FUNDING FOR PERSONS WITH DISABILITIES
ONTARIO ASSOCIATION FOR COMMUNITY LIVING
CONTENTS
Monday 20 January 1997
Funding for persons with disabilities
People First of Ontario
Ms Pauline Lynch
Mr Peter Parks
Ms Veronica Manuel
Ontario Association for Community Living
Mr Bill Nicholls
Mr Jim Turner
Mr Gordon Kyle
Ms Agnes Samler
Jim and Marilyn Dolmage
STANDING COMMITTEE ON SOCIAL DEVELOPMENT
Chair / Président: Mr Richard Patten (Ottawa Centre / -Centre L)
Vice-Chair / Vice-Président: Mr John Gerretsen (Kingston and The Islands / Kingston et Les Îles L)
*Mr JackCarroll (Chatham-Kent PC)
*Mr David S. Cooke (Windsor-Riverside ND)
*Mr TomFroese (St Catharines-Brock PC)
Mr JohnGerretsen (Kingston and The Islands / Kingston et Les Îles L)
*Mr MichaelGravelle (Port Arthur L)
*Mrs HelenJohns (Huron PC)
Mr W. LeoJordan (Lanark-Renfrew PC)
*Mr GerardKennedy (York South / -Sud L)
*Ms FrancesLankin (Beaches-Woodbine ND)
*Mrs JuliaMunro (Durham-York PC)
*Mr RichardPatten (Ottawa Centre / -Centre L)
*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 LynMcLeod (Fort William L) for Mr Gerretsen
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 1530 in room 151.
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 Acting Chair (Mr Michael Gravelle): Good afternoon, ladies and gentlemen, and welcome to the standing committee on social development. Today we're beginning standing order 125, 12 hours of hearings to deliberate the impact of the Conservative government's funding and funding cuts on persons with disabilities and their families.
PEOPLE FIRST OF ONTARIO
The Acting Chair: We have about two and a half hours this afternoon and we have our first group, People First of Ontario, sitting before us. Welcome. Thank you very much for coming down from Sudbury; we appreciate it. You will have 30 minutes to make your presentation. Whatever time is left over after your oral presentation will be divided equally between the three parties. If you would begin and introduce yourselves to the committee, we will get started.
Ms Pauline Lynch: Hi, I'm Pauline Lynch. I'm president of People First of Ontario. I'll give a brief history of our organization. Our organization was started in 1981 and it was designed for developmentally handicapped persons who have lived in institutions and then come out of institutions, who have worked in segregated work areas, lived in group homes. They felt they weren't being listened to and didn't have a voice. So People First has some goals we've developed to promote full equality for persons, to assist other people in learning to speak for themselves, to teach others in the community about the rights and strengths of People First members.
We do not run services. We are not professionals. We are people who have been labelled -- People First was started by people who were labelled mentally handicapped.
Mr Peter Parks: People with disabilities are people first. That means everybody is a citizen of Ontario.
The Acting Chair: Excuse me, you're Mr Parks, the past president?
Mr Parks: Yes, I'm Peter Parks, past president. Maybe this is the thing I should have thrown in here. I'm also cofounder of People First of Ontario, so I've been around a few years.
Therefore, if they're citizens, they should enjoy the rights just as everybody else, such as in our education or in our health care, for employment or income support or transportation or marriage. I know, because I'm a labelled person. I had to ask to get married, had to ask somebody else, not my spouse. I had to go and ask a cotton-picking lawyer if it was okay to get married because of some age-old law that says a handicapped person shouldn't get married. It's been repealed since, but that was then.
Also, we're guaranteed by the Charter of Rights and Freedoms to "equal benefit of the law without discrimination based on mental or physical disability." While most of the people we represent require special assistance in coming to something like this or other just plain meetings and maybe talking to other people, need time to be understood, they're ordinary citizens. We want to be included in the public, not excluded by being forced into segregated settings, as Pauline mentioned, group homes, institutions or different special education where you're taught to put, as I call it, a round peg in a square hole for 18 years or more.
The typical life experience of many people who have been labelled is that they're segregated and excluded from our so-called communities. We ought to feel badly because they are citizens. People -- society -- think we can't make a decision that's good. I know I don't make decisions in isolation. I talk to other people and find out what would happen "if." People think that we can -- I say we don't make them in isolation. We talk about others, but they're trying to force us to make them in isolation.
We oftentimes do not have a choice of what we wear. I happen to be lucky enough to choose to wear these clothes, but oftentimes people haven't got these clothes to wear. They don't even have a white shirt or a tie, things we all take for granted.
People don't listen to us. As a labelled person, your opinion doesn't matter. Go ahead and do it, the other people that is, go ahead and do it anyhow.
The president of the organization I work for stated to the Federal Task Force on Disability Issues: "We are citizens, but most of society does not see or value our citizenship. We are still seen as children who never grow up."
I didn't plan on reading all this, just summarizing. We are worried about these cuts. We are uncertain what we might face. It's been bad enough without these cuts. I used to be proud to say I was an Ontarian. Now I don't know. I don't know what's happening to the Ontario I knew. I know it's eroding.
I'd like to turn it over to Pauline because at the board meeting she had this past weekend there were some issues brought up about the cuts and how they were affecting people, members of society, citizens, members of our movement. These are the everyday life experiences.
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Ms Lynch: What do the cuts mean to our members? Some of the issues we talked about were that family benefits have been reduced and rent-geared-to-income housing units have been reduced. There are cuts to organizations and groups that help many of our members who live in the community receive support, cuts to literacy programs.
Example: In one community, there were two teachers to 28 adults. Now there is one teacher to 28 adults. How can people get the help they need? Transportation: reclassifying who can use the handy transit. It sort of limits how people with any type of disability can get around if they can't use the handy transit. The $2 dispensing fee for drugs has been an issue for our members, because some people take a lot of drugs and the extra $32 they might have to pay per prescription could be very costly for our members.
Having the Employment Equity Act taken away: Many of our members have had jobs and employment equity has helped them to get jobs, and now there's nothing there. They're staying home or going back to work in sheltered workshops.
Our members want to be socially and economically integrated into our communities. However, the majority of people who have been labelled have very little education. When they are looking for work, if they have to fill out an application form and they do not understand it or they cannot read, who will help them?
In local associations for community living there's a supported employment program. The job coaches have been -- in one example, there's been one place where three job coaches have been laid off because of funding cuts. That leaves one job coach to run the whole program. There may be 50 people in the program and one job coach left to look after them. Some people end up going back to work in their sheltered workshops.
Our concern is also that the people who have been sort of falling between the cracks are going to fall deeper into the cracks because of lack of funding to support them in whatever way they need.
Mr Parks: We are very concerned the government will attempt to cut the costs of disability service by defining "disability" in a very narrow fashion. I know I need support. Likely, if they define "disability" in such a narrow way, I won't be able to get this accommodation, as it's known. Every person or every citizen with a disability has a particular need, but if disability is defined in a way that excludes those people who can do some things for themselves, but not other things, the government will leave a heck of a lot of people with disabilities at a serious disadvantage.
It has been recognized for years that the institutional model for serving people labelled "mentally handicapped" is a terrible way for people to live their lives. Still, the government spends $300 million on institutions which house fewer than 3,000 persons, so the average cost is $115,000 a person. Approximately another 5,000 live in group homes, which we think of as mini-institutions, at a cost of $200 million, average cost $40,000 a person. Programs like special services at home and the recent announcement just scratch the surface of the actual needs of people who wish to live like all other Ontarians, in other words, with families or in homes of their choice, not of somebody else's. I wouldn't want somebody saying I have to live in that building.
The vast majority of the citizens of this province who have a serious enough intellectual disability that they cannot live independently, about 65,000, receive no publicly funded services of any kind, except for some kind of income support under the Family Benefits Act. We know there are very different levels of expenditures that do not correspond to the actual needs of people. For every individual in an institution, you could find another with the same needs in a group home and another living with his or her family with hardly any cost to the government. It is time to move to individualized funding and away from the institutional model.
What is it going to take to make a level playing field for all Ontarians, regardless of their ability? These cuts are chipping away at the things that we need to level the playing field for us. People who are labelled as having mental handicaps are not seen as full citizens. In fact, we aren't even seen as second-class citizens. When you are seen as a person first, then when it comes time to make choices about who will receive the help -- we aren't going to get it; that we know. People who are labelled "mentally handicapped" historically have not made -- somebody put "the top of the list" when they typed this up, but I say "the bottom of the list." This is a struggle we have been faced with just to live the rest of our lives like citizens of Ontario who have not been labelled.
Since we're citizens of Ontario, why aren't Ontarians with disabilities treated fairly, regardless of where they live in the province or which municipality they live in? This is important if all social services and supports are to be the responsibility of the municipal governments across the province, which we think would hurt people. Standards for providing such services must be set by the Ontario Legislature so that the local governments cannot balance their budgets at the expense of people whose ordinary needs cannot be met in the traditional way.
We need leadership in the form of supports to our communities to accept people, not see them as burdens; we need leadership in legislation to protect those members who are vulnerable and we need support to be able to speak for ourselves.
Ms Lynch: We'd like to end our presentation and open the floor to questions now.
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Mr Jack Carroll (Chatham-Kent): Thank you, Mr Parks and Ms Lynch. We appreciate your being here today. Your organization is a member of the minister's advisory council. Is that correct?
Ms Lynch: Yes, I sit on that committee.
Mr Carroll: How long ago did that committee start to function?
Ms Lynch: It was about a year and a half ago when David Tsubouchi was minister.
Mr Carroll: So it's something that Mr Tsubouchi started?
Ms Lynch: Yes.
Mr Carroll: Have you found that beneficial?
Ms Lynch: Yes. It was beneficial in the fact that just to be on the committee with the rest of the committee being service providers and me being a self-advocate, it meant a lot because a lot of the things we said were agreed upon by service providers.
Mr Carroll: So you get a sense from being on that committee that in fact we are interested in improving the services that are being offered to people with disabilities? Do you get that sense from being on that committee? Are we interested at least in hearing what you have to say?
Ms Lynch: Yes.
Mr Carroll: You talk about several issues that are potential areas of problems and I understand that. I'd like to assure you that, from a standpoint of our commitment to service levels being legislated at the provincial level, the standards would be set provincially. Regardless of how the funding model changes, we are committed to the standards being set by the province because we believe very strongly in that.
The whole exercise that we're going through is to make sure that there are more dollars. We have a limited amount of money available. The taxpayers of Ontario have a limited amount of money to spend on any program, regardless of what it is. There are people in our community who very much need our support and will continue to need our support. Unfortunately, over the years we've developed a series of systems that have become too expensive. We're spending too much money on the system and there isn't enough money left over to adequately help the people we are trying to serve.
