FUNDING FOR PERSONS WITH DISABILITIES
GREAT LAKES SOCIETY FOR DEVELOPMENTAL SERVICES OF ONTARIO
CONTENTS
Tuesday 28 January 1997
Funding for persons with disabilities
L'Arche Ontario
Ms Peggy Keaney
Mr Joe Egan
Income Maintenance Group
Ms Marilyn Ferrel
Mr Scott Seiler
Ms Beth Brown
Great Lakes Society for Developmental Services of Ontario
Mr Geoff McMullen
Ms Dianne Belliveau
Ms Debbie Vernon
STANDING COMMITTEE ON SOCIAL DEVELOPMENT
Chair / Présidente: Ms Annamarie Castrilli (Downsview L)
Vice-Chair / Vice-Président: Mr Dwight Duncan (Windsor-Walkerville L)
*Mrs ElinorCaplan (Oriole L)
*Mr JackCarroll (Chatham-Kent PC)
*Ms AnnamarieCastrilli (Downsview L)
Mr David S. Cooke (Windsor-Riverside ND)
Mr DwightDuncan (Windsor-Walkerville L)
*Mr TomFroese (St Catharines-Brock PC)
*Mrs HelenJohns (Huron PC)
Mr W. LeoJordan (Lanark-Renfrew PC)
Ms FrancesLankin (Beaches-Woodbine ND)
*Mrs LynMcLeod (Fort William L)
*Mrs JuliaMunro (Durham-York PC)
*Mr TrevorPettit (Hamilton Mountain PC)
Mr Peter L. Preston (Brant-Haldimand PC)
*Mr BruceSmith (Middlesex PC)
*In attendance /présents
Substitutions present /Membres remplaçants présents:
Mrs MarionBoyd (London Centre / -Centre ND) for Ms Lankin
Mr MichaelGravelle (Port Arthur L) for Mr Duncan
Mr Gary L. Leadston (Kitchener-Wilmot PC) for Mr Preston
Mr DerwynShea (High Park-Swansea PC) for Mr Jordan
Clerk / Greffière: Ms Tonia Grannum
Staff / Personnel: Mr Ted Glenn, research officer, Legislative Research Service
The committee met at 1541 in room 151.
ELECTION OF CHAIR
Clerk of the Committee (Ms Tonia Grannum): Honourable members, it is my duty to call upon you to elect a Chair. Are there any nominations?
Mrs Lyn McLeod (Fort William): I would nominate Annamarie Castrilli.
Clerk of the Committee: Are there any further nominations? There being no further nominations, I declare Ms Annamarie Castrilli elected as Chair of the standing committee on social development.
ELECTION OF VICE-CHAIR
The Chair (Ms Annamarie Castrilli): Thank you so much. It's now my duty to call upon all of you to elect a Vice-Chair. May I have some nominations? I guess I will nominate Dwight Duncan. Any further nominations? Seeing none, I declare Mr Duncan elected Vice-Chair of the committee in his absence.
FUNDING FOR PERSONS WITH DISABILITIES
Consideration of the designated matter pursuant to standing order 125 relating to the impact of the Conservative government's funding and funding cuts on persons with disabilities and their families.
The Chair: Thank you all very much. You've been having a very intense and interesting time over the last few weeks dealing with Mr Gravelle's 125 motion and I'm delighted to be able to continue on this very important topic.
L'ARCHE ONTARIO
The Chair: Our first group today is L'Arche Ontario. Peggy Keaney, executive director, and Joe Egan, director of support services, are here. Welcome. You have one half-hour for your presentation, and if you leave any time we'll be happy to ask you some questions.
Ms Peggy Keaney: I hope that we'll continue to keep your interest on this topic today. Thank you for the opportunity of addressing you. If you would indulge me for a few minutes, I will give you a little bit of background as to what L'Arche is, because I think we're a well-kept secret.
Jean Vanier, a Canadian, began L'Arche in 1964 in France. Today L'Arche is an international organization of over 30 communities in 100 countries. In Ontario we have eight L'Arche communities, the largest representation by a province in Canada. We service over 200 people and have done so since our inception in 1969.
L'Arche is a residential placement for people with disabilities that is unique. In each locale where we are situated we form a community with the persons who have a disability and their assistants or, in other words, staff. We come together to live under the same roof and create home. Relationships of mutuality are fostered based on respect and caring, in keeping with Christian values. L'Arche is a non-denominational organization and welcomes people from a variety of faith groups and cultures.
As we are an international organization, we have a charter that all communities, no matter what country, adhere to. I would like to just take a moment to highlight a couple of the aims of our organization.
First, the aim of L'Arche is to create communities which welcome people with a developmental disability. By this means, L'Arche seeks to respond to the distress of those who are too often rejected and give them a valid place in society.
In addition, L'Arche knows that it cannot welcome everyone who has a developmental disability. It seeks to offer not a solution but a sign, a sign that a society, to be truly human, must be founded on welcome and respect for the weak, marginalized and those who need support.
Whatever their strengths or limitations, people are all bound together in a common humanity. Everyone is of unique value and everyone has the same rights. The fundamental rights of each person include the right to life, to care, to a home, to a faith life, to education and to work.
As a provincial organization, L'Arche Ontario participates in the minister's advisory committee and represents the interests of individuals and families with similar objectives. Due to its unique characteristics of blending professionalism, life-sharing and spirituality, it is very difficult to conceive that the same respect for differences could be achieved if all service providers in one area were combined under a single governance model. This model is being proposed in some parts of our province as we speak.
As an organization, L'Arche Ontario has a fundamental objection to the funding cuts for individuals who are developmentally disabled. Current spending reductions are not welcomed in general because of the already existing unmet needs in our local communities and, more specifically, because across-the-board cuts penalize those organizations and families that are operating efficiently while those that are not doing so are not held accountable for their financial practices.
L'Arche is committed to being an active participant, both locally and provincially, in reviewing how this sector can better deploy its resources. While we are committed to the principle of doing more with less and are already implementing this standard, we want to focus your attention this afternoon on three basic issues and recommendations.
The first issue: The importance and place of faith/cultural groups as service providers. Canada and Ontario are a mosaic of cultures and faiths. There is a long history of organizations providing services to people with a disability within specific faith and cultural communities. The government must continue to provide choices and options that understand and respond to such diversity.
Thousands of individuals and their families clearly want the continued involvement of religious and culturally based organizations in the delivery of human services because they feel it is important to receive support within the framework of a particular set of values and beliefs. They believe this does have an impact on the quality of life of a person with a disability.
Furthermore, it makes good business sense to continue to support the delivery of social services through religious/cultural organizations. Such affiliations allow access to millions of dollars in charitable giving and countless hours of volunteer work, including the commitment of active, local board members.
Our recommendation to the government would be that the government and ministry make a clear policy statement that supports the continued presence of faith-based and cultural organizations in the delivery of social services to people with disabilities so that their choices, beliefs and values are respected.
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Mr Joe Egan: The second issue we'd like to bring to your attention is around the reality of the unmet needs of people with a developmental disability and their families who are living in the community today. L'Arche Ontario fully supports the government's recent initiative, which began in the 1980s, to continue to eliminate all institutions for people with a developmental disability. However, this does not address the negative impact of recent cutbacks for individuals and their families already living in local communities.
We are in touch with many families through the eight communities we have in Ontario and it is our sense that many of these families have lost hope. You've probably heard from some of these individuals directly yourselves. For example, aging parents face considerable and growing anxiety about the adult children for whom they have made huge sacrifices to keep at home rather than place in an institution. These parents have a growing inability to meet their adult children's needs and, understandably, also have fears of what will happen to their children as they become more incapacitated and after they die.
There are similar unmet needs regarding people with a disability in the communities: young adults who are leaving the education system, people with a dual diagnosis, early intervention for infants and young children with disabilities, to name just a few.
The proposed Ministry principle of serving "the most in need" is of grave concern to most families and service providers. If this principle is used as the foundation for the emerging social services system, there will be untold problems and a continuance of unmet needs of those determined -- by whom we don't know yet -- as not being most in need.
Our recommendations would be that the ministry develop and implement a standardized tool which measures the level of support or service needed by an individual for use across the province and that family and organizational subsidies be adjusted and reallocated as appropriate; that the ministry find and promote best practices and reward them by building in incentives to reduce costs; and that the government and ministry make a clear public commitment to reinvest in the developmental sector all dollars generated by facility closures in order to continue to address these unmet needs of individuals and families in the community.
In this regard, under the current closures the ministry has identified over $13 million for reinvestment, but has not yet committed this money to our sector. Given these unmet needs, we find that this is unacceptable.
The third issue has to do with individual approaches. The present reality of financial constraints has necessitated a review and revisioning of the current social service system. We all know some savings are possible and current resources can be better deployed.
In particular, L'Arche Ontario strongly holds the position that the time has come for a fundamental paradigm shift in how the social service system is structured. The time has come to give much more control to individuals and families to make choices as they see fit in order to meet the support needs of people with a disability. Specifically, individualized funding and contracting for services is overwhelmingly the preferable option for families and organizations rather than a forced amalgamation of service providers as the basic way to restructure a new system. If consumers were empowered with the money and the ability to choose to contract directly for service from accredited providers, the current inefficiencies of the system would correct themselves.
Our recommendation is that based on the outcomes of the current pilot projects concerning individualized approaches to funding and contracting, the government and ministry make a fundamental policy commitment to the principle and implementation of individualized funding and contracting for services as the best way of ensuring choice and involvement for individuals and their families and of ensuring an effective, efficient service system.
This concludes our remarks. We want to thank you again for the opportunity to express these issues and recommendations to you, and in the time remaining we're happy to answer your questions and have a dialogue.
