, but I know we're piloting a fairly intensive respite program here in London over the next two years to look at providing respite for families in your situation, where an intensive weekend relief will be provided for some families.
I know that in discussions about the redevelopment of a chronic hospital here there's discussion about the creation of supportive housing spaces funded from the hospital budget that's being redeveloped for high-care individuals in the community. It wouldn't surprise me that it might be possible to link the needs of the people you're representing to either of those two processes.
Mr Brian Dunne: Perhaps I could clarify the Participation House Support Services service. It originated in the Ministry of Community and Social Services and is currently funded through the Developmental Services Act and the Homes for Retarded Persons Act, administered through the long-term care office. Under those pieces of legislation, it takes its mandate and direction.
Mr Quirt: That's correct. When the long-term care division was established, there was a discussion about whether those programs and services that serve people who are both physically disabled and people who had also a developmental disability should stay with the Ministry of Community and Social Services in the programs for developmentally handicapped people or move over. There were some that did and some that didn't, dependent on local negotiations and discussions. Here again, we will do our best to make sure that the needs of your folks don't fall through the cracks because of two ministries being involved in support services in the community.
Mr Dunne: But the issue really is that, for people with high-care needs, attendant services are capped for the number of hours of support a person can get in the day. This group of people require 24-hour support and we can't find that in this piece of legislation.
Mr Quirt: This piece of legislation will fund supportive housing programs with 24-hour support and will fund support services to the extent that people who are ventilator dependent will live independently in their own apartment, so there's no restriction in this bill that would limit the degree of services available in supportive housing. Clearly, a number of our supportive housing clients have lived their lives up until they moved to supportive housing in chronic hospitals.
The Chair: I'm sorry that I'm going to have to end the presentation, but I think this has been very useful in focusing on a particular group of individuals. Having some knowledge of Participation House and the excellent work that you do, this has been very valuable for the committee in better understanding those problems that you've set forward, and we thank you very much.
LONDON REGIONAL PSYCHOLOGICAL ASSOCIATION
The Chair: I call the representatives from the London Regional Psychological Association. Welcome.
Dr Edward Helmes: The London Regional Psychological Association is a fraternal group. Any given year we have between 80 and 100 members and we deal with a variety of individuals with disabilities and with disabilities related to aging, both in the community and in a variety of institutions.
The process of reform has introduced many changes to the care system, both within institutions and coming up to the community agencies. In many cases, any process of change is stressful for those involved, but in many cases this stress can be ameliorated by deliberate attempts made to moderate the effects.
A process of this sort is one in which the individuals in the agencies and the facilities have very little control over what happens to them, and if a process that involves effective communication is set up, if there are pilot projects conducted that indicate better ways to go through the entire process, then this knowledge can be passed along to individuals later in the process who can then benefit from the learning process. This hasn't been done with the legislation that was introduced under the 1993 bill, Bill 101, and it doesn't look like it's going to happen with Bill 173 either.
This means that life is going to be made much more difficult for the staff of these agencies, which in turn carries over to having a deleterious effect on the people they care for. There's an inevitable increase in sick time, which means that less staff, less familiar with the people receiving care, have to take over, increased use of employee assistance programs, increased staff turnover. It would be nice to see some kind of arrangements made to produce a more smoothly integrated process of change into the whole process.
Secondly, we're rather pleased that the physically disabled individuals are going to be covered under this legislation and that there will be more possibilities for independent life for them in the community. At the same time, and I think echoing other presentations, we'd really like to see other individuals given the same kinds of opportunities; people with serious psychological disorders, people with developmental disorders and also the individuals with acquired disabilities.
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The folks who have traumatic brain injuries aren't really covered under this legislation and, while there are noises about improvements being made for some of these groups, that doesn't seem to have had any immediate effect. So we're hoping that, at some point, better services will be available in the community for more disabled individuals.
Another point deals with the transformation of placement coordination into part of the multiservice agencies that are being set up. Reading the planned legislation, there seem to be some good things in there but it's not entirely clear exactly how or what guidelines are going to be set up for individuals making decisions about placement, or about what services are going to be provided for particular individuals applying for them.
It would be very nice to have somebody who's quite knowledgeable about the whole system and is quite well trained in making these decisions and who has access to knowledgeable advice on the relevant issues. It would be very nice to have a system like that set up and it's not clear that the one the legislation is planning for will in fact do that.
A critical part of all of this is that the individuals who are requesting placement in some kind of facility have a degree of choice about where they go. It's not clear that this is in fact going to happen, nor is it clear whether any of the facilities have any say about who they are going to be receiving.
Another concern we have is related to the confidentiality of information. The bill does say that the records of providers are to be confidential, but it also sets up provisions for program supervisors, who have relatively free access to virtually every kind of record in the system. Many of the regulated health professions that will be involved in providing care for these people have the regulations under their own legislation pertaining to the confidentiality of records, and it would seem that there is a built-in conflict being set up here between the program supervisors having access to whatever they want and the providers having a similar restriction on not releasing information. Unless this is sorted out in the legislation, we're setting up a guaranteed system for conflict in the future.
Sooner or later, we will be getting around to the role of psychologists in this legislation and we're rather disappointed that we continue to be left out. One of the important features we think is implicit in this legislation is that before an individual gets placed in an institution or a whole bunch of services are provided, it's very important to know what the basic problem is, and often that amounts to making some careful discriminations and informed decisions. Often the best people to do this are in fact trained professionals.
One important example is that very often the symptoms of depression in older people can mimic the symptoms of irreversible conditions such as Alzheimer's disease and, of course, depression is quite treatable and potentially reversible. To put a depressed individual into a long-term care facility because they look demented when they actually aren't, doesn't do either that person or the system any benefits.
Unfortunately, psychologists aren't covered under OHIP, which means that the possibility of agencies purchasing the services of psychologists is sharply reduced.
Another important service that psychologists provide is training and direct service in managing the disruptive and disturbed behaviour that's often seen in older people with dementia: incontinence, wandering, the physical and verbal aggression, inappropriate sexual activities. All can be managed with relatively non-invasive behavioural techniques developed and provided by psychologists. Again, it doesn't seem that there are going to be very many possibilities for such services to be provided under this legislation.
One element in this legislation that looks very promising is the provision for evaluation of various programs and service delivery systems. We think this is a very important element in this act. In fact, it would be nicer if the act read that the minister "shall" provide grants and contributions, rather than "may" provide.
There's a great deal of what could be called social experimentation in this legislation. There are many ambitious plans that are intended to improve services, but that it actually happens isn't guaranteed. A properly planned and carried out evaluation, not just of components of the system but the entire legislation, could provide valuable information for program planners and for social planners in devising systems like this.
Related to that, we note that there is a tremendous amount of paper systems being set up by this legislation. There's a very formal appeals process. There is an extensive list of regulations being planned. There's a patient bill of rights, which is another innovation being made, that has its own set of documentation requirements.
All of this appears to be leading to a much greater degree of centralized control through the Ministry of Health over a system that in the past has been largely operated by local boards and agencies. Whether this is going to amount to a positive change is another thing that remains unclear about the whole legislative process.
Mr Jim Wilson: Thank you very much for your presentation. You've brought forward a perspective that we haven't seen before in terms of tying in your experience with Bill 101 to date and reminding us about, indeed, Bill 43 and the Regulated Health Professions Act.
I note in your written brief there's something that begins with talking about the stress that was placed on staffs during the implementation of the first piece of long-term care legislation, Bill 101. I can tell you, from our hearings around the province, you ain't seen nothing yet. Many of these staff, current employees of agencies like the VON and Red Cross, are simply going to lose their jobs and have to apply for jobs with the new MSAs, because the MSAs will be delivering 80% of service.
You mention psychologists being left out. I want you to just comment on that, because you're quite correct in that we don't have a clear idea as members of this committee, because the bill is mute on the point with respect to assessment and who will do the assessment and eligibility criteria. We did have a bit of a briefing that talked about current criteria and how that might change, but it's very unclear. In responding, I want you to expand on that to drive the point home about the need for proper assessment at the front end and how you think you might fit into the MSA structure.
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I'll give you a couple of options. One is that perhaps psychologists could be hired directly by the MSA, on staff of the MSA, and therefore not fall under the 80%-20% rule. However, you do make the point -- and I'm unclear, and perhaps the parliamentary assistant will want to respond after you have a chance -- as to if they're purchasing services of a psychologist, I think you'd fall under the 20% rule and therefore MSAs may not be able to access your services even if they want to because there may be other priorities that they have to spend their 20% on. Do you just want to comment again on some of those areas?
Dr Helmes: Yes, reading the bill I came to much the same conclusions you did that there's a couple of ways things might be done, but the chances are there's not going to be very many possibilities for psychological services because it seemed most likely it would fall into that 20% section and I think there's going to be a lot of demand on that 20%.
Mr Jim Wilson: Do you think we should just scrap the 80-20 rule? Does it make any sense to you?
Dr Helmes: I'm not sure where that particular ratio came from --
Mrs O'Neill: Nor is anybody else.
Dr Helmes: -- and I'm not sure why it's been set at that point and why it seems to be so fixed.