What we're trying to do now is to change it around so that within that amount of money we have to spend we can have a higher percentage of that available to spend on people who need the funding rather than spend it on the bureaucracy and the organization. Does it make sense that we would take that kind of an approach? Mr Parks, do you see any --
Mr Parks: No, it doesn't make sense to me, because there's a quality-of-life issue here. Everybody has a different need, and to me that way is measuring it as if everybody has one need only. I am sorry, but everybody has got different needs. Right up front, I've got different needs than you have.
Mr Carroll: So you advocate funding the needs of the person rather than an organization?
Mr Parks: That's right.
Mr Carroll: I don't disagree with that. I think that's a good point. But do you think there's some change required to get to that kind of a model?
Mr Parks: Right now, the way I see it, they're taking the money away. The government is taking the money away and they aren't funding the needs of the person. They're just saying, "Well, if Joe Blow only needs such-and-such to survive, that's what Mary Ann needs to survive." In reality, it's not that way.
Mrs Lyn McLeod (Fort William): I want to thank you as well for making a presentation to the committee today. You are truly a remarkable organization. Nobody can be better advocates for the needs of people than those who are dealing with the day-to-day reality of it, so thank you for coming.
I know all of us value your opinions. It concerns me that one of the things you say in your brief is that you're in danger of not being able to continue to advocate because of the lack of funding for the organization, and I hope the government members will take note of that. Unless we can hear from you on a regular basis, simply asking you to sit on a committee won't be meaningful because you won't exist as an organization, and making sure you continue to exist is critical.
When we had proposed having committee hearings into the effect of the government cuts on the disabled it was of course before last week and some of the changes. I think our concerns perhaps now are even greater than they were a week ago. Considering that there were not supposed to have been any cuts made to the disabled, you've already outlined a number of areas in which members of your organization have been experiencing problems.
I know, with three minutes left, we don't have time to highlight them all, but one that really stood out for me was the fact that already rent-geared-to-income units have been reduced so that members of your organization are finding they have difficulty getting housing. I guess one of the questions I would have -- and we have so little time -- is, what happens as 100% of the costs for social housing has been transferred to the municipalities? If the units are already being reduced, if housing is already a problem, is that going to be an even greater problem?
I guess I have the same concern about transportation. You are already seeing cuts to transportation support. Now that the municipalities have to cope with all of this as a new service, who is going to be out there to help ensure that the disabled in our communities actually get the support they need? We have little time, but you might want to comment on whether those are a couple of the areas in which you see some real problems ahead.
Ms Lynch: I do. Most of our members are still in group homes and moving from a group home to the community is really hard to do when you're on a fixed income. As it is, it's hard enough to just make ends meet. The housing issue could be detrimental because they may eventually move out into the community and maybe end up being on the street one day because they can't afford to pay the rent because the rent increase is going up all the time.
People won't be able to keep jobs because they won't be able to get to and from work, or they just won't be able to function as well going into the community to shop or to do daily doctors' appointments. It won't be as accommodating.
Mrs McLeod: I appreciate that.
Ms Frances Lankin (Beaches-Woodbine): We also want to thank you for being here today. I want to follow up actually on Mr Carroll's questions to you. I thought it was kind of like -- you know in courtrooms how they say that sometimes attorneys ask leading questions? I thought it was kind of leading to say: "But aren't you on a committee?" and "Where did the committee start?" and "Doesn't that mean you're being listened to?"
I want to put to you a counterproposition. It seems to me that there are lots of forums for councils and committees that members from your community have been on over the years with all governments. This government actually cancelled the advisory council on disability issues and then created another structure, right? Isn't the true test of whether you feel you're being listened to whether you're heard, whether your recommendations are actually acted on? Do you feel that you're being heard by this government?
Ms Lynch: Not yet. I haven't really seen anything that this government has done for anything as being positive. The announcement last week I found very hard to follow. There was no structure to it. It's just: "We're shifting this to the municipalities. That's it."
Ms Lankin: We're all having that trouble.
Ms Lynch: But I'm just saying, it's things like that. They said they haven't really looked at disabled issues yet, so I'm afraid that same sort of thing is going to happen to the disabled.
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Ms Lankin: In fact, the government made a commitment that they wouldn't cut services to the disabled at all, yet I see certain things in the budget like -- there was an access fund to renovate public buildings. It had been $3 million under the previous government's budget and they cut that altogether and then they reannounced it as a brand-new initiative of $1.5 million. Isn't that, in effect, a cut to your services?
Ms Lynch: Yes.
Ms Lankin: Another example is the special services at home program, which was cut by something like 25% and then reannounced by Ms Ecker this past week as five million new dollars. When you actually compare it, isn't that a cut?
Ms Lynch: Exactly.
Ms Lankin: At this point, do you believe the government hasn't cut services?
Ms Lynch: I think they have. They're hidden cuts, where you have to really look at it. They may not really show it as a cut, but the wording may be, like you said, a cut type of thing.
The Chair (Mr Richard Patten): I'm going to have to say thank you. The time has gone over. I'd like to thank you, Ms Lynch and Mr Parks, for your presentation today and for taking the time to prepare your brief and be with us.
VERONICA MANUEL
The Chair: Is Veronica Manuel present? You have half an hour for your presentation and/or questions. Whatever time remains from your presentation we divide between the three parties for comments or questions with you. Welcome, and thank you very much for being here with us.
Ms Veronica Manuel: Thank you for having me. I wrote out my presentation because I was aware there was a time limit, and I didn't want to go over and not leave time for questions.
My name is Veronica Manuel, and I am the parent of a severely disabled five-year-old child. Dylan has cerebral palsy, is blind and has a severe seizure disorder. He also has a disorder called silent aspiration and therefore cannot eat orally. His only source of nutrition is given to him eight times daily through a gastrostomy tube inserted into his stomach. This alone takes seven to eight hours of the day. On top of that, Dylan needs Ventolin and Intal inhalations a minimum of two to four times a day, chest physio twice a day and occasional suctioning for pharyngeal pooling.
Dylan is virtually dependent for all aspects of daily living. He is unable to walk, talk, sit, roll over or hold up his own head without support. He has trouble moving his bowels and requires Fleet enemas every second day. His daily medications, and this does not include any medications which are needed for acute illness, include Vigabitran, Mogadon, Cisapride, Clobazam, Phenobarb, Ranitidine, Carnitine, Ventolin and Intal. These are administered four times a day through his g-tube.
Dylan is described by professionals in terms such as "severe developmental delay," "totally dependent," "permanently brain damaged" and "medically fragile." His life expectancy has been estimated at between six and 14 years of age, but I am told this depends greatly on his quality of care and the prevention of further complications. I am told he functions at a three-to-four-month-old level and there is little hope for any further progress. Despite all of this, keeping Dylan at home with his family is something I am totally committed to but also something that keeps me somewhat dependent on the system.
In 1993, a Wesway host family was found. They took Dylan for one afternoon, and they never had him back again. In 1994, after three years of basically caring for Dylan on my own and nearly collapsing with exhaustion, Dylan was put on a complex care program, which provides support services for 71 hours of the week. The remaining 96 hours of the week I am solely responsible for, plus many times I must cover shifts for workers who cannot make it to work or who arrive late. The cuts and policies implemented by the Conservative government have negatively impacted me and my family in many ways. Simply to avoid repetitive writing, I would like to read you a letter I previously wrote to Premier Mike Harris.
"Dear Mr Harris,
"The Conservative government's goal of misleading the public into believing that welfare recipients need a taste of hardship to become motivated is evident in your mandate of cutting benefits, introducing fraud lines and creating and enforcing irrational eligibility criteria. Your next claim to fame is to implement workfare and with the help of the Royal Bank to start fingerprinting recipients as though we were criminals.
"It is demeaning to me and my son, being truly in need of emotional, physical, and financial support to, by failed recognition, be forced into extreme poverty and hardship under a system whose policies and criteria are supposedly created for people who are unable or, as the Conservatives imply, unwilling to work. Besides meeting Dylan's medical needs, I must coordinate service providers and make schedules. I must order all his medications, feeding tubes, bags, decompression tubes, suction tubes, Ventolin masks, liquid nutrition and enemas. To prevent contractures and skin ulcers I must get up twice a night to reposition and turn him. When his breathing is really laboured, I must stay up with him all night to monitor him and give Ventolin treatments or suction him. I must make and accompany him to numerous appointments with specialists such as pediatricians, neurologists, speech therapists, dieticians, orthopaedic surgeons, physiotherapists, occupational therapists and equipment specialists. I also work on a casual basis, care for myself and two other children (one of whom is Dylan's twin) and maintain the home. Do I appear jobless? Do I fit your portrayal of a welfare recipient?
"These cuts, new policies and inaccurate portrayals have hurt my family and me financially, emotionally, physically and socially. I feel as though I am being killed for ensuring my son survives. With the pending closure of more institutions and a lack of forward planning, my story shall become common.
"How can you recognize my need of handicapped children's benefits, which is based on income, and then implement a 21% cut to my family benefits? You are robbing Peter to pay Paul. The reduction to benefits has made it virtually impossible for me to make ends meet and I have literally resorted to drinking Dylan's liquid nutrition some days to avoid running out of groceries. Sadly, I consider myself lucky to have this option as otherwise I would line up at food banks. In the midst of these cuts your government is closing local offices whose job is to track down delinquent parents and enforce support. Go figure! Hopefully the savings from these cuts will accommodate the wealth of caregivers who will now not collect any child support.
"One of your government's new eligibility criteria is such that as long as I have to be part of the welfare system, I may not co-reside with another person or am at risk for termination. Pardon me, I should rephrase `another person' to `a male person.' This criteria would not have applied if I were living with another female in a gay relationship!
"Incredibly, my fate was put in the hands of a single person who assessed a spousal form and determined that my co-resident and I were `spouses' (justifiably, even a criminal gets the benefit of a jury)."
I would like to say I brought that spousal form with me, the original one I filled out. There was not one question on here that asked, "Are there any circumstances which warrant another person in your home?" It asked, "How do you introduce your co-resident?" To this, I said, "By his name." It asked if we had any joint bank accounts, joint credit cards, any of that. We had none of that. I still to this day do not know what this was based on. It asked, "Did he spend time with your children? Did he help out with them?" Yes, he did. But the mentality of that is, if I had a different man in and out of my house every night who had nothing to do with my kids, the system would say: "That's okay, that's fine. Because you have somebody who is helping with the kids and doing stuff, we're not going to help you."
"Mr Harris, this is a great example of the lengths your government will go to even at the expense of my son, to imply to the public that you are looking out for their better interest. At first glance it would appear to people that you are taking a stand in the `subsidizing of bordellos,' a quotation of the famous Evelyn Dodds. In reality, this enforced policy not only created hardship for my family but cost the taxpayer even more. My benefits, which decreased when he moved in, increased when he moved out! My previously subsidized rent, which was no longer subsidized when he moved in, is now being subsidized again! Where is the saving? Where is the rationale? The fact that this man's inability to support us financially was compensated for in many other ways was totally overlooked."