Mrs McLeod: I have a number of questions. I would like to be able to benefit from both your presentation and from your knowledge of the area and your experience in the community, as well as being on the advisory committee. You've raised a number of issues which, although there have been some allusions from previous presenters, haven't been perhaps set out quite as clearly as you do here; for example, your comments on the second page about the service providers in one area being combined under a single governance model and the fact that those are proposals being considered as we speak. Could you say a little bit more about the nature of the single governance model and who's proposing it, where you think that whole initiative is going?
Ms Keaney: There is one of the area offices in our province that has concluded that a single governance model would be a less expensive model to fund, so they have gone ahead and made a very lengthy proposal to go in this direction. This was proceeding at quite a rapid speed and my understanding is that it's being halted at the moment because of the knowledge -- when it reached the level of Queen's Park, there was some objection to it because we would be creating another level of bureaucracy. We would have a board that would be a superboard with less hands-on involvement in the actual lives of people with disabilities and making some major decisions for them at this far-off place.
Also, coupled with that would be a watering down of the variety of agencies that would exist. Although there might be some work that can be done in terms of bringing together some shared services administratively and so on, we really believe that the right of people to express their choice in determining what kind of service they choose should be theirs and that we shouldn't become a superagency in one locale.
Mrs McLeod: So the model that was proposed did not preclude individualized funding but it wasn't based exclusively on individualized funding then?
Ms Keaney: It wasn't even addressing individualized funding.
Mrs McLeod: So it would have been a governance model based on essentially a single governance of all existing facility-based care.
Have you heard any rumours even that a superagency or a local community single governance agency could be either the long-term-care agency that's to be set up or the community care access centres that are being established?
Ms Keaney: I've heard rumours of that. I don't know if that's accurate.
Mrs McLeod: That isn't then necessarily the direction of the single governance model that you're referring to?
Ms Keaney: No.
Mrs McLeod: I'm not sure how much time there is. If you're sitting with a question, don't hesitate to step in. I'm wondering what your funding is and what cuts you -- I assume you do get government subsidies.
Ms Keaney: Yes, we do.
Mrs McLeod: And you've had, what, the 5% funding cut that you've had to cope with, or is it beyond that?
Mr Egan: It was 2.5% and then 5% for a total of 7.5%.
Mrs McLeod: How has that affected your capacity to meet the needs of your own residents?
Mr Egan: I think in general it obviously makes it more difficult. We're all stretched to do more with less and we have attempted to do that. Nobody who was receiving service before those cuts is not receiving service today, but certainly we can't do as much as we could before. I think for a number of agencies, depending on their funding base, this has really pushed them to the edge. So any further approach of funding cuts across the board I think would put particularly some of the smaller agencies in danger of survival.
Mrs McLeod: Have you had an increase in need because of the deinstitutionalization? You mentioned specifically your belief that the government should commit the dollars that are realized from deinstitutionalization into the communities that are providing the service. Do you have any idea what that amount would be?
Mr Egan: I think the ministry has identified over $13 million that would be available for reinvestment in the community after the people coming out of the institutions were placed appropriately in the community. Right now, I believe the figure is an average of some $55,000 per person that would come with the person from the institution into the community.
Today it costs more than that to keep them in an institution, so there is going to be some surplus money that could be reinvested in the community, but at this point, as far as we know, that money hasn't been committed for the developmental services sector. It has been allocated for reinvestment in a general sense in social services but not particularly for our sector, and we do not think that's fair.
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Mrs McLeod: Just lastly, if there's still a moment, you mentioned the pilot projects on individualized funding and your interest in seeing the funding go in that direction. Do you have a sense that the pilot projects will set a base for determining what is appropriate individualized funding?
I know the difficulty is that with each individual there would be different needs, different expectations, and therefore different levels of funding. I guess one of the things that concerns me, as strongly supportive as I am in principle, is, does it become that much easier to simply reduce the overall funding that's available and stretch existing dollars to meet a constantly increasing need? That's what we've seen with the special services at home program. It doesn't look like the dollars have been cut, but they're trying to meet greater needs with the same amount of dollars. Are there ways in which the pilot project can be a base for setting guidelines that would ensure that individualized funding models provided adequate funding and weren't just a way of cloaking inadequacy?
Ms Keaney: I'd like to believe that's true. From all the reading we've done and with the experience of Alberta and so on, I think there are things we have learned that we don't want to repeat, but I do believe that a standardized tool for assessing levels of care can be appropriate for our sector and determine just causes because I think we see abuse in every system in terms of dollars being duplicated in some cases and being very inadequate in other cases. That's our belief, that it can work.
The Chair: Thank you very much. Third party.
Mr Egan: Can I just add to that for a second? I don't think the ministry has yet had all the information back from these pilot projects, so I don't think the ministry has drawn any conclusions yet from them.
Mrs Elinor Caplan (Oriole): One small, short question --
The Chair: You're way over the limit. Sorry.
Mrs Marion Boyd (London Centre): Thank you for coming today and for giving your views. I've only been to one of your communities, the one just north of Toronto, and I must say I think you rather understate the difference in the way you live and work with your residents, your members, as compared to some other facilities because it really is that mutuality and that sharing of a home that is a very different kind of aspect than most of the facilities we see. We tend to see more of a professional professional-client relationship, and you try to avoid that to the extent that is possible, although always recognizing that one has more of a role of a caregiver than the other. That's really quite impressive.
I want to tell you how impressed I was and that I think it is a model that should not get lost. I guess that's what worries me about this notion that you can suddenly find a template for care and then place it over every kind of institution and come out with something that has a so-called equality to it, but in fact only has a sameness, which has nothing to do with real equity. I wondered if you wanted to comment a little bit more about how you see the necessity for that divergent way of offering services because I think that's a very important aspect of what you do.
Ms Keaney: I'll begin. This is an easy part to tackle. I think through our model those of us who live with handicapped people or people with disabilities, and certainly I have done so for 20 years, have to say that what we keep discovering is how important a person with a disability is in our society.
What we learn from them is far greater than any books or university can give us in terms of a value system for our lives, so it is very unfortunate when we push aside people with disabilities for other causes, because I think what keeps on coming to the fore is that a society is identified by its value system as to where it puts its money. If we could stop and if we could do anything for the society, it would be to push forward more the people with disabilities so that we become a more human society and we have that care level for one another that dispels all kinds of other violence and warfare with one another.
I guess if I were to sum up in one sentence what it means to be in close relationships with people with disabilities, it is that it's a very important and fulfilling way to live. I think anybody who comes in contact with these people who would take the time would certainly recognize that fact.
Mr Egan: I would just add that it's certainly been our experience in L'Arche, and I think it's certainly the experience of families who have children with a disability, that they need extra support. There's no question about that. But what often is not recognized is the gift side of that reality, that when we're open to receiving the gift of people with a disability and in relating to them in a mutual way, there is a gift for our lives as well and a gift for society. The whole thrust of bringing people out of the institutions and having them in the community is an important one not just for their lives but for the fact that as a society in Ontario we need the gift that these people can give.
Mrs Boyd: I guess the whole notion of the assigning of a hierarchy of needs then really flies in the face of that, doesn't it, because this whole issue of you only serve those who are most in need really calls into question how we look at people and how we would ever make assumptions about whether one is more valuable or more needy than another.
Mr Egan: That's right, and who makes that decision?
Mrs Boyd: Yes, and on what criteria?
I must say I've had a fair bit of experience with one of the pilot projects on independent living and it seems to me that we have a great deal to learn from the way in which those projects have developed and the way in which people have learned the very great care that people bring to using the resources in the most effective way. I think that's what has impressed me more than anything else. Has that been the sort of experience you've had?
Ms Keaney: It has been, and that's the positive side. The negative side is that, in our experience and not in every case but in several cases, for people who have a great deal of autonomy and can function and like that lifestyle, it's great, but many people, even though they can make it on their own in terms of providing for themselves, feeding themselves, getting out to work, are very lonely.
The Chair: Thank you. We'll go over to the government side.
Mrs Julia Munro (Durham-York): Thank you for making a presentation. When you have the international flavour obviously to your organization, and much has been made of the need for some kind of model to establish level of support and recognizing the differences of needs, I wonder whether in that recommendation, from your experience in the international scene, there is a model. Do you see areas which have taken this approach that you are suggesting and provided a kind of model?
Ms Keaney: Are you referring to individualized funding?
Mrs Munro: Yes. I think it's your recommendation 2 and you refer in the recommendation "That the ministry develop and implement a tool which measures the level of support." My question then is, given your expertise and the international nature of your experience, where do you see that? Is there a tool? Is there a best practices?
Ms Keaney: No. I think in North America, and correct me if I'm wrong, Joe, we're probably further ahead in implementing that kind of a model. We don't see that happening in Europe or other places where we have several communities.
Mrs Munro: Just one other question, if I might. What's the size of a L'Arche community?
Ms Keaney: They vary from approximately 15 to 20 people with disabilities to 40 in one locale.
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Mr Egan: That's in a number of different houses, though.
Mrs Munro: Thank you. I think there are other people.
Mr Derwyn Shea (High Park-Swansea): First of all, let me thank you for your presentation. It raised a number of questions in my mind, and you caused me to focus on one question that concerns me as I listen to the deputants. I have a sense, as I read your document, that there is a tension -- it may be creative, it may not be -- between systems that are at play right now. It may be families and facilities, it may be institutions and home care, it may be community services or health ministry and so forth. I have a sense of silos that are not always necessarily helpful to each other, and that's not because they're deliberately trying not to be helpful; it's just something that happens.
You cut to it when you raised the question about parents who are particularly concerned about what happens to their children when they, the parents, die, and that is a very natural and a very sensitive concern. I wonder if you can respond to a sense of a model that might allow for the assistance from both ministries to be helpful. How do you begin to bring that together in a way that's helpful for the disabled person?