Mr Jim Wilson: No one knows. We're going to just introduce an amendment to scrap it. I mean, it is an arbitrary figure. It's ideologically driven by the current government of the day, as far as we can tell, because they aren't able to provide us with any paperwork. But I will ask the parliamentary assistant to clarify the purchasing of psychological services.
Mr Wessenger: Under Bill 173, agencies will be able to purchase psychological services, although it's not a mandatory service, it's permissive.
The other thing I might add is yes, it's within the 20% rule, though I would point out that most psychologists are professionals, and if the service is purchased from an individual professional, then of course it's exempt from the 20% rule.
There's one other point I just might make for clarification. I'll take this opportunity now rather than interject later. The bill does not in any way give greater authority or powers with respect to placement coordination services. That remains the same under the new bill. So the placement coordination under MSA has no more power than it has under the long-term care bill, 101.
Dr Helmes: My understanding is that under the current placement coordination system they can make recommendations as to the availability of beds, with the choice being left to the individual whether they want to take that. Is that going to continue to be the case?
Mr Wessenger: That is going to continue. It will still be a consumer choice, yes.
Mr Jackson: Well, let's not oversimplify it. There are three choices and you're off the list. That's it. Period.
Interjection: It's three strikes and you're out.
Mr Jackson: That is the bill. This gentleman presented, and I was here, not in this building, but I was in this city, when that was raised when 101 was being done.
Mr Wessenger: Just to clarify --
Mr Jackson: That's the legislation.
Mr Wessenger: No, that's not in the legislation. The legislation on Bill 101 basically provides --
Interjections.
The Chair: Order. The parliamentary assistant has the floor.
Mr Jackson: We still had it as a guaranteed service.
The Chair: Order.
Mr Wessenger: -- that the placement coordinator --
Interjections.
The Chair: Order, please. The parliamentary assistant is explaining the situation as set out under the bill.
Mr Wessenger: Yes. The procedure is that the client will have the choice. Now, the reality is that people with emergency situations will have priority with respect to getting placements in the facility of their choice. Other people who are not in such high priority will have to go on whatever waiting list they prefer to go on, or they may select more than one waiting list, as many as they wish, to go on to the respective facility.
The other aspect is, a person who goes into a facility that's not their first choice will still have the option of staying on the waiting list of the facility of their choice. The individual, if they decide, because of time constraints or problems, that they have to or they want to go into a facility not of their first choice, can still stay on the waiting list for their facility of choice.
The Chair: We have to move on. Tthank you both for coming before the committee and presenting.
ASSOCIATION OF ONTARIO PHYSICIANS AND DENTISTS IN PUBLIC SERVICE, LONDON REGION
The Chair: I call on the Association of Ontario Physicians and Dentists in Public Service, London region. Welcome to the committee.
Dr Rita Rabheru: Good evening. My name is Rita Rabheru. I'm a physician at London Psychiatric Hospital. On my right is Kiran Rabheru, a geriatric psychiatrist at LPH.
The Chair: You keep it all in the family.
Dr Rita Rabheru: Yes. Kiran also sits on the Thames Valley DHC's task force on geriatric psychiatry. We will both be available to answer any questions you might have after the presentation. I'm the vice-president of the Association of Ontario Physicians and Dentists in Public Service, and I'm here today representing the London-St Thomas branch.
I'd like to give you a little bit of background on the association. The Association of Ontario Physicians and Dentists in Public Service was formed in 1974. Our membership includes 400 full- and part-time salaried psychiatrists, physicians and dentists. They work in Ontario's 10 provincial psychiatric hospitals and also in the Comsoc regional centres for people who are developmentally challenged. Our aim is to provide and improve the quality of medical care in Ontario's psychiatric facilities for patients, their families and the community. We do this by providing leadership, information and support to the front-line medical staff in the mental health care system.
This evening we are here to represent our patients, a group of people who are not able to represent themselves, those people with severe and chronic mental illness, some of the most vulnerable people in society today.
By some estimates, as many as 40% of the homeless we pass on the street every day have been our patients at one time or another. For the members of our association, they are people we share our daily lives with. To society, they're almost invisible. To us, they are ill with schizophrenia, manic depression, dementia and so on. Some of these illnesses are diagnosed as early as 18 or 19 years of age, and many of these people live to be 65, 70, even 80 or more. These are people with illnesses that so far are only controllable, not curable or preventable.
It seems to us that this makes them a long-term care issue, yet the severely mentally ill are not recognized in Bill 173. We would like to ask, where are the provisions for many young adults and adults in midlife who also require lifelong or periodic long-term care due to their mental illness? We believe that these patients should be considered under the bill in much the same way as adults with physical disabilities. We're here today to plead their case, to make sure that the cracks -- and there are cracks -- in the mental health care system don't get wider.
What's caused those cracks in the first place? Three things: (1) the move to deinstitutionalize that started in the 1960s; (2) the lack of specialized long-term treatment for the severely mentally ill in the community; and (3) simply a lack of funding. We don't see that those issues will be addressed in the long-term care reform or the parallel reforms being carried out in mental health care.
With that background, we'd like to provide the committee with our views on the lack of integration between mental health care and long-term care reforms. We'd also like to highlight the current and future funding problems for mental health care here in the London-St Thomas area and the consequences for patients and society.
Like many other groups who have appeared before this committee, we wonder where the funds are going to come from to support the creation of MSAs and fund the other initiatives in the long-term care reforms when funding for health care is already at a critical point.
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Looking specifically at mental health, there are already three funding cut initiatives under way. First, there's the expenditure control program. As you know, this will take money out of provincial programs and put it into the general treasury fund. At London and St Thomas, we were just recently informed that over $12 million will be cut from our existing budgets over the next 18 months.
That's a considerable portion of our budget. It translates to about 150 of the 600 beds between the two hospitals. Does that mean this would result in the closing of one of these hospitals? What's going to happen to the severely mentally ill who use those beds now? How is Bill 173 going to accommodate them?
Secondly, there are the cuts that will result from mental health care reform itself. It has been estimated that over 10 years the reform program is expected to reduce the number of psychiatric beds by a further 50%.
Thirdly, we must assume that the reforms now under way in the area of long-term care will have to be partially funded out of the present much-reduced mental health care budget.
The government has stated that no new money will be made available to support mental health reform. Changes will be made by reallocating resources, money and people within the existing mental health system. In other words, multiservice agencies and long-term care facilities will be receiving some of that reallocated money at the expense of the provincial psychiatric system. Yet many patients, elderly and otherwise, are in the provincial psychiatric system because they cannot be managed in long-term care facilities, such as nursing homes.
This means that money is being taken out of the pocket of the severely mentally ill, yet there is no clear understanding in Bill 173 as to how their long-term care is going to be managed or provided in the future. Who does have the responsibility for these vulnerable people? And what are the consequences for them and their families with all these current funding cutbacks and future reallocations?
Well, as most of you know, these people disappear to hostels, the street or nursing homes, where sometimes they have to be isolated or restrained because of their behaviour. Let me give you a couple of examples.
At London Psychiatric we have a 78-year-old man who has been our patient for several years. He has lived in one nursing home for about 15. However, whenever this man suffers stresses, such as the loss of a family member or the death of a friend, he acts out aggressively and the nursing home sends him to us. That's happened four times now. Because of the environment at London Psychiatric, such as a higher staff ratio and trained staff who can deal with his aggressive behaviour, he tends to calm down after a few days and we can send him back to his long-term care facility. We don't overmedicate him. We don't do anything other than treat his aggressive behaviour in an attentive and psychiatric manner.
What's happened to this man? Well, after he's had four of these episodes, his long-term care facility refuses to take him back because his behaviour disrupts other residents. So now we are responsible for finding a new place for him to live. That's likely to take at least two to three months.
How will he be cared for in the future when beds are closed? How will Bill 173 look after his very specific needs?
Another example is even more tragic. It concerns an elderly woman who was a patient at St Thomas Psychiatric Hospital for many years. Because of funding cutbacks, two years ago the hospital had to close a ward very quickly, within three to four months. There were several elderly patients in that ward. One of these women was placed in a nursing home. After a short time in the home, she wandered off one night in the dead of winter because the home didn't have a secured facility. She was found frozen the next day in a cornfield. She'd been an inpatient of ours for 20 years or more.
How does Bill 173 address her needs? And how does it specifically address the care of the elderly with mental health problems?
As you know, the elderly are becoming a larger and larger percentage of the population. What may not be so obvious is the dramatic increase in mental illness that accompanies that fact.
According to studies, 8% of all Canadians over the age of 65 suffer from progressive dementia, and that's just one of the mental illnesses associated with aging. Ministry of Health studies indicate that 50% of all hospitalized elderly have at least one psychiatric problem. In long-term care facilities, 70% of their elderly residents exhibit personality or behaviour problems and 80% have a diagnosed psychiatric disorder or dementia.