I'd like to say there that he did for free what no other person in Dylan's life did unless they were paid professionals. He learned to tube-feed Dylan. He took care of the kids in the night if Dylan had to go to the hospital. Dylan has been admitted to hospital 40 times in five years, and 80% of those admissions have been in the night-time hours. He was the one free support in my life, in Dylan's life, and he was booted out.
"The irony here is that I, the parent, who stays to care for my son, am forced to remain on my own while the other parent leaves, marries, pays minimal support and carries on with his life. Why does the system not track down the absent parent, deny them a partner, accuse them of robbing the system, fingerprint them and insist, if they have a `spouse,' that the spouse also provide financial support to their children, just as your policies suggest that my co-resident should? The answer to this is simple. The system is backwards, as the advantage is given to the parent who deserts their child."
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I went to legal aid to apply to get a lawyer to take Dylan's father to court for child support. I told them about Dylan and everything. I got the application back on November 1, 1996, saying, "You've been denied this as this is not a priority case." I brought that with me too if you'd like to see it.
"As a birth mother and caregiver, I ask you, would it be conceivable for a foster mother, while caring for her foster child, to be terminated from the system or accused of fraud, simply for establishing a relationship? Positively not, because although we do the same job she is in a system that recognizes her.
"I am enclosing a document which clearly shows that as a foster mother, not only is she recognized, but adequately (for lack of a better word) compensated. In comparison, this document also shows how much I must struggle to get by on. Why, not only the great disadvantage to my children but the insult to my efforts? Is this incentive to keep my family together? So you cannot mistakenly assume or imply that my figures are inaccurate or exaggerated, I have had it witnessed by Rob Richardson, executive director of CAS, Thunder Bay, and Teena Finley, City of Thunder Bay Social Services."
If you look on the next page, it shows what I get from family benefits, $420.47 per month, and child support of $550 a month, for a total income of $970.47. I get handicapped children's benefits -- I didn't put that on there because that goes towards stuff for Dylan -- and that's the maximum you can receive. My expenses for Dylan are way in excess of $500 a month. A foster mother with three children, one of whom is handicapped as Dylan is, would receive $4,026.50 per month. Above and beyond that, they would pay every medical expense of Dylan's: drugs, tubing, diapers, whatever. They would provide respite to the family. Just a thought.
"I, by doing my job of caring for Dylan at home, am enabling you to do your job of closing institutions. Instead of reinvesting the money saved to assist me in my effort, you impose hardship, isolation and poverty on me. Then, when despite being on welfare, I have actually saved the taxpayer hundreds of thousands of dollars, you portray me as a criminal, thief, abuser of the system and a person in need of hardship. I have been living hardship!
"The new fraud lines are set up so that any person may call and allege a recipient is committing fraud. I ask you, why a fraud line exclusively for welfare recipients? Why not also combat UI fraud, compensation fraud, tax fraud etc? I guess the safe assumption is that a person more likely to steal is a starving person, and who better than a `welfare thief' to add credibility to the predisposed notion that recipients are responsible for the demise of the economy.
"Giving your government a previous benefit of a doubt and believing a quote that `children are a priority of our government' (Thunder Bay Post, June 4, 1996, issue), I have twice written to Mr David Tsubouchi" -- this was before the cabinet shuffle; I have since written to Ms Janet Ecker -- "informing him of my circumstances, efforts and the hardship created by your government's attitudes and policies. His response to me was a brief acknowledgment of having received my one letter. My second letter has yet to be acknowledged. His neglect in dealing with these issues brings truth to Albert Einstein's statement that `The problems of the present day cannot be solved at the level of thinking that created them.' Mr. Tsubouchi cannot now allege that the consequences of these policies eluded him but rather that he chooses to ignore them.
"He showed no desire to acknowledge or deal with the fact that the hardship these policies are creating causes frightening uncertainty about Dylan's future. If the hardship forces me to work full-time outside my home, it shall also force Dylan out of his home. Even in two-parent families, one is usually forced to abandon a paying profession for the uncompensated one of caregiving. This greatly decreases the family's income at a time when expenses become extraordinary. In one-parent families such as mine, Mr Tsubouchi claims his intentions are to give me a `hand up,' when in fact he is giving Dylan a `hand out,' -- right out of his home.
"He showed no desire to acknowledge or deal with the fact that while baby-boomers are aging and modern medicine is keeping more and more children like Dylan alive, institutions are closing! Does he not realize that as more and more of the population become family caregivers, the lack of forward planning can only facilitate crisis? Modern medicine, considered a saving grace for many, becomes irrelevant without a commitment and the proper resources to support people and their families in the prolonged period. The scenario is the same as rescuing a young deer from a trap only to throw it in a pen with wolves. Is not the caregiver...who is now expected to rescue, protect and care for the deer, also at risk? A highly exaggerated comparison, you may think. Not by my experiences! I have been to doctors for fatigue, stress and burnout. Their only solution, because their hands are also tied, is to offer me medication which supposedly will temporarily help me to cope. I do not need medication! I need financial, emotional, physical and social support."
I would just like to comment on the mentality of that kind of solution. We as a society say: "Sorry, we can't help you. There's just no money. We can't do this, we can't do that. All we can do is offer you drugs." Prozac, I think, is the drug of choice these days, if I'm not mistaken. Then we plaster "Say No to Drugs" posters all over and expect our young people to take us seriously.
"The truth is, as Dylan's mother and primary caregiver, I am struggling. Daily, I fear for his future life, only to be confronted by an even greater fear of the alternative, his future death. Over the past five years, I have exhausted my financial resources, I have exhausted my family and friends and I am exhausting myself. A continued lack of support will mean that I am soon to be forced to raise my hands and surrender...but Dylan shall not go quietly. I will not be patronized by a system that says, `You did the best you could,' and then turns around and makes it easier for someone else! He may be dependent, he may be brain-damaged, he may be delayed and he may be fragile, but he is mine, and his life will not be in vain. Dylan's blissful ignorance of our circumstances is apparent, but I can guarantee you that he would not be blissfully ignorant if he were removed from his home. He would die.
"When I hear similar expressions of desperation from other caregivers, or worse yet, when I think about the fate of Tracy Latimer, I realize my struggle is not unique or due to incompetence. Caregiving for Dylan is challenging but more challenging is my financial struggle. More challenging is my social isolation because my schedule is filled to capacity with the demands of caregiving. More challenging is the constant stress endured by my other family members. More challenging is my constant fight for much-needed support and recognition..." but most "challenging is the fact that I do not wish to quit but cannot continue because the system insists that I do not have a job!
"Mr Harris, caregiving is a job! It is a stressful, time-consuming, demanding, draining, financially straining and never-ending job and nothing will change the fact that my son requires a...caregiver."
Just in closing I would like to say, ladies and gentlemen, that despite my competency, despite my love for my child and my desire to keep him at home, the cuts and policies of the Conservative government have set up the system so I will fail.
Children are not a priority of this government. The disabled are not a priority of this government. If they were a priority, there would have been no need for me to have travelled 1,000 miles to be here today. Rather, they would have responded with solutions to the many letters I have written them over the past year, including to Mr Harris, Mr Tsubouchi, Janet Ecker, and also a meeting with Cameron MacKinnon from Ms Ecker's office. I can show you the stack of letters I have written.
If any of you believe that children must be a priority, then it is my hope that you will not simply sit up and take notice, but instead challenge yourselves to get up and take action. Tell the Harris government to stop the cuts to disabled children and their families. Tell them that Dylan Manuel and his family are living proof that their cuts and policies will inevitably force very much loved children from their homes. Tell them that I have a job and that it is a job that deserves recognition and rational policies to support my efforts, not hinder them. If you do not, then you have simply condoned my failure with your silence.
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Mr Michael Gravelle (Port Arthur): Thank you very much, Veronica. It's really incredible just to listen to it. Certainly you and I know each other well from our times talking about the situation in Thunder Bay, and I'm very glad you have had the opportunity to come here so that all members, particularly the government members, can hear your story.
I know that you met recently with an assistant to Minister Ecker, a couple of months ago. Can you tell me what response you've received from that meeting?
Ms Manuel: I have received no response. I haven't received a letter, an acknowledgement. I met with him here in Toronto. I had probably a good half-hour meeting with him.
I know you wrote a letter to them. I have written to Janet Ecker. In fact, not only did I write to her, I phoned her Pickering office and spoke to Marilyn and I spoke to Susan and said, "You know, I've had no response to this letter that I wrote to her." It was written in August last year. To date I have had no response, none.
Mr Gravelle: The letter you read to us, to the Premier, what response did you get to that?
Ms Manuel: I wrote that letter to Premier Mike Harris on July 12, 1996. I received a response from him in August saying he had sent my letter to Janet Ecker, because that was her jurisdiction, I guess.
Mr Gravelle: And you didn't get a response to that?
Ms Manuel: I still have not got a response.
Mr Gravelle: Veronica, this may not be a fair question. I think it's important to point out that you are an incredible champion for Dylan. I've met Dylan as well. He's really a lovely boy, and obviously you're a wonderful mother to him. I think what you're trying to say here today is important for people to hear, but unless things change, do you have a sense of just how much longer you can go on with this? I hope that question doesn't upset you. I know how difficult it is for you.
Ms Manuel: Michael, I have indebted myself terribly over the last few years. I'm in debt over my head, and that to me is like -- I don't care. I have a job to do and I have to do it, but it's getting to the point where sure, I was indebting myself but I was eating and my kids were eating. I was taking care of Dylan. Gerald was helping. It was working. It wasn't the greatest solution. It wasn't the greatest scenario. It was one I don't think anybody here would trade places with me for, but it was working.
With the cuts, I mean, $2 for a prescription sounds minimal. That sounds fair. If you have a child like Dylan, it's astronomical. I brought drug receipts with me. From January 1 to yesterday I have spent about $130 and the month isn't over yet. It's just one thing after another.
The free support I had, without rhyme or reason, out. Is this a morals thing? Where is the rationale to it? Those are the answers I want to my questions. Who made this spousal form and what was it based on? It was given to me. I had to cooperate, I had to fill it out or I would have been cut off, but nobody wants to take credit for it. Nobody wants to say, "I'm the one who decided this and this is why."
I think it's only fair when they impose that on you and give you 10 days' notice and say, "Get him out or you're cut off," that they at least respond to you, and I said, "If you get me 10 days' notice, then perhaps you should respond in 10 days," but that hasn't happened. It's been months and I've never had a response.
Ms Lankin: I'm just tremendously moved by your being here today and sharing with this committee the difficulties you're struggling with on a day-to-day basis.
I know, having spent some time in and around the Ministry of Health and in cabinet in the past, that part of this has been an ongoing dilemma for governments, that being the balance towards providing support to those parents who are parenting in their homes and the amazing contrast of that to institutional supports. It's been an ongoing struggle for governments to try and come to terms with that.
I'm struck by the case you make about these further cuts and what it means to your ability to even do that. We know the end result is that if you give up and Dylan is moved into an institution, as you said, the biggest cost of that is, can you be assured he's going to get the level of care you're providing and that he's going to survive? But on a day-to-day basis, as his first move in there the costs are going to be so much more than what they are now. So there's no rhyme or reason to that.