Ms Keaney: With health and community and social services, those two ministries?
Mr Shea: I asked it advisedly, yes.
Ms Keaney: I wish I had the answer, but certainly that is a dialogue that has to continue: who has what responsibility. You talked about the two silos and tensions and so on, and some of the tension is creative, but I think what's happened in systems is that when we were in good times with money, people got along fine, but now with the cutbacks people are vying for the same dollars, and that certainly comes out even in a cooperative model.
Mr Egan: If I could respond quickly to that, I think the fundamental shift that's needed is to give the power and control to individuals and their families. If they really had control over the money and could go where they wanted to go to find the services they need, a lot of the interministerial silo problem I think would disappear because the families would make it disappear by taking the money and going where they want to go with it.
Mr Shea: Yet there needs to be some kind of stability for the institutions as well, some basis upon which they can predict the horizon and what the demands on them will be on the horizon.
Mr Egan: I think the ministries would have to set certain standard practices and accredit service providers and so on. That would still be a provincial responsibility.
Mr Jack Carroll (Chatham-Kent): If we go forward with your model of funding the individual, is there enough money in the system currently, if we restructure it, to take care of all the people who need services?
Mr Egan: We don't have that information. I'm not sure the ministry does either.
Mr Carroll: Basically I'm looking for an opinion more than anything else. If we restructure and go to the model you're talking about of funding the individual rather than an organization, is there enough in the system to take care of people who really need help, in your opinion?
Mr Egan: I would probably say no. I think it would start to address the issues of equality and justice, though. Right now there are approximately 50,000 people with a disability who are getting some funding from the government, and an estimated 100,000 people in the province have disabilities. Just using those numbers that have come from the ministry, it's probably fair to say that more money is needed.
The Chair: Thank you very much for being with us today and for your very informative presentation.
INCOME MAINTENANCE GROUP
The Chair: I call upon the next group to come forward, the Income Maintenance Group. Can we be of some assistance?
Ms Marilyn Ferrel: No, thank you.
The Chair: Okay. Take your time. Would you identify yourself for the committee, please, and begin.
Mr Scott Seiler: Hello, my name is Scott Seiler. I'm the coordinator of the Income Maintenance Group.
Ms Ferrel: I'm Marilyn Ferrel, chair of the Income Maintenance Group.
Ms Beth Brown: My name is Beth Brown. I'm a researcher at the Daily Bread Food Bank, and we're also a member of the Income Maintenance Group.
Mr Seiler: I think I'll start by introducing the Income Maintenance Group. The Income Maintenance Group has been a coalition of service providers and consumer organizations since 1978. Our members range anywhere from the Canadian Mental Health Association to the Daily Bread Food Bank to PUSH Northwest to many other different organizations as well as serving and representing people with disabilities.
I'd like to start out by talking a wee bit about the overall cuts that are going on within the government of Ontario towards people with disabilities around social assistance. That's the primary area we in the Income Maintenance Group are interested in, although we touch on other related issues that help support people with disabilities in the community, such as the assistive devices program and many others.
In Ontario, since this government has been elected, we have been seeing fairly dramatic and large changes happening within the system of social assistance for persons with disabilities. We are seeing more people who are not being allowed to get on the FBA and we're also seeing many people being removed from the FBA system and shoved back down either on to the general welfare system or out on the street, literally. I think our growing street population is a very solid indicator of that, and even the Canadian Mental Health Association has backed us up on that simply by saying that 70% of those people who are out on the street have a disability which is a mental health problem. We're really seeing some dramatic cuts to people with disabilities.
We've been able to do a survey for our purposes, and it was meant to get a snapshot of what was going on across the province. We sent out about 100 surveys and got back about 37 of the 100. It showed in some areas, including the Premier's own riding, that people with disabilities are being removed from FBA and shoved down to the general welfare program, as well as in London, Kenora and many other areas. These things were reported by legal clinics, social service agencies, AIDS committees. The people being cut off are actually people with HIV and AIDS, people with epilepsy, in some places people with developmental handicaps and many other different types of disabilities, primarily ones that seem to be hidden and hard for people to realize that people actually have those particular disabilities. That's basically what's going on.
For instance, I polled some of the municipalities within the GTA. I phoned the Peel region social services department and they told me that their pending unit to go on to FBA dealt with approximately 1,100 people in 1995 and that about 60% of those people got on to the family benefits system. But last year in Peel only 40 people out of 400 got on, so that's a very large difference between the two years.
We've also heard, and it was reported in the House and it's in Hansard, that Durham region has produced a report that also backs up this same premise that people with disabilities are not getting on to FBA like they used to. They're spending more and more time sitting on general welfare and they are subjected to the 21.6% cut in welfare benefits and are suffering tremendously because of that cut in benefits. Those people who are being removed from FBA and going back on to general welfare are also suffering those cuts.
The number of people who are being cut back is quite dramatic in some areas. For instance, up in the north we know of one legal clinic that has dealt with 20 people in the last three months who have been removed from FBA and now are either having to go back down to general welfare or are having to live with family or friends as a result of that.
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Ms Ferrel: The IMG is concerned about several cuts to social programs -- the Ontario drug benefit, for example. There is now a $2 prescription copayment. We are looking at people who are psychiatric survivors and only on welfare who are now expected to pay $2 for each drug when they have to go to food banks to pay for food. I know of one person who was working, lost her job, and when she went on welfare her drug was delisted. Without this she could have taken other drugs, but those drugs caused her to have a seizure at least once or twice a week, which would heavily curtail her employment plans, her opportunities for employment. The drug she needed was delisted but it prevented her from having any seizures.
We're concerned about the family drug-dental plan, which now will offer only basic service. What about persons with epilepsy whose drugs cause gum disease and they need an operation every four years? I myself am concerned about the assistive devices program. Now you can only get a scooter if you need it to get around your own apartment. How you get a scooter around an apartment I'll never know. For me a scooter means I can get to work, because I can no longer depend on Wheel-Trans because of the cutbacks. If I have to walk to a store I can carry two items home. Does that mean I have to walk to the store twice a day to feed myself?
There have been other cutbacks to the assistive devices program, such that people who need oxygen can no longer get it. Those who have many needs for assistive devices get less than 75% of them paid for.
We are also very concerned about the proposal to have social assistance, both welfare and the proposed guaranteed support plan, paid 50% by municipalities. We understand that this will be paid through property taxes rather than income, yet people who can afford taxes usually have higher incomes than they do property values.
As a result, this gives the municipalities an incentive to devalue disabled persons further, cut them off the more expensive guaranteed support plan, or FBA as we know it today, and as a result people will be expected to do workfare and yet not have the accommodations they need. Many people would like to work, but what happens if they can't work full-time or if they have a seizure on the job? Are they going to be cut off welfare? These are our concerns.
As Scott mentioned, we have a number of people with disabilities dying on the streets now. What is going to happen in the future?
Ms Brown: I was invited to come today to talk a little bit about something that we've been noticing that Marilyn and Scott have talked about, which is people's reactions to what has happened to the welfare system and the worries and concerns for the future of those who are on the family benefit system, so a lot of the stuff you probably hear in your own constituency offices when you go back to your ridings, people's situations and worries about their future. Marilyn has really highlighted those, I think, effectively today.
We have four stories that I brought from our Telling Our Stories project.
One of them is about a man who is 51 years old, currently on family benefits and a butcher by trade. He's had a string of health problems, not the least of which was acute depression and a stroke that he just suffered. He has also had a couple of leg operations because he was run over by a truck in his earlier career.
He's currently on FBA and feels that this has really been the bridge for him to get through a lot of tough issues. He's overcome alcohol and drug dependency. He's been sober for three years and he really thinks that the family benefits system has helped him survive. As he puts it: "Without family benefits I wouldn't be in a recovery home. I'd not have enough money to survive and I'd have to turn to crime." He'd much rather be working right now.
His story is that he worked for most of life since he was 12, completed an apprenticeship and worked until five years ago when his illnesses were too much for him to work. People find out about his abilities and experience and are quite keen to hire him, and then they find out that he's over 50 and their interest in him wanes. His story is the story of a lot of people who volunteer at the Daily Bread Food Bank and also who are members at community agencies, volunteering all over Ontario. In fact, in two out of these four stories, people volunteer their time when they can.
The other story is from a woman who is living on family benefits right now. She says, "I've done some vocational rehabilitation and still cannot get hired for a salaried job. But for the past two years I've done volunteer work for three to four days a week, two hours a day, but I tire easily and cannot use my hands. I have angina, which my medication does not always help. My concern is that if the government reviews my status and sticks me on regular welfare, I would not be able to set any money aside for emergencies, such as a large hydro bill in the winter, or legitimate expenses, such as warm boots in the winter, a winter coat, allergy or flu medication which is not payable through the drug card."
This one was short and sweet. Someone wrote in and said: "I am a single person on family benefits. I'm male. I'm currently just able to live with dignity and would lose my independence and ability to pay my rent and live if they cut me off assistance. I want to be able to live and pay rent."
One of the other ones we got in the mail showed us that family benefits is really doing what it was intended to do: "Family benefits have kept me sane. I do not worry about paying my rent or having food money. Before, when I was on welfare and before the cutbacks, I used to beg for coffee money and eat garbage from the food stores, cutting out the bad parts.
"Since the cutbacks, I have no money because I buy shoes and food for people I know who are on welfare. If FBA is reduced, I will have to eat Kraft dinner and other unhealthy foods so I can afford to share my meals with friends. Also, I don't know how I'll be able to buy shoes for friends any more and they may become very sick because I won't be able to take care of them. I'm worried that I won't be able to volunteer to do any more work as well. You can expect us to help each other, but it's making it difficult for the poor to be able to help each other, except the rich with their tax breaks and they're spent on vacations," and other things that they spend on like golf.