Our association members and the work they do for patients in Ontario psychiatric facilities are on the forefront of these new and at times alarming changes in mental health care for the elderly. Six of Ontario's 10 provincial hospitals currently have community geriatric psychiatric programs. Here in London, we have been working since April 1993 to implement an elderly outpatient program. We presented our program to the district health council in the fall of 1993. Here we have a program that addresses the long-term community care issues for the elderly raised in Bill 173, yet because of all the changes, funding cuts, mental health reform and long-term care reform etc, the system appears to have become non-responsive to the very people it's supposed to be making these changes for.
Ontario's psychiatric hospitals have made great progress over the last 10 years in adopting more outpatient and home care approaches. As I told you, we've been trying to do that here in London for the last 18 months. Our association would welcome the chance to become even more involved in the implementation of the long-term care and mental health reforms currently under way. But to do this in a meaningful manner, we believe that the role of psychiatry and the current psychiatric system should be recognized in this bill as a partner and stakeholder in the reform process.
In closing, we thank you for your attention to this presentation and would welcome any questions you might have.
Mr O'Connor: Thank you for your presentation. We have heard from other people with concerns quite similar to yours. In fact, I believe we've been approached a few times and I think are to be approached further yet.
I guess the question I'd like to raise with you is, in looking at the basket of services that are being stated as a suggestion for a minimum for an MSA to develop, what would you suggest should be included in there that isn't included in there as far as the consumers you're advocating for, and would you see yourself involved in an approach to the MSA, the long-term care committee, to make sure that if there is a client group, the consumers in that given area, those services could then be provided?
Dr Kiran Rabheru: If I may, Larry, I had some experience with the long-term care consultation process. In Elgin county I was part of that committee, and this issue with the chronic and severely mentally ill was raised by a number of committee members at that time. It seems to me this whole segment of population has, for one reason or the other, just totally been omitted from this package. I think there are many ways the two can be bridged together, but it requires further discussion on both sides, and willingness. I think the key issue is willingness and funding, and I'm not sure that either of those two things are present at this time.
Mr O'Connor: In your approach to the district health council, did you find it receptive to the needs of the client group that you serve?
Dr Kiran Rabheru: As Rita mentioned, we have been meeting for the past I think it's almost six months on the psychogeriatric task force. There's a very good representation from various segments. I think we have had some very healthy and productive discussions, but that's where we are at right now. The discussions may carry on for another few months before the report will be submitted to the minister by our committee.
Our fear is that a lot of the cuts are being implemented now and it may be too late to do anything about that by the time the report is submitted to the minister and something is done about it. It may be too late to reverse the process. Our concern is time. I think, given enough time and willingness to work together, we can probably come up with a good solution.
The Chair: Thank you for coming before the committee and focusing on some issues that we don't always hear about. I think that's been very valuable.
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ONTARIO HOME HEALTH PROFESSIONALS
The Chair: I call on the representative from the Ontario Home Health Professionals. Welcome.
Mr Ken Cook: I'd like to thank the standing committee on social development for the opportunity to present my views concerning Bill 173. I am president and a shareholder of Ontario Home Health Professionals, or OHHP. I'm also a member of the Ontario Home Health Care Providers' Association, HomeSupport Canada and a founding member of the Canadian Home Care Association.
I am currently on the London-Middlesex county transition steering committee, the London long-term care task force of the long-term care committee of council and the London multiservice system working group. I have particularly enjoyed being able to be involved with some of the local planning of long-term care. The chair of the long-term care task force has assured the committee that we are involved to make a difference, to work towards developing change and monitoring the system.
I have been fully involved in OHHP since its inception in 1988. We provide homemaking services in London and Middlesex county. We currently employ approximately 160 full- and part-time staff. OHHP provides approximately 125,000 hours of homemaking per year.
In 1991-92 the government performed the comprehensive long-term care redirection consultation. Many of us participated in the process. In the meetings I participated in it was obvious that the seniors were having difficulty accessing services. They realized services were there for them but were having difficulty knowing just who to contact for the particular service they required. They also preferred to be able to have choice concerning their care. The need for single access to services was an obvious conclusion.
It is interesting to note that choice had been a big concern identified in the 1991-92 consultation process, but by September 1993, when the paper Guidelines for the Establishment of Multi-Service Agencies was published, the goals for the MSA did not even mention the need for consumer choice. Could it be that the government realized that in its mandate the MSA would not only be the administrator but also the provider of the services and that they had done away with choice? Choice encourages competition and competition is needed to guarantee quality of service.
In 1994 the Resources of Wellness demonstration project began at 1194 Commissioners Road West, a London and Middlesex Housing Authority seniors' building. The goal of the project is to demonstrate and measure the effectiveness of coordinating services within a seniors' housing unit through the part-time employment of a resource awareness coordinator. A call for proposals was issued to the not-for-profit agencies only and Red Cross was chosen to provide the service. A tenant who receives home care services at 1194 Commissioners wrote the Honourable Bob Rae and the Honourable Ruth Grier. A portion of the letter states:
"At the February 14th meeting we were definitely encouraged to become part of the pilot, in order to give it a `fair' test, but no on spoke the word `mandatory.' We left the meeting under the understanding that we did have a choice, and that if we were we so chose to keep our existing worker, we were at liberty to do so, and that this right was guaranteed under the NDP policy. In my case, there was no decision to be made. I am extremely pleased with my homemaker and the two fill-in people I have had over the last three years. That should say something itself in the area of continuity."
A while later, this resident was reassessed and told in a nice way that she was really expected to comply. The letter goes on, "I cannot risk losing my service, and I don't wish to be labelled a radical, yet I feel I do have the right to speak up, and I do have the right to be allowed to make my own decisions."
In the consultation draft Long-Term Care Division Supportive Housing Policy, March 1994, one of the desirable characteristics of supportive housing is delinked services.
It states, "Future supportive housing initiatives should, as much as possible, feature projects where the service provider is not also the provider of the accommodation." Then it goes on, "This characteristic is at the core of consumer empowerment and is important in striking a power balance between the consumer and service provider." Why doesn't the government apply this same logic to Bill 173. Bill 173 has the service provider, one and the same as the service funder.
In Bill 173, one of the purposes of the act is, "To recognize the importance of a person's needs and preferences in all aspects of the management and delivery of community services." Also the bill of rights in Bill 173 states, "A person receiving community services has a right to be treated in a manner that recognizes his or her individuality and that respects cultural, ethnic, spiritual, linguistic and regional differences."
How will the government allow preference to be given in the delivery of service? What if some individuals don't like the way they're being treated? Today, in the provision of community service, there is a choice and there are alternative providers. But once the MSA begins providing at least 80% of the services, an individual will be left with a "Take it or leave it" situation. Unhappy clients will have to complain to the same agency that decides services. Vulnerable people will be afraid to speak out, feeling they may risk losing their services.
In Bill 173, I do not see any recourse if a person just does not like the service which is being directly provided by an MSA. The direct provision of services by the service provider takes away any competition, and competition has been proven to increase quality.
The Thames Valley District Health Council's long-term care committee's multiservice agencies discussion paper, January 1994, states: "We are concerned that the multiservice agency model as suggested may function like a monopoly and may lead to inefficiencies." "The provision of direct service by the MSA could result in a loss of quality in the services delivered and a loss of incentive to maintain or improve the quality of services." It continues, "It would appear that in the integrated model there will be virtually no competition which will challenge not-for-profit agencies to strive for quality services provision and cost-effectiveness in the use of public resources."
The Middlesex-London Home Care case managers, in response to the long-term care proposal, stated: "We believe the service brokerage system needs to be preserved in order to enhance accountability. We have found that a mix of profit and not-for-profit agencies fosters competition and thereby improves agency flexibility and maintains cost-effectiveness. We also think that there should be managed competition between non-profit agencies and for-profit agencies within the home care setting."
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The Council for London Seniors wrote in response to the community-based services provided by the multiservice agencies:
"Seniors believe in profit and non-profit agencies for service. Seniors also believe that an agency providing care needs to fit into accountability framework. Seniors do not believe in the total elimination of the private sector services. Services must strive to be flexible and meet the needs of seniors and their families. A day is 24 hours long and needs to be covered by community support services. Patient and family rights and choices need to be taken into consideration."
A major advantage in the use of commercial agencies has proven to be their flexibility. Commercial agencies have developed expertise in scheduling visits or shifts during days, evenings, weekends and statutory holidays. We are flexible in response to the needs of our clients, office staff and home care. We provide capable, trained personnel. We stress continuity of the delivery of health care and have responded consistently with low minimum hours of care required to be cost-effective on individual assignments.
In the past, the minimum hours of care needed at one time to provide homemaking services in the home care program was set at a level of four hours. The minimum hours of care for both not-for-profit and commercial agencies has been reduced to two hours through efficiencies arising from competition. We are now able to provide one-hour service in special circumstances.
The benefits to the consumer and home care that stem from involvement of the commercial agencies has been reflected in the increased market share that the commercial agencies have gained over the past years. In 1992-93, commercial agencies were providing 67.1% of the services required by the Middlesex-London Home Care program. Assuming there is a high correlation between growth and consumer satisfaction in the competitive market, the quality of care offered by commercial agencies is demonstrated by their growth.