I just want to try and understand a little bit more. I want you to take the time to tell the government members a little bit more about what the cut in family benefits has meant to you in terms of trying to make ends meet.
Ms Manuel: I don't make ends meet.
Ms Lankin: The other issue is the co-resident, the expectation that there should be a financial commitment. Did you challenge them with that, the fact that support for your caregiving is different from finances.
Ms Manuel: I challenged that with them. I mean, this man's inability to support us financially was compensated for in many other ways. He was not on benefits of any sort, had worked at a job for 10 years, is still working, was from a divorced family and pays $1,000 a month in child support to his own children, and I say: "Rightly so. Those are your children. Those are your responsibilities and you should pay them." He maintains them on his drug, dental, all that kind of stuff.
I don't see, when Dylan's own father -- I applied to try and get money from him and I was told, "This is not a priority but we expect this other man to pay." He does for Dylan for free what nobody does. He's the only person in Dylan's life who doesn't get paid. He doesn't get invited to friends' birthday parties. The neighbourhood kids don't come and call on him. My friends don't say, "Let us have Dylan for the afternoon." It's too complex. For Dylan to go somewhere the whole hospital has to go with him, our home hospital is what I'm saying. What was the other question?
Ms Lankin: The cut in benefit levels, what it's meant to your finances.
Ms Manuel: I don't make ends meet, I don't, and I probably won't ever again. I work. That's the thing. I work on a casual basis, and what dictates when I can work is: (1) When they need me, do I have somebody to care for Dylan; (2) did that person come to work on time, did they call in sick or are they scheduled; and (3) was I up all night with Dylan?
Many nights Dylan needs suctioning throughout the night. He needs Ventolin. I'm up twice a night to turn him and position him. His last feed doesn't finish until 11 o'clock at night. He requires 24-hour care. Tuesdays and Thursdays he goes to school during the day to an MD class, so I don't have help those days; the school has the help. But if he's sick and at home I can't transfer the help from the school back into my home. That's theirs; this is mine. So Tuesdays and Thursdays if he doesn't go because he's ill or whatever is happening, I keep him home and I have to stay home with him, that's just part of the thing, and he's missed.
Mr Derwyn Shea (High Park-Swansea): Veronica, I echo the comments of my colleagues on the other side that I was moved by your presentation. In other settings, I understand what you're dealing with and I have consummate concern for what you're dealing with at this point. In some ways I think that is the reason why one of the ministers and certainly the government have moved towards the initiative for vulnerable adults to improve, in fact double, money that's currently in a refocused community action fund and begin to bring some focus to volunteers and families.
Hopefully some of that will begin to address part of the issue you're wrestling with, but I'd like to go to a part of your deputation I'd like you to educate me a bit on, in terms of budget, which I think requires considerable attention. Can you tell me, if I were to ask you to go back two years, how would the budget differ at that point?
Ms Manuel: My budget or the budget that's carrying Dylan?
Mr Shea: Yes, the budget -- you showed a good comparison.
Ms Manuel: My benefits decreased by 21%. In light of taking money away from me, they added extra costs to me. Dylan's drugs, most of them I got for free with a drug card; some of them I had to pay for because they weren't covered. I now have to pay $2 per prescription. In light of taking some money away, saying, "We're going to cut 21%," I thought: "That's okay. Why don't you pay for these drugs, though, the ones that aren't covered?" Now I pay $2 for every prescription; plus the Carnitine that Dylan's on is not covered by anybody. That costs me about $100 a month because he's on it three times a day and the pills are about $1.50 per pill.
Mr Shea: To your knowledge, are there drugs covered now that were not covered say several years ago that would apply in your particular instance?
Ms Manuel: That weren't? The one that Dylan was on was called Vigabitran and it wasn't covered. It was a new drug in Canada and it was under testing, and that cost about $50 per month.
Mr Shea: It's covered now?
Ms Manuel: It just got covered; I paid for it for two years.
Mr Shea: I don't want to prolong this. I'm concerned about it, but I know my colleague would like to pursue a question as well, so I'll ask Mr Carroll.
Mr Carroll: As you stated, it's a very complex issue. There are no easy answers. I'm relatively new into this whole area and the time lines about your not getting an answer to your letter I don't think are acceptable and I will take it upon myself to see that you get an answer.
Ms Manuel: I can give you copies of my letters.
Mr Carroll: I'm not going to take it upon myself to guarantee you an answer you're going to like, but I will ensure you at least get an answer.
Ms Manuel: I have a whole stack of them.
Mr Carroll: What one specific decision could be made by this government that would make your particular situation more tenable?
Ms Manuel: I'm glad you asked me that. I believe that caregivers should be given recognized employed status. I believe I'm going to have to depend on the system to a certain degree as long as I care for Dylan, so why not make it so that I can keep him at home and care for him while doing that? That's the cheapest way to care for Dylan.
I'm proud to say that in five years that child has never had a skin breakdown. He has never had contractures. We exercise him, we turn him, we flip him, we rub him. He is healthy -- as healthy as he can be -- in the sense that we are preventing further complications for him. He is a happy child. He smiles, he laughs, despite everything.
You need to recognize that caregivers have a job. I am not without a job. If I put Dylan into an institution and went and did for another child what I do for him, you would say, "You have a job," but because I do it for my own son, I don't have a job. I'm on welfare and along with being on welfare come your irrational policies that are intended for people who don't have a job. That's trying to motivate people. The only way you're going to motivate me off the system is to make it so hard for me, which you're doing, that I have to make a decision: Can I feed my healthy kids and myself or should I let Dylan go? That's what it's coming to. I can't do both.
The Chair: Ms Manuel, our time is up. On behalf of the committee, thank you for coming all this way.
Ms Manuel: Thank you for having me.
The Chair: As you can see, you've had some impact on the committee.
Is the Ontario Association for Community Living here? They were to appear at 5. We have some time and the subcommittee needs to deliberate about some travel. If I could suggest that we reconvene at five to 5, that would give us 20-odd minutes to have a break and phone in and see what messages you have in your offices. We'll recess until five to 5.
The committee recessed from 1634 to 1656.
ONTARIO ASSOCIATION FOR COMMUNITY LIVING
The Chair: If I could welcome the Ontario Association for Community Living, we'll resume the committee hearings. Thank you for joining us this afternoon. I would ask that you introduce yourselves for the purpose of Hansard placing you on the record as to who is providing testimony. You may proceed.
Mr Bill Nicholls: Mr Chair, ladies and gentlemen, thank you for allowing us to be here. I would introduce our group. Agnes Samler is the executive director of the Metropolitan Toronto Association for Community Living. Jim Turner is a board member of the Ontario association, a member of the Metropolitan Toronto association, and he has a young son -- a young gentleman, I should say -- who receives support from the Metropolitan Toronto association. Rod Walsh is the executive director of the Ontario Association for Community Living. I'm Bill Nicholls. I'm on the Ontario association board as well and a member of the Peterborough Association for Community Living. I believe you have a copy of our presentation, and we shall go through it.
The Ontario Association for Community Living, OACL, was formed over 40 years ago by parents and others who were fighting for the right of their sons, daughters and friends to attend school. Some of you may remember us as the Ontario Association for the Mentally Retarded some 10 or 12 years ago, before we changed our name. Today our membership exceeds 12,000 people within a federation of more than 100 local associations. We work to support children as well as adults who have an intellectual disability. OACL and its provincial and territorial counterparts together form the Canadian Association for Community Living, CACL, which is part of a worldwide advocacy network.
The impact of constraints: The committee will hear from many presenters about the incredible hardship being caused to people with disabilities as a result of government cuts to disability services and supports. OACL agrees that these cuts have had a severe negative effect on people with disabilities. We too will highlight a number of examples of the serious impact cuts to disability services have had on individuals and families in this province. We believe, however, that a review of the impact on cuts to people with disabilities must take a broader view than simply the impact resulting from cuts to specialized disability services. The government must ensure that the entire network of supports and services provided to all citizens is capable of including and supporting people with disabilities, and you will find that this our theme as we present this to you.
The Association for Community Living, as our name implies, believes that people with disabilities have the right to participate fully in all aspects of community life. The stated goal of our association is: That all persons live in a state of dignity, share in all elements of living in the community and have the opportunity to participate effectively.
In order to achieve this, we must do more than ensure that specialized services for people with disabilities are in place. We must ensure that public institutions and activities are able to accommodate the needs of all citizens, including people with disabilities.
The current government has expressed repeatedly its commitment to people with disabilities and a desire to protect the specialized services that people with disabilities require. In defending its record, the government will say that services for people with disabilities have been cut less than other funded programs and will point to the insertions of money such as the recent announcement of $15 million to developmental services funding.
OACL does not wish to question the government's commitment to people with disabilities; there is no doubt a sincere desire by all members of the government to support people with disabilities. We believe, however, that the government misunderstands and seriously underestimates the complex and fragile social structure that must exist to ensure that people with disabilities are able to participate effectively in all aspects of community life.
People with disabilities want to live their lives in the presence of other citizens. This means that when entering the school system, children are welcomed into a regular class in their neighbourhood school; when seeking medical attention, people are able to go to their local doctor's office or hospital emergency room; when seeking recreation and exercise, people are able to attend their local recreation facilities.
While specialized services and programs for people with disabilities are an essential resource for helping people participate in society, they are only a tool. People with disabilities want to live their lives and participate in society in the same way as other citizens. This means that mainstream services must have the capacity to respond to people with disabilities.
The government must recognize that cuts to education, health, recreation, transportation and so on affect people with disabilities in profound ways. In many cases, cuts to these mainstream services have a more severe impact on people with disabilities than on other citizens. When forced to cut budgets, administrators must make decisions to maintain services that meet the needs of the greatest number of people. People with disabilities, being a minority, are often first to lose the supports and services they need to be included in mainstream activities.
We do not expect to convince the government to reverse its agenda for constraint. We hope, however, that the government will come to understand that meeting its commitment to people with disabilities means more than simply protecting funding for disability services. To ensure that people with disabilities continue to receive the supports they need to take their place in society, all public facilities must make special efforts to ensure that they can accommodate the needs of people with disabilities.
School systems faced with constraint must not allow specialized resources for people with disabilities to be eroded. Hospitals must ensure adequate nursing staff to provide the specialized front-line care and support that people with disabilities need. Transportation systems must ensure that people with disabilities, who often have extremely limited options for transportation, receive the services they need.
We believe that the provincial government has a crucial role to play in ensuring that public services maintain a commitment to people with disabilities. The government should, as part of its cost-cutting exercise, establish standards of service that must be developed and maintained for people with disabilities. This would ensure that the network of services provided for citizens does not contribute to the handicap of people with disabilities.