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Anyhow, his assumptions were that if there were changes, there would be some bad impact on him personally, but also generally the welfare cuts from his point of view -- he's supporting other people who had their welfare cut, but he's on family benefits and doesn't need the same types of supports.
From a food bank point of view, we don't see a lot of the people currently on family benefits because the amount of money they're making is just enough that they don't need a food bank. We're hoping that trend continues and that we don't start seeing disabled people through our doors in a high number.
We'd just like to stop there so you can ask your questions of Marilyn and Scott.
The Chair: Thank you very much. We have 12 minutes left. Mrs McLeod for the official opposition.
Mrs McLeod: I think it's perhaps the New Democrats' turn.
The Chair: Yes, you're quite right. My apologies.
Mrs Boyd: Thank you all for coming. It's very good to hear from people who have the kind of experience that you all share in terms of this kind of issue. I was very interested to hear that you had done a survey and that you were finding what I certainly am finding in my constituency office. I've had a number of different families come forward who have suddenly found themselves, even though their conditions are worsening, being cut off FBA and put back on welfare and it's quite inexplicable. I know our legal clinic has been finding the same thing. So just to confirm that kind of trend, I think it's quite distressing.
When I listen to all of you, what really impresses me is that it isn't just one thing that has caused the problem. It's the accumulation of thing after thing that has really made it very difficult. Do you want to comment on that? I think the impacts are magnified each time they hit.
Mr Seiler: Sure. One of the issues that makes that happen is that the systems are very interconnected and when you touch one part of the system, there are ramifications to other places within the system. For instance, I would suspect that as the cuts go further and further, we are going to end up seeing more and more people hitting the food banks, because rents are still going up, everything is going up except for the amount of money people get on social assistance, disabled or not.
What's going to end up happening is that eventually all of the user fees that are going to be asked to be paid, all of the copayments that are going to be asked for, all of these things have a cumulative effect and it's whittling down on a pension that just barely makes people get by today. That's really what the cumulative effective is doing, but it's over a massive amount of time and it's a lot of things thrown in there together.
Also we're having people who, because of the stress they're facing, are facing more health-related problems. It's harder for people to get to work because of things like Wheel-Trans and other issues such as that -- and Wheel-Trans is not the only place that is happening. It's happening all across the province with accessible transit. We're even seeing cutbacks coming with the TTC. For people who are able to ride the TTC, simply paying for a TTC pass will be impossible for people on social assistance, and if that's the case, how are people to find work, those who can? The kinds of things that are happening are such as that.
Marilyn, you had something you wanted to add?
Ms Ferrel: Yes. My greatest fear is that people will not be able to survive. People are going to food banks now, people are living on the street and, as we know, people only live seven years on the street before we find them dead. What is going to happen with further cutbacks?
I myself am scared stiff that I will lose my subsidized rent. What will happen then? Some psychiatric survivors, we're hearing, have committed suicide because the cumulative effect has been so devastating that they see the future as impossible.
Mrs Boyd: I certainly have heard the same thing. Mission Services in London offers some programs for people who have mental disabilities and they're finding that the $2 fee is enough to completely discourage people from taking the medications they need in order to be productive.
Mr Seiler: Yes, it's very common.
Mr Carroll: Thank you for coming to give us your input today. I'd like to talk with you a little bit about the system. We had some people last week from Metro, from an organization called MARC, and that's an acronym for Metro Area something or other. They were an umbrella organization that coordinates services of 52 government-funded organizations that provide services to 5,000 developmentally disabled people. I asked a question of that group of people. I said the numbers, to me -- 52 organizations, controlled by another organization, giving services to 5,000 people -- if that wasn't part of the problem, that the 52 CEOs and the 52 organizations we were supporting were taking up so much of the money that there wasn't enough left there to take care of the people we started out to serve. Could I have a comment on that about the system we're dealing with now? Is it as efficient as it can be or do we have some place to move to make it more efficient?
Mr Seiler: I can answer that. There are always efficiencies that could be possibly found, but the problem we really are facing here is that dollars have been withdrawn from these systems, they've been withdrawn by the government and the government is continuing to withdraw these systems. In fact, the transfer down to the municipal level, for instance in Metro and in many of the larger areas where there are very many people with disabilities, will make it literally impossible for the municipalities to provide those services and pay for those services on the tax base that they have today, because of the extent.
We need a variety of services. Something that I think you're missing in the number of services you're counting there is the whole variety of things that those services do. They do not all duplicate each other; that is not correct. In fact, they do a whole multitude of different services. If we went into a service provision system that was based on the user of the service getting the money and then going out and buying the service from an agency or organization, I don't think those numbers would be smaller. I think if you went into a free market enterprise and gave the money directly to people, you'd probably end up with a larger system of service providers and more people vying for the services than even today.
Mr Carroll: You think there is some inefficiency in the system, though?
Mr Seiler: I think you could always find inefficiencies everywhere, including inside your own government.
Mr Carroll: The 5% funding change that we made, do you think there was 5% efficiency that could have been found in the system?
Mr Seiler: It's 7%, excuse me.
Mr Carroll: It was 2.5% annualized to 5%. Was there that much --
Mr Seiler: No, there was 2.5% and then 5% on top.
Mr Carroll: Okay, whatever number you want to choose, was there that much inefficiency that we could have found in the system?
Mr Seiler: To be very honest with you, our last government frankly bore out most of the inefficiencies. If you want to go further into inefficiencies, then you're going to have to be doing a completely different, new model, which is something like the direct funding model.
Mr Carroll: And you subscribe to that type of model?
Mr Seiler: Yes. I think there are some very strong merits to the direct funding model, because it gives the control back to the consumer and if the service is no good, then market forces operate and people don't go and use those services.
The Chair: Mrs Johns, you have one minute.
Mrs Helen Johns (Huron): I just had a question about the drug benefits. It was my understanding that this government hadn't delisted any drugs and in effect we had added more drugs to the drug formulary. You were commenting that some of the drugs that I think you or a friend were taking had been delisted and I was just interested in hearing about that because it's not my understanding that's happened.
Ms Ferrel: There was a delisting of drugs under the NDP and I don't think they all have been reinstated, and I'm hearing that a lot of people who are not eligible for it are really having a hard time. I know someone on CPP who gets the minimum of CPP and spends half that on drugs. So drugs are a real problem for people on welfare and people not eligible for FBA.
Mrs Johns: I just want to say that the government has listed 372 new drugs on the drug formulary since June 1995. Thank you for that clarification. I appreciate it.
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Mrs McLeod: I do hope that when Mr Carroll asks whether or not a 5% reduction is manageable with no efficiencies, he's also prepared to consider the unmet needs of the several thousand people who have been identified to this committee as not getting any support at all yet because the dollars haven't stretched to those individuals. I think that's a really critical issue whenever we talk about the support for individualized funding, to recognize it can't be done solely with the dollars that are currently in the system because there are so many individuals whose needs are not being addressed with any support at all, including the thousands who are at home with aging parents and the parents wonder what they're going to do.
I'm not sure where to begin to ask the questions. I appreciate the presentation you've made on all the effects of the cuts that have taken place to date. When we originally called for the hearings, it was exactly that we wanted to look at, the effect of the cuts. Supposedly there haven't been cuts. We know there have been and we wanted to try and bring out what the effect is.
You've touched on the fact that mega-week introduces a whole new set of challenges, so maybe I'll start there, and if it's unfair, please tell me, because I'm not sure how much time people have had to think about the implications of some of the funding shifts. One of the ones that concerns me particularly is social housing. I'm wondering if you've begun to think about potential ramifications of the municipalities having 100% of the responsibility for social housing, including all the rent-geared-to-income units and including all the special care beds for the psychiatrically disabled in the community.
Mr Seiler: I think it's going to have a dramatic effect. I think it will spell the end of social housing in Ontario, not only in the municipality of Metro Toronto but in every other municipality in this province. There is no possible way they could ever afford the upkeep on the buildings, let alone pay for the actual subsidies to the rent through the property tax system. There just is not enough money being raised through property taxes today to do that.
Another huge issue for the Who Does What announcements that happened last week, or two weeks ago now, I guess, is the entire issue of the downloading of welfare and social assistance. Frankly, we think very strongly that this will also be a very detrimental thing to people with disabilities. As Marilyn has suggested, there will be a disincentive for the provincial government and the municipalities to put anyone on the higher and more expensive system and there will be an incentive to dump as many people as possible.
The estimation I would give at this particular time is no different than the estimations I gave last year to other committees in this province doing this type of work, which is that about 100,000 people will be removed from family benefits and not put on to the guaranteed support plan, and these people will be subjected to general welfare and workfare.
Ms Ferrel: I would like to add, if subsidized housing is taken away, how are people going to survive if they are put on general welfare and they need to pay hydro costs? I don't think people understand the frustration of surviving as a disabled person, as it is, on a psychological level. They take away our income, our housing and put us on the street. What do you expect us to do? It almost reminds me of Germany in the 1940s.
The Chair: Thank you very much for your presentation, and thank you in particular, Ms Ferrel, for a very heart-warming, firsthand account.
Our next deputation is from the Ontario Federation of Labour. Are they here? If not, we'll move on.
GREAT LAKES SOCIETY FOR DEVELOPMENTAL SERVICES OF ONTARIO
The Chair: The Great Lakes Society for Developmental Services of Ontario: Are they here? Terrific. We'll give you some time to come to the front. Thank you very much for being with us.