It is worth noting the experience in Manitoba. The Manitoba Home Care program, which in effect is an integrated monopoly, conducted an internal audit in 1992 which identified problem areas that need to be addressed. They were efficiency, timeliness and appropriateness of service. Their previous policy of exclusive not-for-profit home care service delivery has been reversed and commercial agencies are being invited to participate.
Another concern is the providing of at least 80% of the community home care services by the MSA. Will the MSA be able to provide these services? In London, in 1966, services were provided in nursing by the VON and community homemaking by the Red Cross. In 1981 in London the chronic home care program started as a pilot project and close to $3 million worth of services were purchased. There was growth in nursing, homemaking and rehabilitation. Because of a need by a client for a special procedure to be done in the home and the fact that the VON was unable to do it because of its then current policy, commercial agencies already providing private care were approached. At the same time, the Red Cross was unable to meet all homemaking needs, so two commercial agencies arranged the training of homemakers. The homemaking needs continued to grow. As a result, the commercial agencies became essential.
In 1994, today, $20 million of services are purchased by the Middlesex-London Home Care program with continued growth expected. In 1993-94, the VON had been given approximately a 9% to an 11% increase in nursing, but they were unable to handle all the growth in the home care program. The commercial agencies were needed to pick up the slack. The involvement of the commercial agencies has ensured that services needed in the community have been provided. Without the involvement of the community agencies, the Middlesex-London Home Care program would undoubtedly have been less successful.
If the MSA is not formed in London by the public health department, it will mean duplication of resources, personnel and services currently provided to the Middlesex-London Home Care program. A new administrative bureaucracy to provide for the financial, human resources, legal, information systems and property management service that are currently provided to home care will result in a less efficient and more costly program for the taxpayer to bear.
The service agreements of the Middlesex-London Home Care program for 1993-94 show that the not-for-profit providers receive $78.05 per professional visit -- for example, physiotherapy -- while commercial agencies received only $55.55. Not-for-profit providers received $37.30 per nursing hour while commercial agencies received $37.21. Commercial agencies already provide less costly service than non-profit providers. Commercial agencies also bear the cost of home support worker training while not-for-profit homemaking agencies have received government funding to provide such training.
Over the last years, organizations like the Red Cross visiting homemaker services and the VON have been given 11th-hour bailouts to cover their deficits.
The Ontario Home Care Programs Association states, in its 1992 response to the redirection document:
"The introduction of a for-profit service provider sector in the past decade has impacted positively on the quality and accessibility of client services, contract negotiations and cost containment. Not only is no rationale offered by the government's preference, but it may prove unrealistic given the demand for the service that will result from program expansion. We question the capacity of the not-for-profit sector to expand to the degree that would be required to satisfy council and projected case loads. The more fundamental principle should be that available services are quality-assured rather than not-for-profit."
As I mentioned earlier, in Middlesex-London the VON has been providing nursing services for years but could not handle all the growth in the in-home visits in 1993-94.
Shouldn't the government pay attention to the concerns being raised by the very organizations whose members are directly involved in providing these in-home services? Without knowing the cost, can a single agency be cost-effective? Can a single agency properly handle such a case load? Can a single agency maintain or improve quality of care? These questions have been asked again and again, but to date no studies have been done.
I am concerned for any displaced workers. In letters myself and others have written to the government, we have been assured that the MSA will employ all displaced workers and that there is no need for concern. The government has also said no guarantees can be offered to workers. They have also said that laid-off unionized hospital workers will be given first priority for alternative jobs in the health care system. Commercial agencies do not have a unionized workforce.
The Thames Valley District Health Council requested clarification that a shift to a predominantly unionized workforce would not, in the end, cost Ontario taxpayers and would not result in more and better service delivery.
Bill 173 states one purpose of the act as being "to encourage local community involvement in planning, coordinating, integrating, managing and delivering community services." Although the goal of the act is more community involvement, the decision-making is still in the hands of the minister. The minister is too far removed from local community issues. The Minister of Health must leave the job of planning and a good deal of the decision-making to the regional and community level.
Since appointments to the local district health council are approved by the minister, then the minister should allow them to manage local community care as they see fit. Excessive interference by provincial officials results in reduced flexibility at the local level and delayed implementation. DHCs must be given real authority to plan locally. Also, the evolution of the MSA from a community planning process will differ from community to community as needs differ.
I'd like to make the following three recommendations: That Bill 173 be amended by deleting section 13 which restricts the MSA in purchasing community support services. The local community should decide which is the most efficient and cost-effective way of delivering service to ensure choice, quality, growth and cost-effectiveness. In areas where the brokerage system has worked well, the option of continuing to provide community services in this way should be maintained.
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Another recommendation is the development of an effective, integrated information system that would enhance the coordination of community services. This information system can be developed on a provincial or a local level. This would have the immediate benefit of improving coordination of in-home services and thus improving access. This information system could also be used to educate the consumer and the physician about the services.
Recommendation 3: Local authorities should be given the ability to implement local decisions regarding the formation of MSAs in their community, as the needs vary from community to community.
All of us at OHHP have worked hard to build a business that is financially stable with a sound, respectable reputation within our community. Since I have been involved in OHHP from its conception until today, I am very much committed to the work that we do and am convinced that we do it very well. I also feel a responsibility to all the employees of OHHP who may be very much affected by the proposed integrated monopoly approach to the forming of MSAs.
I believe the government, the public sector, not-for-profit and commercial agencies can work together to strive to continually improve home health care in Ontario. It is hard to fathom that such a decision to limit the provision of in-home services by commercial agencies could be based on ideology alone. A decision which could have such a terminal result to the commercial home care service providers should not be made without a thorough study. A study is needed to consider the effects not only to the commercial agencies but also to the consumer, government and the taxpayer.
Mr Eddy: Thank you, Mr Cook, for setting out so vividly your concerns regarding the act and the provision of home care. I appreciated your describing in the way you have how you've met locally the tremendous growth experienced in the need for home care. That's particularly interesting. I note your many concerns and I thank you for your recommendations at the end, which we should certainly take to heart and try to convince those who are not convinced of the need for.
I'm particularly interested in the point on page 7 under E, the duplication, and also your call that it's absolutely essential from your point of view that the department of health establish the MSA and run it. I wonder if you would elaborate then on that a bit for us, because I think it's important, and realizing that MSAs may be different from one community to another, but stressing the local input.
Mr Cook: Yes. I feel the Middlesex-London Home Care program has done an extremely good and efficient job in the past years, and yes, there is a problem perhaps with access to the system, which I feel an information system could take care of. But as far as the work performed by the Middlesex-London Home Care program, I think it is excellent. Everything's set up, there are trained professionals who do their work and do it well, so why try to duplicate what we already have? Just try to work with what we have and create an information system that would give access.
Mr Eddy: That was stressed by the Lambton county representatives who were here, too. They mentioned about having an information system, a 911 system, for instance, for the elderly, for people who need home care.
Mr Cook: Yes. There has been money spent in the last years by the provincial government on kind of a communication system, but it hasn't been that successful. But time changes and technology is always advancing, so I think it does really need to be looked at again.
Mr Eddy: First good step. Thank you.
NURSE PRACTITIONERS ASSOCIATION OF ONTARIO
The Chair: I call the representatives from the Nurse Practitioners Association of Ontario. Welcome.
Ms Margaret Snyder: My name is Margaret Snyder and I'm the president-elect of the Nurse Practitioners Association of Ontario, and with me is Carolyn Davies. She is a nurse practitioner and she is a resident of the London area.
As you are well aware, the nurse practitioners have been entrenched in the system of health care for some time, although they've largely been let slip by the way. This past January the Ministry of Health announced that the nurse practitioner would be reinstituted into the health care system, and so we are here tonight to speak to the utilization of the nurse practitioner in long-term care programming. The Nurse Practitioners Association of Ontario is pleased to have the opportunity to respond to the standing committee on social development regarding Bill 173, An Act respecting Long-Term Care. Nurse practitioners practising in primary health care are committed to health promotion and illness prevention and are highly responsive to individuals and family needs in the community.
The Minister of Health, Ruth Grier, announced in February the enhanced utilization of the nurse practitioner in the province of Ontario. The nurse practitioner position paper of February 1994 recognizes that since its inception, nursing has emphasized the integration of physical, mental, social, spiritual and environmental factors to maximize individual, family and community health and wellbeing.
In February 1994, the Ministry of Health published two documents: one, Nurse Practitioners in Ontario, a position paper, and secondly, Nurse Practitioners in Ontario: A New Beginning. The following definition of a nurse practitioner is taken from these documents:
"The NP is a registered nurse with additional nursing education that prepares her/him to provide the public with services, within the role of nursing, in all five basic components of comprehensive health services (promotion, prevention, cure, rehabilitation and support) and at all levels of the health care system....
"The NP is a practitioner of advanced nursing. The services that she/he provides in the area of cure (diagnosis/assessment and treatment) are those that rest in the overlap between medicine and nursing and that can be safely and effectively given by either the physician or the nurse. Therefore, the NP should be, and should be seen to be, a practitioner of advanced nursing and not a second-level doctor or a physician's assistant."