A window of opportunity: We believe that the government has an unprecedented opportunity for developing such standards. The announcements made last week regarding the realignment of provincial and municipal responsibilities as part of the Who Does What exercise are going to require a significant redrafting of many provincial acts, policies and regulations. The government has committed to providing clear provincial standards for many services which will now be delivered by municipalities, such as child care, long-term care, ambulance services, public health and public housing.
In redrafting or developing provincial standards, the government could ensure a significant measure of protection for people with disabilities against the negative impact of social funding cuts. Newly established standards must include expectations for inclusion of people with disabilities and the necessary accommodations for individuals' needs.
Protection of individual rights: OACL continues to have grave concerns about the effects of recent changes to the Substitute Decisions Act and the Health Care Consent Act by repeal of the Advocacy Act. In 1996, the government removed most of the safeguards from these two acts. Staff reductions in the public service will eventually affect the current capacity at the public guardian and trustee's office.
Removal of advocacy and rights advice has the greatest detrimental effect on the very people who are most in need of it. It is a fact that people who would never have come under guardianship under previous legislation are now being declared incapable. The absence of advocacy and rights advice has to be a factor. The effect of cost-cutting on the PGT's office is significant and scary. The level of cuts that have occurred can only be addressed by reduced safeguards, since safeguarding policies cost significant amounts of money and take considerable staff time to carry out.
Regulations have now limited capacity assessors to members of certain professions. This means that the scope and intensity of training courses by the capacity assessment office have been reduced, possibly on the assumption that these disciplines have the necessary skills to know how to assess capacity. Although much of the protocol developed initially remains in place, it could be in jeopardy if there are further cuts.
The effect of the removal of independent advocacy and rights advice from the Substitute Decisions Act and Health Care Consent Act has been to put the onus on the individual to know his or her rights; for example, that he or she can refuse to undergo a capacity assessment, oppose an application for summary disposition or force the application to be dealt with in a hearing where the court would be bound by the prohibition in section 22 and section 55 of the acts. The absence of independent advocacy and rights advice means this is unlikely to happen. In fact, all but a handful of capacity assessments of people with intellectual disabilities since the SDA has been in force have resulted in guardianship. Further, most of these have been by summary disposition where the judge does not have to hold a hearing or have anyone appearing before him or her, since only paper evidence is required.
In order to cut the cost of monitoring by the PGT's office, the government removed the obligation on guardians to file annual reports. The effect of this has been to diminish safeguards against inappropriate activities by guardians.
To further cut costs, the government has removed the obligation to ensure that temporary guardianship was a last resort. The result has been that the PGT now has no requirement to take any steps other than those that are necessary for determining whether an application should be made for temporary guardianship. No effort needs to be made to find less drastic alternative solutions for the individual.
Mr Jim Turner: At the community level, while safeguards for people with disabilities continue to be eroded and while doors to mainstream community resources continue to be closed, specialized community services struggle to support people to maintain a reasonable quality of life.
The pressures on these community services are often incredible. The government points out with some degree of pride that services for people with disabilities have been cut less than other funded programs, and that's probably true. However, this doesn't recognize that these services work within the framework of the community as a whole. As other community resources are reduced or eliminated, disability services are expected to step in and provide alternative resources. As community resources shrink, the demand on disability services grows proportionally. Given this growing demand, the pain of any further reduction for disability services is felt most profoundly.
I'm going to mention later on the Wheel-Trans situation, but this is an example of what happens. The government cut TTC. TTC met its budget by cutting Wheel-Trans. This took a large number of people out of our programs. It took away their ability to have transportation and put incredible pressure on our organization to try to provide for some of the services. So it's this kind of spinoff effect that we're worried about.
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One of the major pressures on community services over the coming years will result from the government's commitment to return 978 people to communities from institutions. OACL applauds the government for this initiative and greets the challenge enthusiastically. This has been the stated policy of our association for about 10 years, and finally it looks like it's going to happen. However, the resources from the institutions that could have been directed to community support have shrunk considerably over the past year.
On page 5 of your copy of this paper there is a series of numbers. I won't get into all the numbers now because it does get a bit complex, but the numbers are there. The end result is that there is significantly less money per individual than was originally planned for and we had hoped for and is realistic. This is going to make it very, very difficult for organizations to do a proper job of repatriating these people back into our communities.
The challenge facing community services which are attempting to design supports is being further compounded by poor implementation practices. In York region, we were told, York region services have been given profiles on 20 individuals, 11 of whom are currently in institutions and nine of whom are currently living in the community. Services are being asked to propose service plans for the 20 individuals using only the resources which have been allocated for the 11. This reduces the average funding available to each person to $30,300, or $48,500 less than the average cost that was originally put up as being the numbers available.
To highlight some of the day-to-day pressures on community support services, we want to look at two of our local associations. The Brantford and District Association for Community Living is an average-sized organization that currently has a significant demand for services that the association is unable to meet. BDACL has a waiting list of 104 individuals. These are all referrals from the community and many are the sons and daughters of aging parents who have provided supports at home for many years. These parents now expect support from the association. The lifetime commitment these parents have made to their sons and daughters has saved the government significant amounts of money over the years, and the parents understandably now expect the government to provide assistance when they are no longer able to do so.
The association calculates that 32% of its waiting list is comprised of people who are currently living at home with aging parents. The government recently announced it would be inserting an additional $15 million into developmental services, $6 million of which will support the service needs of adults who live at home and are cared for by their aging parents. If the association's waiting list is typical of community services in Ontario, we can predict that there are approximately 3,300 individuals living at home with aging parents and looking for support from associations. This does not include people who may be on the waiting list of other community organizations.
Six million dollars is hardly adequate to address this need. If it were used only to serve people wishing service from the associations for community living, it would amount to $1,818 per person per year, which doesn't provide very much, obviously. In fact, associations for community living represent only a portion of the services in Ontario and it can be assumed that there are many more individuals living with aging parents than those we are aware of. Further, the $6 million is not exclusively for individuals living with aging parents, but is to be used as well to support young adults who are leaving the school system, which is another area of need. OACL certainly appreciates the $15 million, but it is difficult to get very excited about it given the scope of unmet needs we see every day.
Not included in Brantford's list of people seeking services are 14 teens, aged 14 to 16, who are wards of the children's aid society. There is an expectation that residential and day services will be available for these young people when they turn 18, but there is no commitment of resources.
In addition to the ongoing pressure of people needing service, the association is having to respond to increasingly challenging needs of the people supported. The association is providing support to people with complex needs who have spent many years in institutional settings or who are diagnosed with multiple disabilities, in particular people who have a mental health disability as well as a developmental handicap.
The association is finding it necessary to provide increased staffing to respond to these individuals' needs, with no additional funding to offset the costs. Mental health services, which are feeling the effects of constraints, are not willing to or feel they are incapable of responding to the needs of these individuals. The association worries that stretching resources in this way runs the risk of placing staff and individuals who are being supported in dangerous situations.
In an attempt to keep budgets on track, the association had to close down services in its day programs for two weeks over the Christmas period, placing increased pressures on families and residential service providers.
As the association attempts to control resources within the association, external forces continue to provide additional challenges. During the recent dispute with doctors, a number of doctors have given up practising in Brant county. One doctor left a caseload of 4,000 people, including 5 individuals who are supported by the association. With the medical system in the area being overwhelmed, the association is having great difficulty in finding new doctors for these individuals. Further, the association is looking ahead and wondering how it will ensure medical support for people returning to the community from institutions as part of the current deinstitutionalization exercise.
As an example of the financial pressures facing the association, OACL recently received notification that their WCB premiums will be increased to $38,000 this year and a similar amount next year. The area office of MCSS has indicated that this increase will have to be found in the base budget of the association. With few alternatives left for cutting, the WCB increase will likely represent a reduction of 2.5 full-time-equivalent staff positions for the association.
The Metropolitan Toronto Association for Community Living is the largest of our local associations. Size has in no way protected it from the pain of funding cuts. In 1995, MTACL identified a deficit of $3 million. This was made up not only of the 5% constraint of the current government, but of the costs incurred as part of the social contract of the previous government and increased costs for items such as utilities or existing employee benefits for which there has been no additional subsidy.
In addition to the existing deficit, the association found itself faced with a number of growing costs related to such issues as WCB; cuts to public transit which translated into a reduction in Wheel-Trans services for vulnerable people; excessive reporting requirements and outdated funding formulas which drive up administrative costs and reduce flexibility to meet constraints; inadequate funding for the implementation of pay equity legislation, which has resulted in additional salary costs; and cancellation of subsidized housing projects. The result of this deficit and other pressures was that MTACL had to take a number of drastic steps, which included:
-- Closure of two residential programs, which resulted in residents being moved to other programs and staffing being reduced through attrition.
-- Attempts to reduce and manage the cost of employee benefits, which resulted in a strike, as many of you know. The work stoppage has been going on for eight weeks, and it is based on the difficult position of the association trying to balance its budget and on the workers trying to protect the benefits they have. It's a very difficult situation.
-- Elimination of 20 administrative and management positions which represent 22% of direct service management.
-- Temporary closures scheduled in residential programs.
In closing, it should not be presumed that these two associations represent extreme or special situations. Community services all over the province are feeling similar pressures. OACL hears daily from local associations about the struggle to meet the needs of people with disabilities while being faced with shrinking budgets and ever-decreasing access to mainstream community resources.
We repeat, however, that this is only one small part of the problem. By far the cuts to mainstream community programs and services pose an even greater threat to people with disabilities. People with disabilities want to live their lives in the presence of other citizens, having access to all the resources our communities have to offer. As these services endure deeper and deeper cuts, their ability to provide supports for people with disabilities grows increasingly more restricted.
We'd like to thank the committee for giving us this opportunity to raise these issues. We hope this discussion will provide some insight to the government into the extreme pressures being felt by people with disabilities and the services that provide them with supports. We further hope that some positive ideas can flow from this process to help overcome many of these challenges.
We are now certainly happy to answer questions.
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Ms Lankin: Thank you all for being here today. There are a number of areas that I wish I had the time to explore with you. I am quite struck by your comments about the effects of the repeal of the Substitute Decisions Act and the Health Care Consent Act and what that means: not having rights advocates and the number of guardianships. It's an area I would like to get some more information on.
But I wanted to focus my question on some of the numbers that you do have in your brief with respect to institutional closings, deinstitutionalization, which I think all parties and most people in the affected community have agreed with as a general policy, that this is the right way to go. But it only works, of course, if the community services are funded.
The numbers that you have, or the expected support from the government, would be for $68,500 per person. That was based on information from the ministry of the $67-million funding for the community support side after downsizing. When the announcement was made July 23, that seemed to be supported by the over-$60-million comment. I'm wondering what happened between then and when you actually found out, and how you found out, that the amount was only $53.8 million, which meant a $28,000 cut to the level of current support per person, taking it down to $55,000 per person. What does that mean for the adequate delivery of services to these individuals as they are deinstitutionalized and brought back into a community setting?