Mr Geoff McMullen: Good afternoon. My name is Geoff McMullen, and I'm executive director of Developmental Services of Leeds and Grenville in Brockville, eastern Ontario. I'm the president of the Great Lakes Society for Developmental Services of Ontario and it's in that capacity I'm here today. Joining me is Dianne Belliveau. Dianne is the executive director of Brantwood Residential Development Centre in Brantford and is also an executive member of our society.
We appreciate the opportunity to appear before you today, but we recognize that it's been a long day, that time is moving along, and we'll try to be brief and to the point. We will begin by giving you a profile so you know what the Great Lakes society does, who we are and what we represent. We will then move to a main presentation on the impact of the Progressive Conservatives' funding actions on individuals and families served by our society.
As mentioned before, we will leave quite a bit of time, hopefully, for questions. I had said to Dianne earlier, "If I do the presentation, you can handle all the questions." I won't say what the remark was.
The Great Lakes Society is a provincially incorporated body of agencies which provides client services to developmentally challenged persons and families across Ontario. Our members cover distinct geographical areas throughout this province.
The 14 member agencies that compose the society serve over 1,100 adults and children in a continuum of residential programs. These range from congregate care settings, which are known as schedule 2 facilities, to family home care, associate and foster types of home care programs and supported independent living. We also provide over 7,400 clients with professional support services, individual and family support services and day supports. We operate with a combined budget of close to $90 million of provincial subsidy and employ over 1,600 full-time-equivalent staff.
The society's members have worked in partnership with government for over 30 years in promoting optimal service delivery for Ontario's developmentally challenged. Over the years we have kept abreast of changes in philosophy, program and service delivery and education, and remain on the leading edge of contemporary and innovative service provision.
We are guided by a volunteer board of directors who bring diverse community opinions and a broad range of expertise. We have maintained a degree of rigour in professional health services and program standards, and our staff tend to be highly trained, experienced and career oriented. In short, we represent a considerable level of expertise in Ontario in the field of developmental services, and I could say, after mentioning the $90 million, a considerable amount of money spent in that field as well, as you can appreciate.
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I have attached three pages with further detail for you in the appendix that you can look at and see where the agencies come from. Basically, we're represented from the Quebec border through southwestern Ontario and into northern Ontario. The agencies are somewhat different, but all servicing that particular population.
To look at the impact of the Conservative revolution from the society's perspective, I have to again caution that our bias is that we are service providers and we come from that; on the other hand, we have had valuable experience and have been in this field for many years.
The Great Lakes Society supports the provincial government's attempts, certainly, to deal with Ontario's economic woes. We all recognize the need to do that. We applaud the commitment to protect the most vulnerable members of our province; I think that's been stated to us time and time again. However, it is clear to the society that the developmentally challenged citizens of the province are those who have had no hand in creating the financial hardships for the government and who cannot, of themselves, correct the problem and may pay -- I say, may pay -- an inordinate price.
Many of the clients served by the Great Lakes Society are the most profoundly challenged. In addition to cognitive delays, our clients have additional, and often multiple, presenting problems. Severe physical handicaps, medical fragility and mental illness coexist to make service provision an extremely complicated and costly venture.
In general, the impact of funding cuts across the agencies, as well as on the individuals and families we serve, is varied. Those who are more resilient, have a broader system of supports and strong coping abilities have experienced minimal impact to date. When I say that, those are those who are already in the service system; we'll speak later on those who aren't. The cuts certainly have made all of us become more resourceful. As agencies, we have had to learn to do business differently, while maximizing existing resources to client services. The fear is that we are now on the edge of tolerance in a climate of increased demand and stretched capacity. Only history will tell us what the cumulative effects of reductions have really meant.
Specifically, the fiscal constraint imposed on the society's agencies over the past three years has led to service reductions and unemployment. Service reductions have taken the form of larger client-staff ratios, longer waiting lists for professional interventions, elimination of programs and cancellation of staff training and so on. In many instances, wage rollbacks, reductions of hours of work and layoffs have been directed at those who care for our most vulnerable citizens.
That said, also with the cuts, and as we've done business differently and learned to do business differently, there's no doubt that there have been administrative cuts, that probably it was a wake-up call for many of us. By doing business differently, that's where many of the cuts came from. I think the efficiencies in many areas have been shown without touching moneys going into direct service, so there are two sides of the coin as well.
When we talk about quality of life, it's a concept that's difficult enough to reach with sufficient financial resources available; certainly it's been eroded. However, throughout this process we have made a number of observations. We would like to share some of these observations with you and challenge you, during your continued restructuring of service delivery and funding, to pause and consider not only the direct impact, but also the cumulative and ripple effect. We would hope that prior to further cuts or restructuring decisions in all services, you pause and ask, "Will this impact on our most vulnerable citizens?"
Although we have always known that the developmentally challenged represent a disproportionate number of consumers who use the health and social service systems, today the reality has never been more evident. We know from the literature that those we serve have a higher than average incidence of mental illness, are more likely to be victims of violence or sexual assault and have increased medical needs. It is only in the last few years that we have understood such issues as Alzheimer disease being not only more prevalent in our population, but having a much earlier onset in some of the people we serve.
A number of issues that are coming to light include longevity, and I'll mention later about longevity in life. We didn't see in Alzheimer's, for example -- people with Down syndrome are the people who are now suffering it earlier. We're talking about onset around the age of 50, when they are still home with mom and dad. People 15 or 20 years ago didn't live to that age. So we're seeing more of the issues of longevity as well.
Reductions in other areas of our social, health and education can and do have an impact on the developmentally challenged members of our province. We've taken a couple of examples, one being in the health field. We certainly see a higher incidence in physical and mental illness, an extended time necessary for diagnosis, and more complexity in diagnosis and treatment. When you're talking about mental illness and physical health, that means they're going to show up at the general hospitals and the psychiatric wards proportionally more often.
Extended time necessary for diagnosis: the time that a GP, for example, would spend with someone who has little to no communication trying to figure out what's wrong, and then of course the complexity with the diagnosis and treatment. We find it's getting tougher and tougher at times to find the appropriate professionals who want to support the clientele we support. With these realities, we know there is direct impact when services are reduced. The impact certainly is magnified when you have a disproportionate number of persons using the service. For the developmentally challenged persons of Ontario, we certainly don't think this is fair.
We look at a second example in education. Again, we're not denying that restructuring is necessary, but there are dangers for students with special needs when the focus is on classroom-based budgeting. We know that to receive an appropriate education, children with developmental challenges often need the support of specialized professionals, such as speech and language pathologists, social workers and behaviour therapists, who are not in themselves classroom teachers. A developmental handicap is not subject to a quick fix. It requires a lifelong series of interventions and supports from trained specialists. So restructure educational administration, board catchment areas and taxes, but please ensure professional supports to developmentally handicapped students are not diminished across the province.
Similar examples could be provided in other areas such as corrections, victim services and housing. Unfortunately, in times of diminishing resources, history has shown it is precisely these services that are reduced because the investment in time and resources per capita is judged to be too high.
We would also not rule out prioritization relative to the complexity of people we serve. To be clear, we believe some systems will choose not to serve the developmentally handicapped population if given a choice. We have seen examples of that before, that when tough times come, it's somebody else's job. It's not health, education, whatever; it's the other system's to look at.
In review, you may say that the developmental service sector has survived the government's direct cuts with minimal impact, and you would be partially right. I think when we look at other fields, we do say that at times ourselves. But I get back to the point that we're talking about those people who are already in the system, not those people who haven't entered the system and who have service needs. What you must remember is that direct cuts to services for people with developmental disabilities have stretched the limits of a system of supports that has historically been underfunded. Historically, agencies have not been able to keep up with the demand for community supports and services.
Moreover, the gap between identified needs and available resources is widening as the funding base of agencies is slowly being eroded while demand for supports and services continues to increase as a result of improved life expectancy, a greater awareness of complex problems in people with developmental disabilities and a process of deinstitutionalization. We as a society certainly support the move of deinstitutionalization and work closely with those institutions that are moving people out.
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We certainly have more specific pressure points that we face daily. These are areas that are not in this service in many ways that are pressuring on the service.
The aged parent with the adult child whose needs have increased at a time when the capacity of the parent has decreased: We're seeing parents who have always had their children at home -- when I say "children," now they're adults and you have a 55-year-old or a 60-year-old with a 75-year-old or 80-year-old mother type of thing. I imagine some of you get those knocks and calls at your door on a regular basis. It always amazes me. I think we have a lot of services across this province in many ways, but there are still those families out there that have done it themselves and are now reaching the point where they need our help.
Another area is the children, many with complex and expensive service needs, who have been crown wards of the child welfare system and now will require lifelong supports from the developmental service system. We're seeing more of these children coming through, apart again from our ability in the health field to maintain children and life. As late as this morning I was planning for a young fellow who is going to be 21 and will be leaving the child welfare system. He's been a crown ward since he was a baby, so we're trying to plan and to find out where services and supports will be. To date there is nothing, and that's only one of many.
Then there's the youth who are graduates of our integrated school system who have little to no prospects of paid or volunteer work. They are a group who have come through the system. They have not entered the institutions. They've gone through the school system and done extremely well; the school has integrated them. But 10 years ago, when we were talking about kids coming through and getting out and finding employment, we weren't talking about an employment market or a complex market that we have today. For many of these, to learn one skill, rather than multiskills, would be something. What we're finding now are parents who are themselves with a 21-year-old at home who had been going to school every day, two people working. What do you do? You run into those situations. Again, I imagine some of you have heard of them.
In summary, our challenge to you during this time of social change and economic restructuring is to be vigilant in ensuring that the stewards of change protect the most vulnerable members of our province. We have no cure for developmental disabilities, but we do have the ability to provide a quality life within our communities. We know many will need our supports to a varying degree not only as children but throughout their life. The Great Lakes Society is committed to working with the government in meeting these demands and challenges.