The first point that we would like to address is regarding access of care. Consumers accessing long-term care have equitable access to services that are well-coordinated, meet their individual needs and are provided by the most appropriate care giver. The nurse practitioner should be a key player in assuring smooth access to long-term care services. Referral of the consumer to appropriate services is facilitated by full knowledge of the consumer's circumstances. This knowledge is based on thorough, comprehensive health assessment that recognizes physical, psychosocial, spiritual and environmental needs of the client.
Nurse practitioners are educationally prepared to provide comprehensive physical assessment, as well as assessment of pathophysiology, psychosocial factors and environmental factors with attention to family abilities to adapt and to cope with their changing circumstances.
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The nurse practitioner emphasizes health and wellness and supports the abilities of the consumer to live in the community. As well, the nurse practitioner also has the ability to recognize the risks inherent in aging and illness. Nurse practitioners have a history of functioning as team players, working collaboratively with consumers, health care professionals, and organizations.
Therefore, our recommendation is this: The Nurse Practitioners Association of Ontario recommends that nurse practitioners, who are educationally prepared for advanced nursing practice, to carry out comprehensive health assessments and to incorporate a holistic view of the consumer needs, provide a leadership role as assessors, care providers, coordinators, educators, and resource planners in long-term care.
Ms Carolyn Davies: I'll continue on with objective 2: preparation of registered nurses for advanced nursing practice. Registered nurses are essential and a key provider of long-term care and are critical for the successful implementation of the program. The expertise of the nurse practitioner promotes early identification of client problems, complications, or treatment of side-effects.
This is more likely to result in a quicker response time for the client to receive treatment alterations and a better-informed and more satisfied, healthier client. An example of that is that we can have a homemaker in or an NPA in, but if they're only looking at one small aspect of that client, they may miss certain kinds of symptoms that may be critical, such as a side-effect of a medication that they might not be trained to pick up. They may not notice that there's a deterioration of the client and so forth. So we feel that the nurse practitioner would be essential to be in there to be able to identify changes that might not otherwise be noted, especially when our clients are going to be at a higher risk in the community than they have been historically in the past.
At this time, registered nurses provide the backbone of long-term care. It makes good sense to provide the opportunity for some of these nurses to become educated as nurse practitioners. The appropriate use of this advanced-level nursing role has proven to be cost-effective in numerous past studies of nurse practitioners in primary health care.
Our second recommendation to the committee is that the Nurse Practitioners Association of Ontario recommends that registered nurses who are currently providing services that support long-term care programs be given the opportunity to be educated as nurse practitioners. Furthermore, we recommend that registered nurses be financially and administratively supported in accessing these programs and that funding mechanisms be shared among the benefiting agency, the provincial government, and the registered nurse.
Ms Snyder: Our third objective speaks to continuing education funding. To ensure quality assurance and consumer confidence in the long-term care model, it is essential that health care providers receive equitable and relevant continuing education. Historically, nurses have been an invisible provider of care, and ongoing professional development has been dependent on the organization's left-over funds.
The following example of a report on palliative care initiatives in Waterloo region of January 1994 indicates the inequality of funding that frequently occurs, and I'm quoting from that report: "The initiative will provide $6,380 in funding for each of 111 physicians from across the province." This same report offers $1,800 to the entire Victorian Order of Nurses organization in Waterloo region for continuing education.
The skills and expertise of nurse practitioners can provide cost-effective services to consumers in long-term care. However, it is imperative that the funding mechanisms recognize the ongoing needs for professional development of all nurses to meet consumer needs in a highly technological and ever-changing environment.
The Nurse Practitioners Association of Ontario supports the commitment to fair compensation and job security for workers providing personal care and for ongoing in-service education towards their understanding of long-term care goals. The radical changes in the provision of long-term care makes it essential for ongoing education of consumers and their families about long-term care initiatives.
Our third recommendation is then: That the Nurse Practitioners Association recommends that the Ministry of Health and district health councils recognize the need for comprehensive continuing education programs for nurse practitioners and that resources for continuing education be a part of the funding packages on a level that is equitable to other health care providers.
Ms Davies: Objective 4: The collaboration of community health centres and multiservice agencies: The Nurse Practitioners Association of Ontario encourages long-term care planning to consider collaborative relationships between community health centres and multiservice agencies. This collaborative relationship will reduce duplication of services and resources and enhance seamless care for consumers.
Community health centres have a mandate to meet the needs of the unique community that they function in. Woolrich Community Health Centre, where Margaret works, for instance, has developed care giver support programs, hospice programs and other senior support programs. The nurse practitioner does home visits for frail elderly, and registered nurses provide a well-adult foot care and health assessment program.
There is a need to find ways to integrate existing programs of the community health centre with programs of multiservice agencies. Another example that I would suggest is that community health centres have already established a multidisciplinary approach to a view of the community. Their concept is based on community input, and the kinds of programs they provide are based on what the community has asked for. Plus you have almost all of the service providers, depending on the need of the community, and therefore long-term care providers can communicate beautifully between the two groups for support and backup. It would be a step between that and hospitalization.
So our fourth and final recommendation is: The Nurse Practitioners Association recommends that district health councils, multiservice agencies and community health centres work collaboratively to meet the long-term goals of providing comprehensive health care and resources for the local community.
On that note, I'd like to thank you for your attention to our presentation, and now we invite questions.
Mr Jackson: I want to thank you for your brief. It mirrors very closely many of the insights and suggestions from a presentation from your organization at about 12:30 today, in Toronto. So I really don't have any questions other than the fact that the issue of training has been raised by various groups who have raised the question as to who's going to do it.
You've indicated your willingness, with your professional expertise, in order to provide it, but I'm still at a loss as to determine how the legislation will encourage it being done or who will pay for it. I suspect that you'd be eminently qualified to do the training; it's just where that would occur. The previous deputant made reference to the fact that the government funds it when the non-profit sector does training but the private sector has been doing it on their own. Could you expand on that portion a little bit better for my understanding?
Ms Snyder: I think there are two issues of training that we're talking about. The one issue is the education of nurse practitioners, and that is now being addressed at the provincial level in terms of the educational programs that are being put into place.
We are recommending that the organizations that employ nurses in long-term care would very much benefit by integrating the nurse practitioner role into their agencies. Because it would benefit the organization and it would benefit the system, it would be very useful if the agency could, in some way, participate in the funding. We also talked about administratively: making it easy for nurses to go, giving them the time to go, giving them the support to go, and maybe some funding as well.
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Mrs Elinor Caplan (Oriole): Since Mr Jackson doesn't have a second question and there are a few minutes remaining, could I ask a question?
The Chair: If members would like, we do have a bit of time. I think if I allow you a question, I will also allow a question from the New Democrats, if everyone is agreeable to that. Okay? Agreed.
Mrs Caplan: Actually, I believe the group at 12:30 was the practical nurses, not the nurse practitioners.
Ms Davies: A little bit different.
Mrs Caplan: They are different.
The Chair: Nurse practitioners are also very practical.
Mrs Caplan: As I read the legislation, there would be nothing that would preclude nurse practitioners from participating as employees of an MSA or being part of an organization where the service was purchased from, but I'm intrigued and my question really is about how you would see the relationship between the MSA and the community health centre. You talked about a collaboration. Would you see it as a purchase of service on behalf of the clients who would be referred there, or how would you see that working? I see this as one of the flaws of the legislation that requires the MSA to be an employer as opposed to being able to get into service contracts and refer people and turn to those collaborative kinds of arrangements that you referred to. So I'm interested in how you would see that working.
Ms Davies: Just on your first point, we see nurse practitioners very clearly. They're a very different group than the 12:30 group. They're an advanced level of nursing which functions very similarly to the role of a physician. About 85% of what comes into a family physician's office can be seen by a nurse practitioner. I often describe it as being like nurses in the north, where there are no physicians, but we've urbanized ourselves.
My vision, having a background in community health centres all of my career, is I see it at arm's length from the community health centre but working very closely with the community health centre, where there can be a collaboration of the kind of care that's required, such as that the long-term care staff could utilize the community health centre as a resource to problems that they might be having to address such as changing health status of a client who is starting to require either social work input, physician input, healer input, depending on the community that you're living in and what the staff is at the community health centre, which should be reflecting those clients who are being seen by the long-term care providers.
I see the multiservice agency as just making sure that, as we called it, the seamless care -- that there aren't going to be the gaps we are seeing now where suddenly, because a person's health isn't improving, they're cut off, or because they can only get 40 hours a week, and because they need 50, they have to go into a nursing home. This is not appropriate.
We are going to be seeing people who are going to be at higher risk, more frail, requiring more assessment judgement so that we can keep them there longer, so that we can assess whether or not we can provide them more appropriate care within the community with the care givers who they care about and avoid hospitalization or nursing home care unless in fact it is the best care that is required, not because the care giver has been worn out or because relatives can't get respite care, but that we are providing those kinds of things, so that the community health centre can be there as a backup to opinions. They would have the 20-year history of what that person's been doing, they know their wellness record from when they were young 'uns, and now they're frail elderly.
Mrs Caplan: There's nothing to prevent that happening now, is there, as you see the legislation?