Mr Turner: It's going to make it obviously much more difficult to do this successfully. There are a lot of one-time costs associated with deinstitutionalization, particularly to provide the required services for the individuals themselves. They've been living in this kind of a setting for many, many years. They have an institutional mentality, if we can use that phrase, and it takes a great deal of effort, individualized effort, to break this down and retrain people to live in the community. Once it's done, and it's almost always successful, then you have a different person, a person who can live in the community. But as the costs are eroded, the ability to provide this kind of extra service and extra training also gets eroded. If the costs only cover the physical side of it, then the potential for disaster is very real.
Ms Lankin: How did this amount of money get changed from $67 million down to the $53 million? When did you find that out? What was the explanation for that from the ministry?
Mr Turner: I don't know. Gordon, can you deal with that?
Ms Lankin: Originally you were expecting $67 million, the announcement was for over $60 million, and then you found out it was only $53 million. What happened? What was the change? How has that been explained?
Mr Gordon Kyle: I'm Gordon Kyle, a policy analyst with the Ontario Association for Community Living.
We understand that there will be additional money put into the system -- $13.8 million is in my head -- to bring it up to approximately the $67 million that was originally committed. The additional money, we are told, will be put into the system at some point down the road. It isn't necessarily going to be going in to direct services for people but will be for other community development needs that are identified as the process goes along. The explanation is that this is money that isn't available to the system until some of the facilities are actually closed down and some of the money for the operation of facilities is recouped.
Ms Lankin: So the upfront investment to ensure a successful transition for some of these people isn't going to be there.
Mr Kyle: It's less than we were expecting.
Mr Carroll: Thank you very much, gentlemen, for coming to spend some time with us this afternoon.
Mrs McLeod: And ladies.
Mr Carroll: Oh, I'm sorry.
Ms Agnes Samler: I'm putting a black mark against his name.
Mr Carroll: Make it a small black mark, would you?
Ms Samler: A small black mark.
Mr Carroll: You've made some very interesting observations about the need for more funding for people with disabilities, that they be taken care of in the community, and you've talked about several different areas. Then you go on to talk about changes that this government's made to funding for doctors, workers' compensation, transit, hospitals, education, subsidized housing, pay equity, recreation. You say that because we've changed funding in those models that's also negatively impacting people with disabilities.
Faced with $100 billion worth of debt that we're trying to get our arms around and a government that is not able to pay all its bills, can you cut us some latitude somewhere to do something? Would you suggest we just keep spending at today's levels and keep running up the debt for our children to pay, or do we need to change the system somehow so that we're spending more money on funding people rather than programs?
Ms Lankin: Perhaps you could forgo the tax cut.
Mr Carroll: I'm asking presenters for the answer, please.
Mr Turner: Part of our theme here is to look at systems, look at processes. There clearly are better ways to do things in many respects. One of the things we specifically mentioned is some of the funding. The funding formulae that are currently being used are 25 and 30 years old in some cases and they're used to produce X number of dollars which associations use to operate programs. If associations could be given a greater latitude even in how money is being spent rather than having to spend money in this package on these programs and this package on those programs, the same amount of money given with fewer strings attached, global funding as they call it in the community colleges --
Mr Carroll: You're talking about individualized funding for people rather than programs?
Mr Turner: That's another point. I'm talking about global funding now. I'm not going to the next step of individualized funding. Instead of giving an organization $10 million to do this and $10 million to do this and $5 million to do that and require it to do it, give the organization $25 million and the organization then can create its own efficiencies; it can move money from program to program and run programs more effectively and more efficiently. That's just one suggestion of how we can do things better.
Mr Gerard Kennedy (York South): Thank you for your presentation. It sounds as though, just in terms of the question from the government side, which could be addressed by the tax cut or by a number of another initiatives, there are choices we make. But probably more narrowly it's important that they understand the role of associations like yours and the lives of the people you're assisting, because there seems to be an inference that there's overhead involved here.
I wonder if you can talk to us a bit. Obviously the strike is one unfortunate dimension, but the 5% cut and some of the other constraints you've seen, how have those affected your ability to work for people?
I guess the other thing is that you shouldn't be held responsible for the fact that there are aging parents out there, that there is more need for intermediaries in the community to deal with it as a demographic reality, if I'm not mistaken, that is creating a lot of the demand for your services, as well as the government's own policies of deinstitutionalization. I'm just wondering how you look at your future and where does your viability start to become really affected in terms of being able to provide for what I think, unless I'm misunderstanding, is an increasing demand for the services of your association.
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Mr Turner: The demand is increasing in one respect mainly -- demographically. Overall the demand is not changing. But what has happened in this province over the past several years, and this is very specific to Ontario, is that as community programs were developed and as people were moved out of the institutions, many individual families decided, "I will keep my son or daughter at home. I will use the community programs to the extent that I can, but I will keep my son or daughter at home," rather than put that person into some kind of residential setting.
That was very noble and that was the sign of very powerful, strong parents and, quite frankly, saved the government lots of money because it wasn't the cost of residential care. Now these people are in their 60s, 70s and 80s -- and their offspring are in their 30s, 40s and 50s -- and they are saying: "We can no longer provide residential care for our children. We can no longer do it. We're just too old and too tired. It's up to the association to provide it." That's where they turn and obviously we are saying we cannot provide this service because of the funding base. We consider this a very specific funding issue which in a sense is new because it hasn't been talked about very much before and which the government has recognized by the fact that some of the money announced last week was earmarked for this, to meet the needs of aging parents.
The Chair: Lady and gentlemen, I'm sorry, the time has passed. I'd like to thank you for coming this afternoon and presenting before us. We appreciate it.
JIM AND MARILYN DOLMAGE
The Chair: I welcome Jim and Marilyn Dolmage and their son Matthew. I understand you've been travelling from Orillia, so I hope it hasn't been too arduous. We may be interrupted later on, closer to 6 o'clock, by a vote in the House, so I'll just warn you about that. Thank you very much for coming.
Mr Jim Dolmage: Good. Thank you for having us. We had hoped that there would be four of us here. There are five of us in the family, excluding the dog. The dog really has no relevance other than to the family, but there are three children.
Matthew is the oldest of our children and he has lived with us since he was two and a half months old. When he was born, he needed two fairly major surgical procedures. In medical jargon he was "failing to thrive" in the hospital, so they said, "You can take him home because he's not doing too well here." So we did and we fed him through a tube for the next year, and he grew and learned and put on weight, obviously, and came along wonderfully.
Over the years we've learned a lot from Matthew. He finished high school a year and a half ago. We looked at alternatives in terms of further education. There's a bit of an irony here in that those who often need the most education are given the least education. But there were no educational options beyond high school for Matt, so we've been looking for work. At the moment Matthew has three voluntary jobs that he works at. He is in charge of shredding confidential documents at Orillia Soldiers' Memorial Hospital, which takes two half-days a week; he works at a human resources centre doing photocopying a couple of afternoons a week; and he puts student ads on to the computer at Georgian College for the student council there.
Matthew uses sign language and he uses a computer to speak. He comprehends but he has a fairly substantial gap between what he can tell you or talk to you about and what he can comprehend going on today.
Matthew's dream, I guess, that we've talked about is that he would love to work full-time in an office, whether that's paid or supported, whatever. He has a real sense that he needs to get away from his parents, like most 22-year-olds do. He doesn't want to be in the house all the time. His other dream is to at some point in his life live in his own apartment, and if it would be an apartment building with an elevator, so much the better.
He has a sister, Leah, who is at McMaster, who really wanted to be here today but unfortunately had a class at 6 o'clock so couldn't be here and get back to the class as well. She is in second year. She's studying social justice and human rights issues. Leah's dream is to go to Leeds University and study disability issues in England for a year. A younger sibling is a boy, Jay. Jay's a long way away from us; he's in first year at the University of British Columbia. He received a scholarship offer out there that financially he simply couldn't turn down. The fact that tuition out there is $1,000 less than it is here in Ontario is also significant, but that's an aside. Jay's dream is he wants to be a writer. He would also like to represent Canada in athletics if he's lucky enough to be able to do that. That's the children.
Marilyn and I have been together for quite a number of years as a married couple, and years before that. She has been involved with issues of disability most of her life, and she'll talk about that a little bit. Her first job was at Huronia Regional Centre in 1968. She went there as a social worker and did some very innovative things. She was the first person to arrange for the marriage of two residents there and she started to move people out into the community, which was a fairly radical notion in the 1960s.
When Matthew was born, Marilyn, of necessity, couldn't work full-time; however, she did manage to complete two more university degrees. The last civil service job she did after Matthew started to become more independent was working at a small facility in Gravenhurst, which was an institution that Marilyn was responsible for moving the residents out of. She was so efficient at that that the institution actually closed a year ahead of schedule.
Having been an efficient civil servant, she was let go. I don't know if that's a pattern or not. But at any rate, since then she's been working for a consortium of groups in Ontario. It's called Building Inclusive Schools and it's working on setting up exemplary schools around the province where students with special needs or disabilities are integrated into regular classrooms.
Myself, I'm a high school teacher, so if I start to become a little pedantic, throw something at me. I was a very avid jock and very singleminded when I went into education. Matthew came along and changed a lot of things for me. He made me look at education in a different way. He made me look at social issues in a different way. I'm now the head of the guidance department in a small high school.
All of the members of the department that I teach in also teach classes, so I'm very much in favour of some of the changes that are forthcoming in education because I believe if you're going to be in education, you need to be in front of students. When was Tony Silipo Minister of Education? It goes back a little bit. I was writing articles back in the 1980s about teachers getting a professional college. This is one that appeared in the Globe and Mail. I'm very much in agreement with that.
Matthew has made me in a lot of ways look critically at what I do in my own life and at some of the services that we receive and provide in our own lives too, simply because of some of the things he has had to go through. He has taught us that we've had to look for different ways of doing things. In the early 1980s we took the board of education that I work for, the Muskoka board, to the Supreme Court of Ontario because they wanted Matthew to go to a segregated school in another town. We lived in Gravenhurst, and they wanted him to move out of that setting and not go to school with his brother and sister. We lost that battle, but we learned a lot. We learned there are things worth fighting for, there are things that do change, but often that changes take time and they do take some energy.
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The positive story we want to talk about today is that special services at home have really provided Matt with a life. They've allowed Marilyn and myself also to go on with our lives. There's a lot of good that has happened and we want to talk about that. But Matthew, simply because of when he was born, has been at the leading edge of a lot of things. I'm sure most of you are familiar with David Foot's work. Probably a lot of you have read, if not everything in the book, portions of it.
Matthew at the age of 22 is in a different cohort. For those of you who haven't seen this, this is the population of Ontario -- age up the side, horizontally the population in thousands, females on one side, male on the other. I'm just using the male side to depict where the population's at; the male-female are virtually mirror images. But Matthew's in this cohort here and he's coming from an age group, and it's represented by the individual dots, who are coming primarily out of regular classrooms and regular schools. They've gone to school with brothers, sisters and friends. They've been living with their families. They've been working in their communities. They've gone to YMCAs in their communities and community activities and school dances and all the rest of it. They've been supported by family and friends.