The Chair: We have 13 minutes left. Mr Carroll for the government side.
Mr Carroll: I guess based on the deal that you folks made at the beginning, Ms Belliveau now gets to answer all the questions.
Mr McMullen: Sounds okay to me.
Mr Carroll: I really appreciate your thoughtful criticism. It comes from the heart and there were some very good ideas in there. One should understand that as members of the government and the Conservative caucus, we also are very much interested in protecting and being diligent and taking care of the most vulnerable members of our society. That very much is a priority of ours, so please don't have any fear about that.
You made some comments about how this whole area has been historically underfunded, and you talked about the increased demand and the waiting lists that this has produced. While we've historically underfunded this area, we have accumulated $100 billion worth of debt in our province, so it's not like we paid our bills while we were historically underfunding this. We didn't even pay our bills. Now we're at a crossroads where we've got some people coming to us saying, "Deinstitutionalize." Other people are coming to us saying, "No, you've got to keep those institutions there," people coming to us saying, "Individualized funding is the route to go," other people coming and saying, "No, we should have block funding for organizations."
I'd like to have your thoughts on this: Is it time to fundamentally redesign the system, and can we redesign it so that we spend more money taking care of the people we started out to serve and less money on the bureaucracy and the complexity of the system?
Mr McMullen: I guess my first thought in response is that I know of all the challenges that are coming in: "Do the fix this way" or "Do the fix this way." I personally don't think there is an easy fix to this; it takes two or three major changes that we'll need.
In regard to the bureaucracy, I think some of the cuts have been there and have worked to help with the efficiencies. More control by consumers may help. I think we're into a climate now where we've had a major philosophical swing in our field, from one of, if one has a developmental disability or a child with a developmental disability, the government should look after everything, and I think the pendulum has swung and we're realizing that every family has their responsibilities and the balance is there. That certainly has happened over time.
In regard to efficiencies, I know a group of organizations in our area brought in the Queen's business school to take a look and show us where efficiencies could be made, and we made some of those. So there's no doubt there is a need there.
The shift to community living from institutions I think has to be taken, well planned, well thought out, but it's a direction that's happened across North America and Europe and we certainly are in support of that. You do need solid services in your community to do that, with a balance of community responsibility as well.
Mrs Munro: One quick question, and I guess it relates back to a couple of the points Mr Carroll was making in terms of the fact that in being here and hearing the responses of various groups, obviously you get the sense of those who see this as the route to go and so forth.
My question then is, what is your response to those who would advocate a consumer-focused delivery model? I guess my question comes also from the information you provided in terms of the fact that your organization is primarily a funded organization. So am I correct in assuming that this notion of a consumer-focused model would be a significant shift in the way in which you have been accustomed to operating, and what would be your response to that?
Mr McMullen: You can tackle that one, and then I'll pick up.
Ms Dianne Belliveau: To answer your last question, yes, it would be a shift in how most of the members of the society presently provide service. I don't know that it would be unwelcome.
In answer to your other question about different groups coming and saying, "This is the answer," I think that as a society, we believe there needs to be the whole continuum of services; there needs to be a whole bag. There isn't necessarily one answer across the entire province. There isn't necessarily one way that's going to be the fit for everyone. There needs to be a diversity, but at the same time I think you can offer that diversity in a better-structured program so that the actual resources are being put down in the front line to services.
Mrs Munro: Would you support the consumer-focused position taken by others?
Ms Belliveau: A consumer focus, yes.
Mr McMullen: A consumer focus and more consumer control over what service they get and where they get it, we certainly would support. Interestingly enough, as I say that, we as an organization handle a lot of special needs agreements, so people buy the service from us, and if we don't give good service, they leave.
That said, I was speaking at another group about a year ago in regard to consumer control and talking about customers, who your customers are, and a gentleman stood up partway through and said: "I'm one of your customers too. I'm a taxpayer." So I guess there's a balance along the way that brings in the reality.
We strongly believe that consumers should have more control, but we also have to have that range of service, so I would not personally support, "Here's the money; now go get it." There's a balance in there.
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Mrs McLeod: I wanted to first get you into the whole issue of understanding the unmet need that's out there and what must be a growing competition in terms of those who are providing service with those who are wanting to provide care at home and looking for the individualized funding, and the pot of money seems not only stable but in fact declining.
I guess there are a couple of things I want to ask you. First of all, one of the things that I get a sense of is that the cuts that agencies have experienced have taken away any flexibility they had to provide support for alternative models even though there may be a belief in wanting to go that route, because the agencies are stretched in order to meet the needs of those who are actually resident and in their care and for whom they are therefore legally responsible. I'd like to know if that sense is accurate.
I'd also like to try and get a sense of why this seems to be a problem that we haven't dealt with before. When I first started meeting with some of the special services at home people, I wondered, have we just increased our expectation of what government can do to provide support? Somebody said to me something so basic as, "You know, there are new babies being born all the time, but people aren't leaving the system at the other end." It's not an equal in/out kind of thing that keeps the budget balanced, so there's a constant pressure on it. I'm wondering if you've got a whole new cohort of people whose needs have never been met, those parents who kept their kids at home -- inclusive education was a part of the support that let that happen -- and now are aging. That's a whole group of people who perhaps we've never had to deal with before because it just didn't exist before.
I know that's a whole bag, but I get this feeling that we keep thinking the system as it is should be able to just be changed to meet the need when in fact there are new needs that we've never encountered as a society before.
Mr McMullen: I have worked in the field for 15 to 20 years, and the issue that I mentioned, Alzheimer's, is just one of many issues. We did not see 55-year-old developmentally handicapped people in any numbers. Today it's most common. We're seeing people with developmental disabilities retiring out of day programs and workshops and that type of thing, so that's one.
Ms Belliveau: In addition, those individuals with diverse or complex medical needs are living longer and are remaining within the system and requiring additional supports as they're aging.
Mrs McLeod: What used to happen? What happened to the adult children of aging parents when the aging parents couldn't care for them any longer, or is that a whole new phenomenon we're about to face?
Mr McMullen: Part of it is something new. Another part was the move to less congregate settings in many cases. When the adult child could no longer stay at home, and it was usually mom that was still living -- our demographics at least show us that -- they would end up in a larger institution or a 12-bed group home, or in some cases nursing homes. I remember a number of years ago that it was fairly common to walk through a nursing home, especially in the rural counties, and find people with developmental disabilities living there.
Mrs Boyd: This is a very important point, because of course the demographics were not projected by most parents at the time that they would have had children who are now in that group from 50 to 70. I mean, most parents who at, say, age 45 had a child who had Down syndrome had the prediction that the child would not live beyond age 20 or 25, and that has gradually grown, so we have all of that.
I think the medically fragile piece is an extraordinarily important piece. We can save people through technology and through better medication, and we are saving them, but then we put them and their families into this very difficult situation, and many of the advocates for people who are disabled are worried that because of the pressure on the almighty dollar, having made a decision as a community that we want to maintain and that we value these lives, we might change our mind.
Have you concerns that this emphasis on quality of life, depending on how it is defined, and this emphasis on cost may impact upon the safety of people with developmental disabilities in our communities?
Ms Belliveau: It's an interesting question. It depends on what direction the cuts go. Up till this point in time I don't believe that any of the agencies we represent are at all concerned that there's increased risk to the clients presently in service. Just to use an example, our agency primarily provides support to people who are developmentally handicapped and are medically fragile. If there are continued cuts, that would change the type of support and service we could provide. Presently we have registered nurses, occupational therapists and physiotherapists, and we have very aggressive, proactive medical supports that we provide, and are thus able to keep people very healthy. If there were further cuts, I believe that would directly increase the risk to those individuals.
Mrs Boyd: Certainly that's the fear advocates have, and that if they are living independently or living with their families, things like the $2-per-prescription issue could become a very big issue in some of those families. They're really worried about that, particularly when there is a great deal of support needed that way. Oxygen issues -- I mean, there are a whole lot of issues you can cut down on one side, and then when you come to the whole issue of making determinations about the advisability of treating someone based on quality of life, as we see in the new substitute decisions legislation, I think there is some reason to be really fearful.
We know that in the past we have not always been careful of people who have been different, and the histories of our big institutions are histories of people not necessarily receiving the kind of medical care that would have maintained their lives, on the assumption that they didn't have much of a life expectancy or "much of a life," if I may use quotations around that. I'm very fearful that we're headed in the same direction, that we're seeing not a hierarchy of need but a hierarchy of deservedness. Do you think that's possible?
Mr McMullen: I think it's possible. That's why we're just raising the caution flag at this point to look at those ripple effects and those cumulative effects, and also acknowledging that today many people still are receiving good-quality service. We've had that philosophical shift that has said, "Let's own up to what responsibilities we have." That part's been good, but the caution is what's happening down the road.
The Chair: Thank you very much, Mr McMullen and Ms Belliveau, for being here today and sharing your expertise with us.
DEBBIE VERNON
The Chair: We move on to Ms Debbie Vernon. Welcome.
Ms Debbie Vernon: On behalf of Karen and my family, I would like to thank the standing committee for this opportunity to talk about our personal stories. What I'm presenting to you today is Karen's story.
Forty-two years ago, my parents celebrated -- we're one of those older families that kept coming up this afternoon -- the birth of their first child, my sister Karen. When she was a baby, the doctor diagnosed Karen as having cerebral palsy, epilepsy and a developmental disability. The doctor told my parents not to expect my sister to live long, that some day Mom would go and find her dead. He went on to recommend that my parents put her in an institution and get on with their lives.