Ms Davies: No, but at this point there are not a lot of community health centres and I think they should be a critical part of every single community. I see it as being part of the public health district that there be a community health centre in every single public health district so that people have an option between fee-for-service and a global community health centre.
Mrs Haslam: That's actually what I wanted to follow up on. I'm interested in what you were talking about because I'm interested in accountability for consumers and I'm interested in input from the consumers and the lines of communication and helping to design a program and having access to their records. I wondered, when you talked about the community health centre doing that kind of thing, whether you feel that an MSA can be beneficial in those areas, similar to what a community health centre does.
Ms Snyder: I wish I had wonderful, brilliant answers for you. I don't. But I can tell you a little about how we function at our community health centre, and I don't think it's a lot different from other community health centres. We spend a great deal of time with community members and focus groups assessing what the community needs are and how they would direct their care. I'm assuming that long-term care or multiservice agencies would be doing the same kind of thing in the same community, so the initiative would be to bring those two together so we're not duplicating services or we're not having community health centres pull together focus groups and do program planning and multiservice agencies doing the same thing. How do we link them together to provide care?
The Chair: Thank you very much. I suspect we could go on for some time, and we really appreciate that you came before the committee. I also suspect that nurse practitioners will become a larger part of our lives and our system over the course of the next number of years. So again, thank you both for being here this evening.
PARA-MED HEALTH SERVICES
The Chair: If I could then call the representative from Para-Med Health Services, Ms Barbara Heasman. Welcome to the committee.
Ms Barbara Heasman: Good evening, ladies and gentlemen. My name is Barbara Heasman and I'm from Sarnia, a community where I grew up, went to school, took my nursing and have established my roots. I feel Sarnia gave me a great deal and now it's my turn to give some things back. I'm involved in many committees in the community, from the Y to education committees to church and a lot of health care committees.
For the last 10 years I wore two hats. I was a primary care giver as well as a provider of service. I am branch manager of Para-Med Health Services, a company that I am very proud to be part of that has 106 employees in our region with a full range of services. I was also a primary care giver to my handicapped mother. She was an arthritic confined to a wheelchair for 40 years, but this did not keep her confined from doing activities in the community. I guess that's where I learned it from.
I grew up in a very care-giving family. When my father died, I realized the job I had ahead of me. My mother could no longer remain in her own home, and her great desire was not to go into an institution. So we went to the point of putting on a granny flat. We brought mother to live with us, in our family, and she needed assistance. She spent an exorbitant amount of money over four and a half years to stay off the system and ended up in hospital in chronic care and died on welfare. I tried several times to access the government system, the system I was supposed to know, and I had a great deal of difficulty.
There is no question that the government long-term care programs need to be reformed. The past experience with the system and the growth of the population in need of long-term care are strong reasons for reviewing and making changes to the system.
Bill 173 as it is now presented, however, is not the answer. The cataloguing of the needs may have been refined by extensive public consultation, but the solutions proposed to the identified problems are not always consistent or appropriate.
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There are two major issues that this brief addresses. They are the organization and structure of a multiservice agency and the government's distinction between for-profit and not-for-profit service providers. These issues are discussed in the following sections.
The government has proposed in Bill 173, part VI, the designation of agencies to provide long-term care services that are permitted under the Health Insurance Act. In doing this, it has proposed the largest organizational restructuring that this province has ever known, only surpassed in the country by an abortive attempt to unify the armed services by the federal government in the mid-1970s. The estimated number of jobs involved in the reorganization amounts to about 25,000, with the added disruption of 75,000 volunteers who freely give of their time to help their less fortunate neighbours. This is surely organizational overkill.
The reason for making this massive reorganization has been stated to be the difficulties experienced by those in need finding their way through the confusing and fragmented system that exists today. Trying to find information about what services are available, what are the eligibility criteria, and trying to access the services of the government system are justifiable reasons for reforming the system. But they do not justify the massive disruptive changes proposed. Simpler and less drastic corrective measures would be more appropriate.
Government intervention can take the form of three approaches: funding, regulation and reorganization.
Funding has certainly been tried to the limit, where it is beyond the capacity of the government to do more. Furthermore, more funding to the existing system has not produced the required incremental improvements.
Increased regulation is not popular today. The mood is that there is too much government intervention of this kind.
In the past, reorganization has been mainly confined to within the bureaucracy, and its impact is seldom seen outside the government work environment. The fact is that government departments exist in an almost constant state of flux, and to private companies this would be intolerable. Research data performed at the federal level show that one of the greatest causes of inefficiency and low morale in the public service is the consequence of organizational change. The public service takes it for granted, and it is not surprising that the same drastic measures are now being proposed or imposed on the health care system. In government, the constant reorganization is the major cause of low morale and dissatisfaction. We do not want this for our health care system. The problems identified can and must be rectified by much simpler and less drastic changes.
The MSA is not the best possible solution to the problems identified. The establishment of the MSA will disrupt the jobs and lives of about 25,000 persons across the province. About 75,000 persons who give freely of their time to charitable volunteer work will be expected to transfer their allegiance, commitment or dedication from the worthy causes that they support to an unknown quasi-governmental organization. They will be asked to give up the traditions and culture prestige that they have acquired and contributed to in the course of their volunteer work. The proposal to designate MSAs has been made without responsible consideration of these persons. It could be said that the MSA proposal has been made with almost callous disregard for the jobs of workers and the respect of volunteers.
It seems that little thought has been given to the difficulty of creating the MSA. In our own community, for example, the organization required to perform the functions defined in Bill 173 would require about 400 part-time and full-time employees and absorb the contribution of some 800 volunteers. It is questionable whether the consumer will be able to deal with a larger organization than was possible with the greater diversity of smaller units.
The administrative challenge of the MSA does not seem to be fully appreciated. The cost, for example, of changing to this monolithic structure compared to the present diversity of smaller units will be very great. We no longer believe there is economy of scale in larger units. Communication problems will mount and service quality will deteriorate for sure.
Can the MSA provide for the special needs that motivate the volunteer? There is a great deal of pride and prestige involved with the memberships of organizations which have earned their credibility by a history of service to the public. While initially the volunteers may be willing to continue their service to the public, time will tell. But it is a dangerous presumption and a risk to be taking by the government without more careful study and consultation.
In conclusion, there are adequate reasons for the government to scale down the magnitude of the changes it is proposing in the establishment of an MSA, and it would be more appropriate to be considering smaller changes. There is ample evidence that the creation of a coordinating agency would be a far more appropriate step to take at this time.
In the discussion leading up to Bill 173, the government has persistently made it clear that it draws a distinction between for-profit and not-for-profit sectors. This distinction is carried into Bill 173 through subsection 2(1), where an agency is defined as a corporation without share capital. This eliminates the commercial sector from actively participating in the long-term care system. It seems that the government has introduced an ideological distinction into the debate by the exclusion, and it's unfortunate. The private sector has made substantial contribution in the past into these services and should not be eliminated at this stage. In fact, the distinction that the government has made is very artificial, and its rationale for doing so is weak. It is important that this issue be openly discussed and not quietly and discreetly avoided.
The first question that inevitably arises is, what is wrong with profit and why this distinction? It's not a dirty word, nor is it an unacceptable pursuit. It seems the government is raising an issue that would have been more appropriate against Victorian capitalism than against present-day private investment. We believe this distinction should be eliminated from Bill 173.
Has anyone asked how much profit is being made from the health care sector of our economy? The minister has repeatedly offered the excuse that health care dollars should not go into profits, but what other motive is there for improving the efficiency and effectiveness of our delivery system? I can assure the committee that the profits being made in the company I work for are not such that anyone need apologize for or try to conceal them. Our financial statement is made available publicly on an annual basis and it shows that our investors are not taking advantage of government business.
The government of Ontario has many dealings with for-profit companies, not least of which are the international banks that fund the provincial deficit. The interest paid to them is much higher than the profits returned to the investors in the company I work for. Isn't it better to encourage Canadian investors to fund health care agencies than to be borrowing funds from international banks at a much higher interest rate?
The concern for profit is the best discipline for ensuring that expenditures are kept within the limits of revenue. This management style ensures that we do not have cost overruns and we do not have to return from time to time to the government for bailouts. Our performance shows clearly that there are still areas where improved efficiency could be attained, to the benefit of the taxpayer.
Mr Micawber in Dickens's David Copperfield sums it up well, as follows: "Annual income twenty pounds, annual expenditure nineteen nineteen six, result happiness. Annual income twenty pounds, annual expenditure twenty pounds ought and six, result misery."
There is no evidence to show there is any difference between the quality of service from for-profit and not-for-profit sectors. Within the community, each type of agency has its supporters who show preference for one or for the other. There is ample evidence that in some circumstances the private sector is more efficient than the publicly funded organizations. This varies from service to service, but it is very seldom that the commercial agency cannot match the cost of the not-for-profit agencies.
There is no evidence that employee compensation or job security is any different in the two sectors.
It is interesting to note that union employee pension funds are invested in for-profit companies, and these include health care service providers.