This older cohort up here, the gridwork represents the fact that they've often been involved in community services since youth. Some of them have been institutionalized, some of them are in group homes. You'll notice, however, that I have placed some individual dots up in here and those represent perhaps some of the People First of Ontario whom you heard earlier today. Not to say that all the people in this cohort have had the background that Matthew has, but a lot have, and particularly the younger ones coming up have had these kind of experiences and have a whole new set of expectations.
It's maybe an irony that I'm four years from retirement, but I'm considered to be a young parent because I'm a parent of this new cohort. Matthew has seen things like educational integration happen in his time. He has looked at jobs in the community instead of jobs in a workshop or some of the other possibilities. In the old model, I guess, the government took over for the family, put in all of the time, all of the money and all of the effort. In this new model the family, certainly all the way through school, puts in most of the money and virtually all of the time in terms of connecting the child with the community.
It's not my intention to leave you with any paper. I have copies of all the overheads but what hopefully can happen is we can get some of our ideas across because I'm sure you're going to be having reams of things to read. If you did want copies of any of these overheads I have made them, but like I said, I did not really intend to hand anything out.
Marilyn is just going to talk about the framework in terms of how Matthew fits into things, our lives in the community, and she's going to talk about special services at home, what it has meant to us, what it has done, the years we have used it. She's going to also mention an alternative model which you're not just hearing from us, I'm sure, but we'd like to talk about that possibility too.
Ms Marilyn Dolmage: We want to talk about three particular areas. One is the impact of inclusive education on people's lives and on expectations of government as well. Second is special services at home, a program which pays families small amounts of money to provide the supports when and where they're needed in the community. But along with that, there's an alternative model that extends that type of funding further to provide more options in terms of individualized direct funding, which doesn't exist yet in Ontario. The third thing we want to talk about is the impact of family networks and the support they provide.
I just want to add to what Jim had said. When you look at the older group, those people have come to expect some very, very expensive services in Ontario and their lives require those. What we want to say is that if action is taken now, if change is undertaken, new models entertained, then the younger group of people who have more connections in the community can be supported at much lower cost. It's really a very good-news story for all of us, as politicians, as taxpayers, as community members, because there is a less expensive and more effective model available.
I understand that you're hearing from a variety of perspectives and you're going to be given a lot of facts. What we wanted to do from our personal story is give you a bit of a framework with which you may develop a perspective on what you hear over the next couple of weeks. It's a perspective that I think works because all of our lives are both political and personal and it looks at what we see as the meaning of community. I'm going to put this up now with that little drawing. Can you pass it to me?
We don't see community as a variety of agencies but we see it as connections in people's lives. I think any of us can be the person in the middle of these circles. It's very straightforward. Close to us is the circle of intimate connections, of people who are very close to us in our families and relationships. The next layer is a friendship circle. You could put people as Xs here. You could examine your own life in that regard. The next level, for simplification, is associations, people we may see through our work or our other kinds of connections, the clubs we belong to and so on. Then on the outside circle are the paid services. I think, as you're looking at the responsibilities of government, this has a lot of relevance. We can see our own lives this way, we can look at Matthew's life that way and lives of other people I have known.
One of the people I never got to know was my own brother. When I was four years old, my brother Robert was born. Because he was diagnosed with Down syndrome at birth he never came home. He disappeared; he was never seen by his mother or his sister. I had expected to look after him and he was gone. Where he went was to an institution and the decision was made at the moment of diagnosis that for all of his life he would have no need for family, no need for an intimate circle. No one would ever care for him because they loved him. But what would be put in place was an array of services, 24-hours-a-day paid support.
His circle looked like that: one lonely little person in the middle of some paid supports; no family, no friends, no community connections. Yet it's not just life in an institution that creates that kind of picture. Life in community services can look the very same. There may be no family connections. The family may have lost their connection from stress and other factors, through separation. But there are some supports in place and how many supports depends on how much funding is provided, and that's a very important issue to this person in this circle. The dotted Xs I've put as indicating cutbacks, the effect of cutbacks on those paid supports, and it's a very vulnerable picture.
This is more of a picture for that younger cohort that Jim talked about in David Foot's graph. They've had some family connections, the family has been preserved in various ways or families have stuck to their guns. I think you heard a presentation like that earlier this afternoon. There are some paid supports in place, but those paid supports haven't developed the associations and the friendships. Paid supports can do that, but they have to be oriented in that direction. You can work from the outside in sometimes for people. But the danger here is that some of these paid supports can be cut back, which puts more pressure on the families. Families experience pressure for a variety of reasons. If that breaks down, you have a very vulnerable situation, similar to those we've heard about in the news over the last several years, where family pressures have increased too much.
In Matthew's life we have attempted to give him the same kind of circle as we enjoy and his brother and sister enjoy. Sometimes we're seen as wanting too much, because relative to other disabled people this is a very rich picture, but it's what our goal has been. It's what has driven us. The advice at birth, though, was to find a nice place to put him in. We'd been there. My family had experienced that and had not seen that as an answer, so we rejected the placement at some place like Christopher Robin nursing home. There were no programs available 22 years ago, no family support programs. So in the early years we helped created the supports, and they grew with our community and with our efforts.
We tried segregated school, as Jim has said, and found that Matthew was regressing, frustrated. He had no role models of positive communication, he was separated from his brother and sister, and what we saw was that we were starting to lose that inner circle. The brother and sister who had been his greatest advocates were starting to maybe be embarrassed, to maybe say, "He doesn't need to come to my school." They were challenging us in lots of ways and we said: "That circle has to remain strong. What can we do to preserve it?" So as Jim said, we went through a legal process.
The way we resolved that for our own family, to keep that inner circle together, was to move to another community, because then as now, the legal processes for families to disagree with school placement decisions are extremely frustrating. Nothing has changed in that regard since the early 1980s. There are still families spending a great deal of money and school boards spending a lot of money to fight to keep kids out. To us, that's the vital link, to keep that family going, to keep the connections with the community. It was through regular class placement and support in a neighbourhood school attended by all three of our children that we've kept those circles open for Matthew. That was the most important thing. Special services at home helped us do that.
Very briefly, we received a little bit of money so Matthew could go to Beavers. We had the Beaver leader call us and say, "Where is he? He should be in Beavers. All the other kids are," which was a rare and amazing experience for us. So we found a little bit of special services at home money to send someone with him to support the Beaver leader to do some things differently, for one thing. He also got help to go to Cubs, but by the time he got to Scouts, the kids knew him and he knew them and they could support and trust one another. So we could drop him off at the door like all the other parents were doing.
We worked with the YMCA and received a little bit of extra support to set up a day camp that was inclusive so that Matthew could attend programs as a teenager. He was a volunteer as a teenager with no paid support, just with those inner circles. So a little bit of special services at home money built some very important links for Matthew. He also gained a lot of communication skills.
Is that a call for your vote?
The Chair: Yes, it is. We'll give you a minute and a half to wind up, if you could, but we'll have to go.
Ms Dolmage: Really? And we don't get a second chance?
Mr Dolmage: Would you be back after the break? We're quite willing to wait around.
The Chair: Yes, we can come back. What's the wish of the committee? Come back for another 10 minutes or so?
Mr Dolmage: We'd need 10 minutes. That would do it.
The Chair: Can we agree that those who don't have other commitments will come back for 10 minutes? Okay, thank you.
The committee recessed from 1754 to 1806.
The Chair: If you would like to resume your presentation; sorry for the interruption.
Ms Dolmage: We've talked about how Matthew's life through the teenage years was an attempt to fill in those circles. Another thing I should mention is that because he was in a regular high school, he had access to cooperative education programs for job training. That's evolved into some volunteer work, and we hope eventually into a full-time job.
But what we have to reflect on is, what if we'd followed advice? What if Matthew had lived, or perhaps died, at Christopher Robin home? One option from Christopher Robin, which was closed after an inquest and so on into deaths there, was that some people with Matthew's needs live still at Bloorview hospital.
Jim has some information about costs.
Mr Dolmage: This is from 1994. The sums have changed but the ratios remain the same. Special services at home is a small bite of the budget; I appreciate that. The fact that it hasn't been recognized -- it's a new model, it's a different model than the majority of the funding, and to me it's really the future of funding.
In 1994 there were 10,000 families. It's important to appreciate that quite often on this side you are looking at services to individuals, and on this side, with special services at home, you're talking about services to families. When Matthew gets out and goes to work, there are impacts not just on Marilyn, myself and the siblings but on grandmothers and other family members as well when they see that he is out doing things that he's happy about and proud of doing.
Just going down, things like Bloorview, in 1994 you're talking $235,000 per annum. You're talking also about other things, about 100% of the needs of the person being taken care of here in this left-hand column. Matthew just got a new wheelchair. Assistive devices pays for a new wheelchair every five years. Matthew is in and out of the car, in and out of the van, in and out of the house several times a day. His wheelchair didn't last five years; it lasted four years. Assistive devices paid for 60% of the new wheelchair. My insurance policy, which is at no cost to the taxpayers, picked up another chunk, and Marilyn and I picked up another chunk of it.
We expect that we will be funding Matthew to the same degree that we're funding his brother and sister in that transition between high school and whatever comes afterwards.
Special services at home: I did a survey last summer and I received just over 100 surveys back. Of those that I received back, 72% of the families had had their grants reduced. Their 1995 grants had averaged $4,980; their 1996 grants had been cut to $3,411. Matthew's grant was cut over 50% from what we needed. We had to appeal. We're still going through the appeal process.
Ms Dolmage: Maybe just while you have that chart up with the comparison of services, the costs of programs and supports, the other option for people leaving Christopher Robin home, for example, has been to set up a full-service system around that person 24 hours a day, usually a group home, very highly staffed, lifelong support, annualized dollars. For ever and ever those moneys are dedicated to those individuals for 24-hour-a-day support every day of the year; a great deal of money spent on equipment. We have no home renovation assistance -- volunteers and a lot of financial security in terms of the lives of those people but not the security of people in their lives.
When you cut back a program like a group home for someone who left Christopher Robin home, those cuts can sometimes be taken out of administrative costs. I know that's the ambition anyway. When those costs are cut, who is concerned? Not just individuals, but the executive director certainly, the board of directors, the staff group, sometimes unionized. Families can be organized very much together, so there's a whole amount of power and impact to any kind of funding cuts. There's a whole way of organizing people. You've heard some of that this afternoon, what happens when constraints happen to an agency program.
We also wanted, though, to paint you the story of that other side of that graph, of the less expensive supports where families are contributing most of their time and money. In Matthew's experience with almost a 60% cutback in May 1996 in his hours, there are no administrative costs. Special services at home is 100% job creation. It goes straight to hire a worker, so there is no slush to be eliminated. The cuts come directly out of the individual's life and opportunities.