Fortunately, my parents did not take the doctor's advice. Instead they wanted Karen to be part of their family, to be loved and cared for by them, and our family remained intact. In those days my parents were rare. They made this decision at a time when thousands of other children were abandoned by their parents to languish in large and impersonal institutions, locked away from society.
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Soon after Karen was diagnosed, my parents got together with some other parents and together they pioneered the local association of the mentally retarded, as it was called then. It's known now as community living. They did this to support one another and to make sure children like Karen could live in the community. These children stayed away from two large institutions that loomed nearby.
My parents worked long and hard raising enough money through fund-raising efforts to build a school. Back then Karen was going to school in a church basement. Once the school was built, Karen went there until she was 21 years old. Again, as Karen grew older my parents worked hard to raise money to build what was then called ARC Industries, which was a sheltered workshop. Karen and others would work there, but it didn't last long; Karen was there for about a year and a half. She had nothing constructive to do and she was terribly unhappy, and she quit going.
During this time there began a shift in the decision-making and the control of the parent organization. Suddenly the managers and executive director, who were hired by the parents to run programs for the association, started setting the agenda and direction of the organization. For the first time the power and authority on major decisions were out of the hands of my parents and others along with them. The association was no longer a true parent organization and my parents quit going to the meetings.
My parents managed at home for several years. Mom never pursued her career in nursing; she was needed to stay home to look after us. Then dad passed away. Before he died he asked us to promise never to institutionalize Karen. My younger brother and sister and I moved into our own homes and Karen stayed with mom. Mom is living on a fixed and limited income. We worried about Karen's future now that dad was gone and mom was getting older. We wanted to build new support for Karen for a time when mom might no longer be able to care for her.
This is when we started to learn about special services at home. We were delighted to learn about the program late in 1991. This program of the Ministry of Community and Social Services is very successful. It takes advantage of the knowledge, commitment and competence of families, what they can apply to face challenges related to disabilities. This program empowers people with disabilities through individualized funding, giving them and their families the financial resources to purchase the special supports or services they need.
We applied for funding and Karen began to receive the help of two support workers whom mom and Karen hired to help with her personal care and going out for short walks to improve her mobility. Mom was able to go out one afternoon a week alone for the first time in several years, leaving Karen at home with one of the workers, whose company she enjoyed.
We administered our own contract with funding of $195 per week. At that time, the costs of sheltered workshops in Ontario averaged $256 per week and group homes for adults averaged $546 per week. This is based on the government's estimates briefing book, program and resource summary of 1993-94. Karen's needs are higher than the average and she requires help 24 hours a day.
After three months we had to reapply for more funding to continue Karen's support. This is when the government started turning down our requests for funding. Every time we were denied the funding, we had to appeal. In five and a half years we've had to write 11 appeal letters. That's not including letters to the editor, letters to other families in the province who are going through the same problems we are in terms of finding the funding and letters to our local MPP; that's all additional.
In 1994 the assistant deputy minister, Sue Herbert, told us that there were not enough funds in special services at home to meet our request of $13,000 for the year. She suggested that Karen could go to a life skills program, which is a segregated program where people sit around in an industrial building waiting their turn to go out in the community. When we appealed to the Minister of Community and Social Services, at that time Tony Silipo, he told us there had been difficulties in meeting the growing demand for special services at home and they were reviewing the situation. We're still waiting; that was 1993.
At this time we were astounded to learn that the local association for community living offered a family home program and that the government, MCSS, provided funding to host families who took people with disabilities into their home to live with them as part of their family. We questioned the government why host families, or what is known as the associate family program in other areas, were paid $35 a day, were provided with respite care or relief to that care provider every other weekend, were given $20 per week for travel expenses etc, which amounted to approximately the same amount that Karen's natural family was denied by this same ministry. The ministry did not respond to our question. This was one point we raised in one of our appeal letters.
We felt betrayed. My parents had saved the government millions of dollars by not sending Karen away to live in an institution. They saved additional dollars by working hard with other parents to raise the money to build a school and a place for Karen to work. Parents who left their children in institutions at an average cost of $90,000 per year or in a community group home were never expected to pay one penny towards their support and care. These parents did not face the tedious task of filling out application forms every year or having to write appeal letters for their son's or daughter's support.
Funding for Karen's personal care was cut. In desperation we went to home care for help. This Ministry of Health agency costs $17.06 per hour, of which almost half goes to administration fees. Our special services at home workers were paid $10 an hour with no administration fees. Home care provided two workers to come and assist Karen. Karen received the services of home care for two and a half years. In this time period Karen had 12 different workers come and go.
Last summer we told the home care workers to stay away. They were bossy to Karen and refused to take her out for her walks. Her mobility had deteriorated and this was causing heavier care for mom. Karen was terribly unhappy with the home care workers and she did not want them coming into her home to help.
We had a plan and applied to special services at home for funding so that Karen could go to the therapeutic pool for exercise to make her stronger. To do this she would need the assistance of two workers because of her severe and sudden seizures. Her personal care would be done after she showered after her swim. We asked MCSS for 18 hours a week and we were approved for eight.
Again we had to appeal this decision. Seven months ago Karen's application was sent to the North Bay area office. Our appeal letter of November 16, 1996, sits on the assistant deputy minister's desk. We still wait for a decision about Karen's funding, along with 70 other families. The ADM asked us in a recent letter to forgive her for the recent delay. There has been a backlog with the ADM's office since October 1996. It is totally unacceptable for the government to keep families hanging without knowing if funding will be available for much-needed support at home.
In the spring of 1995 during the pre-election campaign, the Conservatives said that the Harris government would move quickly to expand the individualized funding mechanisms currently in the SSAH program. They recognized that only 3% of the developmental service budget, which is over $900 million, of the MCSS services is allocated to individualized funding; 97% is allocated to institutions and agency programs. Only 3% of that budget goes to special services at home. They said that the current system is largely unresponsive to individual needs and that it is inequitable and inefficient.
The $5 million recently announced for special services at home by Janet Ecker, Minister of Community and Social Services, barely addresses the needs of the 1,000 families who are presently on waiting lists across the province. This amount is not sufficient to eliminate the waiting lists and fulfil this year's requests from approximately 11,000 families who rely on special services at home. We don't feel confident that Karen will benefit from any of this new-found money.
The Conservatives were asked what commitments they would make to respond to consumer demands for fundamental changes to the developmental service system to shift funding which amounts to several hundred million dollars from institutions and agency programs to individual funding. The Conservatives replied that individualized funding was the best model for future funding arrangements, that it promoted individual development and recognized unique capabilities, that individualized funding made good sense and is economical. To date our family doesn't see evidence that the Harris government is delivering what was promised in 1995.
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Our vision for the future: Karen loves her home in the country. Our family lawyer, who is also our local Conservative MPP, helped us establish a discretionary trust fund for Karen. Provisions have been made that she would inherit her home and live there as long as she likes. Karen would live with someone she knows and feels comfortable with, someone who would want to live with her, to be her care provider in exchange for room and board. With individualized funding, Karen would purchase the supports needed much the same way she does now with special services at home.
Karen's family will continue to be a big part of her life. We want Karen to be connected to people in her community, where friendships develop and flourish. Together we will continue to support her with major decisions that will affect her life. We have the love and commitment to do this.
What needs to happen to make our vision a reality is that the Conservative government must live up to its promise to expand the individualized funding mechanism immediately. The SSAH program is grossly underfunded and thousands of families are presently suffering. Battle-worn parents who are older and who have fought for years for the betterment of their disabled children are now simply giving up and are forced to seek a much costlier alternative for their son or daughter.
Change the present system, which the Conservatives admit as being inequitable, inefficient, inadequate, unresponsive and inefficient. For many years MCSS was centralized and organized into policy and operation branches which were headed by two assistant deputy ministers. This was considered by many as being an efficient mode of operation.
However, in the 1980s, MCSS embarked upon a strategy of creating area offices, smaller "fiefdoms" which were supposed to be responsive to local needs. They have not been responsive to Karen and her family. The local office added a layer of bureaucracy between us and those who make policy decisions concerning her funding.
We have to reapply every year for dwindling support dollars and complete intrusive forms the ministry devised in an attempt to judge families with the most severe circumstances. We all need support when it is asked for. Stop wasting our time. Filling out forms takes a lot of time, stress and worry.
This year MCSS came out with forms as an add-on to the application form for special services at home. It asks questions about the stress levels of families, whether they are single, married, divorced, separated or other. It asks about their ability to cope. It asks for the severity of the disability. These are all really negative comments we're faced with having to fill out and that's wearing us down. We need support and something bright to look forward to, not intrusive forms every time we apply for funding.
Why not establish an individualized direct funding mechanism and include it as part of Karen's monthly income from her family benefits allowance? One can look to Alberta as an example of how the Conservative government has successfully implemented this type of system. It has been in place since 1987. We've heard a lot about the shortfalls of that system, but I think it might be a good base to work from. It's something we shouldn't disregard completely. I think we should pick the good points from what's happening in Alberta. It was a Conservative initiative. I think maybe the Conservatives could get some helpful pointers from that direction.
Offer tax breaks or tax deferrals to people who are disabled and own their own homes, as is now being considered for seniors in this province. Do not create policies like the home equity policy that the NDP was about to implement in 1993, which would penalize people for owning their own homes.
We don't want the SSAH program or any individual direct funding shifted over to the Ministry of Health. We don't want Karen to be part of a health care system where the emphasis is on viewing a person's needs by their diagnosis or deficits. We have experienced this situation through home care. Programs must stay with MCSS regardless of its present shortcomings.
The time for change is now. You are familiar with Karen's story. The struggle we face with the government in order to obtain adequate funding for her support is disgraceful. We are not alone with our struggle. Thousands of other families share our reality. Time is running out. Mom is getting older and we are weary of dealing with faceless bureaucrats who only seem interested in protecting their jobs. We hold the standing committee accountable and responsible to take action to help us. Take courage to make the important and necessary changes. Karen and thousands of other people with disabilities are counting on you.