We believe the MSA constitutes an organizational overkill to correct problems which could be rectified by much simpler, less costly means. A coordinating agency would simplify the present system and satisfy the problems that have been identified. We ask the committee to reject part VI of the bill.
We believe the distinction between the for-profit and the not-for-profit sectors is restrictive, contrary to the best interests of the clients, the employees and the public. We ask the committee to revise the definition of "agency."
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Mr Malkowski: Looking through your brief and listening very carefully to your presentation, I just want to ask one question. In terms of your service, do you have a formal mechanism for consumer involvement? Could you just make a few comments in terms of the minimum provision of services across the province and that concept, as well as the issue of standardization of services? I know the seniors' association has talked about the need for a formal mechanism to make sure that their needs are being served by any agency, so could you just tell us a little bit about your own agency in terms of that?
Ms Heasman: First and foremost, as I said, we have a complete range of services, from nursing through homemaking, the therapies, nutritional counselling if it's needed, social work. We supply eight-hour shifts as well as visits and we work a great deal in the community. It's very difficult. We work alongside the seniors' associations. We supply volunteers to run an annual boat cruise. Last year there was a VON community walk in our community and I had 69 workers from our agency get out and raise $5,900 for the VON and we walked in their walk.
We work alongside our community agencies with the seniors whenever we are asked to go out. We run blood pressure clinics on a four-times-a-year basis. We do foot care clinics on a monthly basis. We work in close conjunction with the seniors.
We've got a lot of volunteers within our agency and family members from those employees, but it's very hard to bring volunteers in from the community because, you must remember, we're in the for-profit sector. They tend to volunteer more in the not-for-profit sector. But we do work very closely with them. I hope that's answered your question.
Mr Malkowski: Maybe I wasn't very clear. Let me just rephrase that. What I want to know is whether your organization actually has some type of formal mechanism within the organization for consumer participation, if, for example, they have concerns about improving the standards and so on.
Ms Heasman: We have a mechanism by which we get evaluations in from our clients on a regular basis, clients and families of clients. From those evaluations, if there is need for improvement or a change in the way we're providing services, we change what we're doing. We're there to service the consumer. As far as a formal mechanism in a large way, I would say no, we do not.
The Chair: I'm sorry, we're going to have to finish at this point with this submission, but may I thank you again for coming before the committee and coming over from Sarnia.
PARENTS OF TECHNOLOGICALLY DEPENDENT CHILDREN
The Chair: Our next presenter is from Parents of Technologically Dependent Children, Grace La Forest, president. We welcome you to the committee, Mrs La Forest.
Mrs Grace La Forest: Good evening, ladies and gentlemen. My name is Grace La Forest and I'm president of a group called Parents of Technologically Dependent Children. I would like to say that perhaps you have seen or heard a more polished presentation this evening. I'd like you to bear in mind that I am the parent of a technologically dependent, medically fragile child. I've had limited time to do this, but I hope I can manage to get my point across.
After reading Bill 173, one could be forgiven for assuming that children never were, are not currently and, probably most disturbing of all, will not be recipients of long-term care.
To deny such a truth is poor government on many levels. First, it is a blow to the very fabric of our society, one which is supposed to honour family values; second, it is fiscally irresponsible; and third, it subscribes to a system which violates human rights.
In respect to a blow to the fabric of our society, in the province of Ontario, children always have been the recipients of long-term care. Whether this be in an institutionalized, quasi-hospital setting such as Bloorview, a group home, a home share program or in their own home, they have been receiving long-term care. As a society, we have decided that institutionalized, segregated care does not value children in a constructive or supportive manner, and this PTDC heartily endorses. However, by failing to provide alternatives, we are denying the initial need for an alternative to parental support. History shows us that there always has been a need for this type of support. Under this bill, it is non-existent.
Equally as disturbing is the lack of in-home support so that the above need is at least delayed. The integrated homemaker program, for example, is only available to those over the age of 18. The conclusion we are left to draw, therefore, is that care giving to children who have high-care needs is to be left with the birth family. Families are being asked to take their children home from hospital and to accept the role of doctor, nurse, physiotherapist, occupational therapist, respiratory technologist, social worker and case manager, with no support for the next 18 years -- that is, if an alternative is even available at that time.
In the last decade we have witnessed an increase in the degree of medical involvement with children being discharged from hospitals to home care. With the advancements in medical technologies, the need for this level of support can only be expected to increase. I am reluctant to call these advancements progress, since true progress can only be evaluated on the overall impact on society, and unless we are prepared to be responsible to those who are left most vulnerable, it is not progress.
More than enough studies have been done to prove to this government that families of medically fragile children living at home are experiencing major effects from the burden of home care. The negative impact on the family is also greater when they experience problems and hardships associated with getting home care services. Contrarily, it is widely accepted in the medical profession, as well as by parents, that children ought to live at home.
Therefore, we know we have an identified need and we know the goal to be a good and beneficial one, and yet according to this bill these children are non-existent. Our families are living the family values which we are so keen to say are important to society, and yet this bill does not support them.
In the area of fiscal irresponsibility, since the move to deinstitutionalization began, and in the absence of alternatives, children have been booked into respite programs and left there. Without dwelling on the psychosocial trauma that the family must have gone through to be driven to this act, the financial implications warrant attention. A reality check would inform the government that not all families are able, for any number of reasons, to look after a child who has high-care needs. Where is the provision for this eventuality?
In a family system, the health of one member often has an effect on the health and functioning of other members of the same family. For some, especially mothers, there are more physical illness problems. In addition, the psychosocial effects, experienced as disrupted social relationships, personal strain and economic strain, are greater in these families than in families caring for less medically involved chronically ill children. The cost of not providing the care, therefore, needs to be taken into consideration.
Shifting the cost from an acute care hospital, at an estimated per diem rate of over $2,000, to individual families can only have long-term implications which we pay for now or we pay for later. Mothers of these children face a future of poor health, depleted savings, if any, and no pension -- poor rewards for years of dedication.
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With respect to subscribing to a system that does not provide for basic human rights, in the present system of home care policy a family of a technologically dependent child may be eligible to receive up to 40 hours per week of nursing services in-home. This usually means five nights of nursing with the family covering the weekends. This is of course a strain, but with the father and mother working in shifts, it can be accomplished.
However, let us look at the single mother. The nurse leaves at 8 am on Saturday morning and the mother is on duty until Monday night at midnight. That is a working shift of 64 hours. This shift is extended to 88 hours in the case of a holiday weekend.
The Geneva Convention ruled in 1990 that sleep deprivation was a minor cruelty and subject to punishment by international law. They define sleep deprivation as being forced to go without sleep for a period of 24 hours.
It should be kept in mind that during these 88 hours, the mother may be called upon to attend to a ventilator, do tracheostomy care, gastrostomy, central venous line, run IVs, as well as prepare meals, launder, housekeeping, do shopping and do personal care for her child or children and herself.
As you can see, currently we are subscribing to a system which does not even provide basic human rights, and if Bill 173 is to remain as is, with children not mentioned specifically, there are no guarantees that this condition will be improved.
We would like to recommend (1) that children who have high care needs are clearly defined as recipients of long-term care, (2) that services to children with high care needs be defined under the mandatory basket of services, (3) that services available to care givers of the elderly or disabled adults also be available to care givers of children with high care needs, and (4) that alternatives to institutions be made available for those children whose families are no longer able to support them.
Thank you very much for allowing me to make this presentation. I'll accept your questions.
The Chair: Thank you very much, and if I can just say, we are really very pleased that as a parent you have come forward to make your presentation.
Mrs O'Neill: Thank you very much for coming to this committee, Mrs La Forest. Could you just tell me a little more about what your thoughts are on recommendation (4), just to describe what you mean by that?
Mrs La Forest: That alternatives have to be made for families who cannot provide for their own children.
Mrs O'Neill: What alternatives are you thinking of here?
Mrs La Forest: Perhaps an expansion into a home share program; more areas in supported living might be looked at. There has to be something. At the moment, there is nothing.
Mrs O'Neill: All right. If I may, I'd like to ask Mr Quirt to tell us how he feels about your recommendations, if any of them fit in presently to Bill 173, particularly recommendations (2) and (3), with respite care I presume as part of recommendation (3).
I do think that you bring very real needs, and I do think that particularly in the preschool years these needs are very great, and the transition time of parents to get used to a whole new set of responsibilities. So perhaps the parliamentary assistant or the ministry officials could suggest how these, particularly (2) and (3), could, may or do fit into Bill 173.
Mr Wessenger: I'll ask Mr Quirt to indicate how these services might relate to the multiservice agency.
Mr Quirt: Recommendation (1) that you make, that children who have high care needs are clearly defined as recipients of long-term care: We have been clear about indicating that people who need health care services at home of all ages are clearly clients of the long-term care system, and as you would be very much aware, some of our clients who present the greatest challenges to our long-term care system are those children and families who do extraordinary things to allow children to maintain as normal as possible a lifestyle in the community.
We think that clearly the core services in the bill, the therapy services, the nursing services, are very much available for children, whether they're at home -- and as you're probably aware, our current home care system is involved in delivering those types of services to children at school and that will definitely continue in the range of services that MSAs would provide.