Mr Dolmage: Let me just talk to that for a second. The Barrie area office, as an example, is the one we're most familiar with, but I did research. I got surveys from all across the province, and one of the real problems -- you talk about the inequities in education. You want to look at inequities, look at special services at home.
There are 12 area offices now. Some of them have no waiting lists. In some of them the parents are completely satisfied. This year, some area offices had an increase in funding. Toronto was an example, an additional $300,000 in special services at home funding. The Barrie area office had $1 million taken out of the budget for special services at home this year, which is why in virtually every report I got back from families in Barrie, yes, they had cuts. Those cuts averaged 30%, which is a much more drastic cut than any other program that I'm aware of in the province has taken. But in terms of the Barrie area office, a small amount of money goes into special services at home.
There's an office budget to begin with, and I can't get the figures, but I presume it's a sizeable chunk. There's $42 million that goes to transfer payment agencies. Special services at home gets $2.5 million. The transfer payment agencies look after about 2,000 individuals. Special services at home looks after 1,300 families. That money, as Marilyn said, is 100% job creation. The money comes to us: We hire, we fire, we administer, we interview, we supervise. Families cannot be paid, by definition, in this program. His brother or sister couldn't be paid to help with him. We cannot be paid, which is why there's absolutely no overhead to this program. Every dollar that goes into special services at home results directly in service to the individual.
Ms Dolmage: The impact of the cuts: What hit us in May was that Matthew was threatened with not being able to go out of the house. We were threatened with job loss and financial burdens. The workers we were able to pull together as a team dedicated to Matthew, listening to his direction, were disappearing and they were able to go and get jobs in group homes at a higher rate. Some families in special services at home across Ontario are asked to pay their workers less than $8 an hour. Some whole parts of the north are even less than that.
The bureaucracy says to the families, "Take it out of your workers, take it out of your hours, whatever, but you will be getting less money." Also, when we appealed our grant, they said, "Well, we're not convinced that there isn't some other way that Matthew could be supported, because we have less money in this pot than we need," but surely there is that big pot of the $42 million, or whatever, of transfer payment agencies. They asked us then to go to the segregated programs, which we're known not to prefer because Matthew's life has gone in so many other directions. We were asked to get on a waiting list for what was a more expensive support option.
Mr Dolmage: This one sheet that I have is from Comsoc's estimates book this year. I look at things, and I'm sure these can be explained somehow by somebody, but to me they don't make sense. I look at what's happening with sheltered workshops in terms that the budget has gone, since 1994-95, from $25 million to $29 million; at the same time, the number of people involved has dropped from 7,300 to 3,500. In other words, the funding has gone up 20% while the number of people involved has declined by 50%. At the same time, special services at home has gone from $31 million to $36 million but the population served has gone from 9,000 to 12,000. In other words, there's been an increase in budget of 16% while there's been an increase in need of 33"%.
I look at the announcement about the extra $5 million going into special services at home and I'm very cynical because I know last October 17 there were 923 people on a waiting list to begin with; at this moment in time I can guarantee you that with the growth there's probably over 1,000. That's going to take $4 million right there. The Barrie area office was $1 million short. That takes the other $1 million. I'm a little disillusioned. I'm very happy that the money is there, but don't tell me that it's going to be a big addition or it's going to make a big impact. It's going to make a huge impact to those people who have been on waiting lists -- believe me, that will be a huge impact -- but in terms of all of the people in the program, it's not going to increase services.
Ms Dolmage: With an increasing number of people leaving school, we're also concerned with the announcement a week or so ago of the $6 million going to help the sons and daughters of aging parents who have been in that older cohort waiting for some expensive programs, in need of those, and also supposedly to meet the needs of some of the younger students finishing school such as Matthew. I think you've heard another presentation that explained that that money won't meet that need either.
What we're interested in, though, is exploring another kind of option that has been pioneered successfully by special services at home. Special services at home won't do some of the things that are needed in Matthew's future, and that is to allow him to leave home, allow him to find other people to live with when we're no longer available or no longer able. The model that gives him the support through the day to contribute to his community, to offer service to others, will not be there if he doesn't live with family.
Also, we're not supposed to talk about employment with special services at home. Matthew is employed as a volunteer and he's receiving support, but we have to call it developmental programming or parent relief. We can't call it what we hope it will be, support for employment, because if we want support for employment, there's another program, which Jim flashed up there on the estimates, called supported employment. It's been cut considerably. Matthew would not be considered eligible for most supported employment programs because of his particular physical needs. He needs somebody with him. He'd have to graduate from a sheltered workshop in order to go to a supported employment program, and we know his response to segregation is very self-defeating. That really won't happen. That route is not open for Matthew to participate in as one individual with a life in the community.
We're looking for an alternative that's been called individualized direct funding, so that the government has to trust families like ours. We hope they've been trusting us for all of these 22 years in supporting us in a variety of ways. At one time, when special services at home began, Frank Drea announced our name in the Legislature without our permission; nobody worried about that in those days. It recognized that special services at home is a very constructive option that rewards families, that thanks families for what they've done. We want that extension into Matthew's adult life.
In the province of Alberta they have such a model of individualized direct funding. In 1995-96, 2,100 people and their families received support averaging almost $36,000 a person. We will lead the way and we would be glad to demonstrate this for others, because we think this kind of story gives people hope.
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Mr Dolmage: A couple of specific suggestions: Special services at home came into being in 1982. There have been basic changes and assumptions since then. For example, in the Barrie area office, and it's probably symptomatic of those across the province, there's an advisory committee on special services at home. The chairperson of the advisory committee is a director of a transfer payment agency. The majority of the members of the committee are workers employed in transfer payment agencies. They all come out of that $42-million bundle. There are two token parents on the committee that advises about this small pot called special services at home. Parents need to be put in charge of special services at home. We're the ones it impacts on and we're the ones who know about it, but that's not what's happening at the moment.
The old assumption was that special services at home was a stopgap program until you institutionalized. That's not what's happening now. People are keeping their children, their young adults, their adults, at home. The worry for all of us now who do special services at home is that there are forms coming out that are asking to prioritize, and the hidden language is: "We're going to cut some people off. We have to know who deserves most, who deserves least, and we're going to cut those off who deserve least." There are some bothersome things in here like, "Please rate your family's level of stress." It's a pretty subjective kind of a thing, but obviously if I say, "Yeah, we're under more stress than somebody else," perhaps our funding will not be cut to the same extent.
Finally, an analogy brought up by a parent at a meeting we held last summer, and Al McLean loved this one, was, "Where do we raise our cattle?" He said: "You know, it's like the system that we went through as farmers a few years back. We had all our cattle in the barn and we kept them in the barn. We fed them in the barn and we gave them lots of antibiotics and we found out we had to pull a veterinarian in an awful lot. It wound up costing a lot of money and actually the results weren't that good. We've now gone away from that and we're now raising out cattle out in the pasture. We're finding that we have lower vet bills and lower feed costs, and the end result is healthier cattle in the end." This gentleman said, "You know, it impresses me in special services at home that we've got a better way, but we're being put out into a pasture with nothing to eat in it."
The Chair: Thank you very kindly for coming all that way today and a very interesting presentation.
Ms Dolmage: Do we have time for questions?
The Chair: How about one question from each side?
Mr Shea: I'd like to pick up on at least one point. The time is not available for us to go into the depth that we'd like, but I first of all would like to express, I'm sure for everybody on the government side, how much we appreciate your sharing your story with us. It's helpful for me to hear particularly and I'm sure it is for everyone else.
I was impressed with a number of points that you raised, not least of which is how we should consider the relationships between home care and the institutionalized mentality that has developed over a number of years and how that's played its way out in terms of funding. That's an issue that we could come back to at some length. You finished off with that.
But at the very beginning of the presentation I was impressed as well to see how Matthew's involved in a number of areas of employment in the community. The word that hit me there was "volunteer" at this point. Obviously we're looking for other kinds of hopes for him and I'm not unmindful of your sensitive comment about where he will be in the future and what his support systems will be.
With that in the background, have you been made aware of some of the new directions? Certainly the Ministry of Citizenship and Culture has moved for the equal opportunity plan, and that is the development of the abilities in the workplace program and the Web site for information to help connect employers with Matthew and so forth. Have you been made aware of that new program?
Ms Dolmage: Not particularly. We find, though, that Matthew often falls between the cracks with those programs, that those programs deal better with people who are very motivated on their own, who have only physical disabilities and not, say, communication and developmental delays. At the moment, we think there are some supports for employment for Matthew that are out there, that are available, depending what happens with vocational rehab for one thing, I suppose. We are left as a family trying to gather a team around us to come up with the concept, with the idea, and we have to sell that to the business community.
We're pleased that some corporations have done that. Laidlaw Transport, for example, has won an award this year from the Canadian Association for Community Living, and it thinks it could convince other employers to open their minds. We've been inspired by people with disabilities who have broken those barriers.
We know there are some supports there. We've mostly experienced falling through the cracks. That's why we would like to be able to have Matthew direct his own support system with our support, with the support of people around -- not to get to the breaking point where he no longer has our support. We think those connections that he's established throughout his high school years will work. That's how the rest of us get jobs. But we need some funding to plant the seeds that are going to grow into that.
Mrs McLeod: Just let me add my thanks to the Dolmages for making the trip in once again, because it's important for us to hear from you. Your leadership role
in the whole area of special services at home has been extremely important.
I take due note of both the plea you make for the importance of special services at home and the fact that $5 million does help the waiting list but still doesn't really meet the needs for adequate levels of support for families across the province. I also just wanted to emphasize that if there'd been a little bit more time and we'd been able to explore the alternative that you've proposed, what happens for the adults who are now ready to move out of their homes or in homes where parents are aging and are simply not able to provide the care -- that was an issue that was also raised by the Ontario Association for Community Living. Of the $15 million in funding that was announced, $6 million of that was to go to support those alternatives, but it is, according to the OACL, $1,818 per person just for the people now on the waiting list.
I just want to reiterate the fact that these programs are so important. They're clearly effective; they're meaningful for the individuals. They're also cost-effective, but you've got to have at least enough food in the pasture to be able to make it possible.
Ms Dolmage: I guess what we missed in the shuffle this afternoon was what we need for a plan. What we had would cost around $26,000 a year for Matthew to have a full, meaningful day of contributing to his community in whatever way that evolves at the moment. He may not continue to need that amount of money. But that's compared to Bloorview hospital, for which he is clearly a candidate. He could have spent his whole 22 years in that kind of an environment, which now costs well over $600 a day. We have to look at those kinds of alternatives, and it's very clearly best for him and best for the people of Ontario in financial ways and in relationships that can build.
The support we had when he left school in June 1995 was exemplary. It created all kinds of links for him. That gave us hope and was an inspiration for other families. We've always tried to do that. We've always hoped that others would be inspired, because you have to see some of these things happening. We haven't had those pictures to aspire to before.
The Chair: Thank you very much again for coming. The committee will adjourn and resume tomorrow afternoon at 3:30.
The committee adjourned at 1828.