We have applied again this year for special services at home funding. On January 22 this year we received a letter from the North Bay area office stating: "Funding is limited and only individuals and families with high-priority needs will get funding. Those with lesser needs will be placed on a waiting list."
If Karen's special services at home funding is denied, Karen will no longer be able to go for her swim and exercise at the pool and meet new friends. She would be forced to accept home care which cannot respond to her needs. If the government fails to change the system, Karen's future looks bleak. Our vision of Karen living in her own home surrounded by friends and family will not be realized. Instead her life will be controlled by residential staff, day program staff, group home managers, program supervisors, executive directors, unions and board members. Decisions that affect her life would be made by local planning groups far removed from Karen and her family.
My family and I must keep our promise not to institutionalize my sister. Make the changes now so that Karen and many other people with disabilities have a brighter future to look forward to. Thank you.
Mrs McLeod: I'm not sure that there are many questions. I think you've told the story clearly and you've really left it back with us to say, "What can we do to get the kind of support you need that makes so much sense to provide?"
If I were to ask you a question, it would be to maybe come back to your sense of a plan for the future of your sister. She would need some paid support, I would imagine, as opposed to just somebody who would live in the house and provide care in return for room and board. I'm wondering what estimate you might make of the dollars that would be required to provide support so she could continue to live in the family home.
Ms Vernon: This is our present plan, and as you know, plans change, things develop: As it sits right now, we thought that Karen and our family would be able to find someone to come and live with her to provide the supports in exchange for room and board. It hasn't entered discussion, about paying that person more. We have talked about her family benefits allowance and we have talked about individualized funding so that this care provider would not be her care provider for 24 hours a day, like mom is now.
Right now Karen goes out three mornings a week. We have a vision, and Karen has said she would like to be able to go out more often too, where she would do different things, other than swimming at the pool. We could see paid support for that coming from the government and the other support would be supported by Karen and the trust fund that we've established.
Mrs McLeod: Could you tell me why you say so categorically that you don't want the SSAH program or any individual direct funding program shifted over to the Ministry of Health?
Ms Vernon: We see that the Ministry of Health's mandate, as it sits right now, is to look at a medical model in supporting people, and although Karen has some medical needs, we feel they are adequately addressed through her physician and her medications that she takes now to control her epilepsy. The types of support we're looking for are more in a social context. We don't want the focus on her medical condition or home care. They call it "deficit," not being able to do certain things. We want a ministry that recognizes people's abilities rather than their weaknesses.
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Mrs McLeod: So you think the frustrations with the Ministry of Health would be even greater than you've had with the Ministry of Community and Social Services.
Ms Vernon: It would be a major headache, because not only would we be talking about a funding issue, but we would also be talking about a philosophical issue. I think that's a much harder battle to win, especially if the system is full of medical professionals who know best.
Mrs Boyd: I agree with you and I think most advocates of the disabled agree with your positioning on this. In fact, I think we lost a huge battle when long-term care went over strictly to health instead of the joint kind of work that it was with community and social services and health care. Because you're right: Once you apply only medical model criteria to something, you're really looking at a very different level of support.
The other thing that's important to recognize is that you and your family really represent a point of view that is very different from the point of view of a lot of parents and, supposedly, their children in the system. You'll know that many families have fought very hard to maintain their children in institutions and have fought very hard to maintain the funding for the supported workshops, even though I think your experience with the workshop and Karen's experience with the workshop -- it lasts only so long for most people and then it feels like a dead end for a lot of people, yet when you try and take money out of the institution, you try and take money out of the workshops to put into this more forward-thinking program, there certainly are a bunch of other people who really fight that very hard. You must have faced that in your own community. Your parents must have faced it with the association for community living.
Ms Vernon: I come with an interesting perspective, because not only do I have a sister who is developmentally handicapped, but I have worked in the profession for about 20 years and I have worked for service agencies that provided residential and vocational services to adults with disabilities. I've worked with supporting families who are not part of a system around getting special services at home and adequate funding and I presently work in an institution, where I see a lot of waste.
Incidentally, just this last week, supervisors there received a raise, and this is in a place that is scheduled to close. There are 27 supervisors in this one place. It's between $3,000 and $4,000 a year raise and I added it up and it's $168,000 of money that families could dearly benefit from.
Aside from that, I think if we had success with our plan, it might be a model for other parents to look towards and to find hope that there is another method of support. Forty years ago, most parents looked to the institution as the model of support. That wasn't in our family's vision. Our family's vision was to build something different. When that came, it didn't quite fit Karen's situation, so we just kept going. We kept the vision going and tried to find something that did fit. That's why we were so happy to find special services at home, because it was individualized and Karen and mom could direct the type of support where it's needed, when it's needed, and it works well. I think that type of mechanism could work well for people if it was made available.
Mrs Boyd: Frankly, it was the kind of advocacy you've done around the trust provisions for the house that kept us from implementing what was presented by the ministry as a really great way to cut people off.
Ms Vernon: You see, as families learn from one another, there's no greater source of information than from other families. We are part of a larger network of families. We share our successes and we share things that look possible and bright and things that might work for each other of us. If it's something that can work for our family, I think other families can learn from that and develop a plan, especially the older parents who are wondering what to do.
Mr Tom Froese (St Catharines-Brock): Thank you very much for coming and thank you for the story. It's well documented and it speaks directly to the issue.
In my riding I've been dealing with a lot of proposals on this line about individual funding. I don't know if I'm won over to the whole thing, but I certainly appreciate the concerns. There needs to be a move from our government, in my opinion, to have individualized funding available. When we look at that, though, it's got to come from somewhere, possibly not new dollars but taking it from the existing system.
Then there are problems on the other side. Individuals such as yourself or families who have been involved with the association for community living have been dissatisfied with their association because they're not getting a voice on doing different programs for individual children. What happens is that they're not satisfied with what's happening, obviously.
I want to talk a little bit about the mechanics, though, if we do something like this and we change our focus, taking away from programs and into individualized funding. Could you tell us a little bit about your experience? Who set up the plan for Karen? How did it work? Your mother's getting older. How do we address that situation? Your mother's probably the driving force or the control behind this. When your mother's no longer able to do that, can you give us some examples how you see that being realized for Karen to continue on?
Also, in your opinion, how do we address the problem where those families -- maybe they're not like you, maybe they're not like your mother -- aren't able to make that decision for the individual who's on disability or on an individualized program? Could you give us some suggestions?
Ms Vernon: That's a well-packed question. First, to address where the money is going to come from, I think I hit on it a little bit in the brief when we talked about the area offices. I don't think we need to focus just on institutions. We all know that institutions are closing. We all know that making that shift is going to save millions of dollars.
I think we also have to look to the area office to see how efficiently that process is working for individuals or not working for individuals. I believe there are 13 area offices around the province and each one has a program manager and a different number of special agreements officers. The list goes on with the number of people who are employed in each area office. Maybe we should look at how things were run before the 1980s when a lot of people felt that was an efficient way of running things.
Looking at agencies and certainly looking at institutions, I think there could be a lot of money realized there if institutions close on schedule, if there aren't any delays or problems. When we look to agencies and programs there, I think we need to look at administration fees. We know that some agencies run special services at home programs through their agencies. We've said they shouldn't charge any administrative fees. We know that some are 10%, 12%.
We know that the Chedoke hospital in Hamilton, which refused to give over the program to families -- it's really hard for families to self-administer the program in the Hamilton area. We know the administrative fees there are 28% and that's money that's taken away from families. There are over 1,000 families right now on waiting lists. That might be another way of addressing their funding dilemmas.
How we got discussion going around planning for Karen's future, that hasn't been easy. It's been very difficult for my mom to look at her mortality. It's not a comfortable subject to talk about the demise of a major caregiver, but we've passed that hurdle. It has developed in the last six or seven years; it didn't evolve quickly. A lot of the planning happened around the dining room table and if we weren't sure of something -- especially when we were looking at setting up a discretionary trust fund, we weren't sure how that worked so we called in a person from a life insurance company who's very well versed in all of this and we called in our family lawyer, who also came to our dining room table and helped us with that.
So 99.9% of the discussion happens in Karen's home around the dining room table and if we need advice or suggestions, we're resourceful, we're creative, we call in people. We've called upon our local association. We didn't know initially what to pay our workers for Karen's support so we went to our local association and learned that they pay anywhere between $11 and $16 an hour. We thought $10 sounded reasonable; we didn't go the going rate. But now the North Bay area office is telling us that we can only pay our workers $8.30 an hour and these same workers have been with Karen for years. To say to them, "The government is telling us to pay you less for the same level of support," we can't do that. That's part of our appeal.
We know that institutional workers, support workers who work with disabled people in institutions, make over $18 an hour with benefits, with mileage, plus, plus. We know that agency staff make anywhere between $11 and $16 an hour. So it's how much you want to know and how resourceful you can be. But we've also found that Family Alliance Ontario, which is a network of families across the province who come with a wealth of information from different backgrounds, we've learned a lot through them. That has been a major part of our support too, especially around appealing with our appeal letters.
It's informal -- I mean, there's no technical, mechanical way of doing it. It evolves, it changes, it melds to the person. There's a lot of natural things that happen in all of that. So it's tailored to each person and each family and circumstances.
The Chair: Ms Vernon, I want to thank you on behalf of the committee for your eloquence and the moving way in which you've told us the story of your family. We commend you and your family for the courage you display every day.
Ladies and gentlemen, this brings our hearings to a close. The next committee meeting is February 3 at 3:30 pm.
The committee adjourned at 1754.