We hope that by equipping MSAs with more flexible eligibility criteria and a system that allows the MSA to respond to a client's needs rather than responding to everybody on a 40-hour or a 60-hour-a-week basis, that if there's more targeting of resources to those clients who are most in need, there will be more flexible responses available to clients of all ages of the MSA.
I know that in London here over the next two years we'll be piloting a weekend relief program that we hope will address some of the concerns that you've raised about, particularly, single-parent care givers who, as you've rightly pointed out, have an incredible workload that they face when left to their own resources to care for their child at home. We hope that over those two years we'll be able to prove that providing weekend relief to families in that situation will be an extremely cost-effective and beneficial program. I'm hoping that the pilot will prove that eligibility criteria for MSA services across the province might be adjusted to allow for that in particular circumstances.
I am interested also in your suggestion about the sharing of responsibilities among families or the matching of families for sharing care giver responsibilities, and I understood that's what you meant by your suggestion that with the appropriate coordination and support, families might pool their resources to give respite to other families.
Mrs La Forest: No, actually that wasn't. The very thought of providing respite to another child who has high care needs just scares the blazes out of me, to be honest. What I was talking about was there is a program in London called Home Share, and certainly there has been a lot of criticism of that program because they get better support than the birth family. They get paid; they get respite every second weekend, for example. However, the need for that program is very, very strong, because what happens when there is no alternative? As far as I understand, the people who are being served right now are the only ones who are being funded. The people on the waiting list are not to be funded.
Mr Quirt: We'll certainly look into the situation with that particular program. Clearly, we've identified in the bill that respite for care givers is an important priority for the long-term care reform in general, and I might say that we're also committed in our policy documents to studying with other affected ministries in program areas the issue of direct compensation to family care givers. That's a very complicated area, as you would know, and it affects all aspects of human service delivery.
But the point that you're making is well made, that resources are available to support children in other than the family situation; it's time we looked at the options available to us to make it easier financially for families to continue their care giving role. Certainly we want to explore things like how the tax system might be used to make it easier for families in your situation to continue to provide the care that you are providing.
Mrs La Forest: Thank you. One of the things that I have discovered in many years of dealing with health services is that if children are not mentioned specifically, then they often don't get the service, and that is where the concern comes, that they be mentioned specifically.
Mrs Caplan: Would the ministry have any objection to that kind of amendment that would give that comfort?
Mr Wessenger: Certainly we can ask legal counsel to take a look at it.
The Chair: One of the things that was of interest to me and I think perhaps to all members of the committee is that I was not aware of your organization, but we do have in our own areas people who may be in a similar situation who will ask about what kind of support or organizations there are in the province. I wonder if you have a pamphlet or a letter about your organization which you could perhaps make available to the clerk and we could circulate that. Because I think this is an area where we do run into these issues and, again, having you as a parent come before the committee has been extremely helpful in underlining what you see as the problems there. Could you do that?
Mrs La Forest: Thank you very much. I'd be more than happy to provide you with a brochure, certainly.
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FRIENDSHIP IN ACTION
The Chair: If I could then ask our last presenter for this evening to come forward, Friendship in Action. I believe it is Linda Snedden, the executive director.
Mrs Snedden, I know you've been here during a good deal of the presentations. I want to assure you that while we've all been here for a long time, we welcome you as well to the committee and we appreciate the fact that you've taken the time to come. We also have a copy of your submission, so please go ahead.
Mrs Linda Snedden: Thank you. Good evening, ladies and gentlemen. I know it is late and you will be glad to know that I have a very short presentation.
Since its inception in 1977, Friendship in Action has functioned as an advocacy-visiting program to support isolated seniors. A student home help service received Ministry of Community and Social Services funding in 1984 in response to the need for more practical home help tasks for seniors. It has since been, of course, taken over by the Ministry of Health long-term care division. Volunteers in both our programs perform a wide variety of services, as diverse, in fact, as the seniors they serve.
As a member of the Ontario Community Support Association and funded by your ministry, our agency has participated in questioning and lobbying in preparation for long-term care reform. Therefore, questions about the multiservice agency concept have been in large measure addressed by that organization. I do however, from personal experience in dealing with older people in need of service, have some very real concerns about the criteria for home care.
The original concept of home care was to prevent costly acute care hospitalization, and yet, should a patient be discharged over a holiday weekend and no home care referral made, it can be another five days at home alone without any support systems. This in fact was the case of Molly after major stomach surgery for cancer.
The need for nursing services is not necessary for an independent woman with major disintegration of her spine. However, Annie, with a history of surgeries and a bad heart, has equipped her bathroom so she can bathe herself and is denied a homemaker to vacuum, prepare meals or clean the bathroom. Is your ministry advocating health promotion or crisis response? Does Annie have to have another heart attack to receive help pushing a vacuum and cleaning a tub? There is an option for Annie here: an expensive physiotherapist, in order to justify a homemaker. Is this reasonable and is it economical?
While the government is telling us to consolidate and amalgamate and reduce expenditures, we see existing home care programs hiring additional staff and expanding service. We see homemakers getting groceries where $5 private delivery services exist. We see homemakers playing cards, walking clients and sitting out the mandatory two or three hours while the other Annies wait and an 83-year-old spouse with cataract surgery -- and recent surgery -- is required to provide homemaking and nursing to a Parkinson patient who cannot stand without falling.
Charlie, a blind diabetic with a homemaker three times a week, tells us that there's not enough for a homemaker to do in his bachelor apartment. Archie, with a son and daughter next door, both teachers, both home all summer, still has a homemaker every day for two hours while another senior is sent home after ankle surgery, no cast, pins in place and told to put no weight on her leg. No need for a nursing service here, so she had to struggle to make her own bed, get her own meals, do laundry and let her other housework go. The risk, obviously, is one of further acute care hospitalization. In other words, I think that there is a problem with assessments.
In developing a service plan, Bill 173 talks about prescribed rules and standards when assessing a person's eligibility. Are these rules and standards the same across the province? Who sets the rules and standards? Are they flexible and coordinated with non-profit support agencies? Are they meeting the consumers' needs? I hear from many seniors that they are not. We respectfully submit, on behalf of seniors in Ontario, that these standards or lack thereof are at the core of rising home care costs and in real need of reform.
Home care staffing levels have risen rapidly as they assume more volunteer roles, yet funding levels for volunteer services have been flat-lined for two years. Volunteerism is an essential component in the delivery of community-based services. In addition to the valuable work-in-service provision, a significant amount of money is made available for community support services.
The open-ended home support assistance is not defined in this bill. Will there be an overlap between the eligibility of community services and homemaking services? For example, if homemakers provide transportation, what happens to the volunteer-based transportation service? Members of the Ontario Community Support Association provide these home support services. We see the deficiencies and strengths of the MSA plan and strongly advocate that OCSA be involved in the development and definition of service provided.
We do applaud the leadership demonstrated by the provincial government through the development of Bill 173, which provides the basis for the foundation of the new long-term care system. Most particularly, we appreciate the opportunity to work in partnership with the government and to have input with our colleagues at the community level to bring about the redirection of long-term care.
Mr Jim Wilson: Thank you, Mrs Snedden, for your presentation. It's a little unclear to me, however, what services Friendship in Action is currently delivering and how you're doing that.
Mrs Snedden: We are delivering a visiting service, which is part of the long-term care services of home support, and the student service is a home help service as well as providing an intergenerational contact with students and seniors in the community.
Mr Jim Wilson: Are you doing that primarily through volunteers?
Mrs Snedden: We are.
Mr Jim Wilson: Do you have any concerns about what will happen to those volunteers, whether they'll show up to also work for the MSA once it's put in place?
Mrs Snedden: I think that is being overdramatized somewhat. I do believe there's lots of evidence to substantiate that volunteers will work for certain loyalties. You will volunteer for cancer if you've had cancer in your family, that sort of thing. Many of my volunteers volunteer to work for seniors because they're missing a grandparent or they've just had a grandparent die or a parent die, that kind of thing, and feel very strongly about that. I think they will continue to work for Meals on Wheels or friendly visiting or transportation services, whatever, as the MSAs develop. I don't see that as being a major problem.
Mr Jim Wilson: It's a major problem for groups like the Red Cross, which in one area of the province has 10,000 volunteers and does not believe that people will either want to fund-raise or volunteer for what essentially will be perceived as a government agency. It may not be a problem for smaller groups.
Mrs Snedden: It depends on how it's worked out, but I think the people will still volunteer for the Red Cross within an MSA, is my reading of the way it will work. I do see a loss of volunteers as homemakers take over some of the roles that volunteers have provided. If you feel that you're not significant and that your services are not needed because someone else is there playing cards, you're certainly not going to volunteer to provide the socialization and visiting and outings that you formerly did.
The Chair: Thank you very much for coming before the committee this evening.
Members of the committee, before adjourning, just a business note: The clerk is handing out the agenda for tomorrow. If I could remind everyone that we begin at 8:50, I expect us all to be here shiny, bright, alert and ready to go.
With that, then, the committee stands adjourned until 8:50 tomorrow morning.
The committee adjourned at 2133.