[Recorded by Electronic Apparatus]
Thursday, May 11, 1995
.1539 
[English]
The Chair: Order, please.
We are continuing our reference to Bill C-76. Our last witness this afternoon is from the Canadian Association of Independent Living Centres, Traci Walters, national director.
Ms Walters, welcome. We look forward to your presentation.
Ms Traci Walters (National Director, Canadian Association of Independent Living Centres): Thank you. Basically, it is quite a task to face you and have to talk about and analyse this bill. I can barely read it, so I am really going to simplify what I know, what I can understand. The two words I understand are ``block funding''. Maybe I can talk about that.
I want to let you know a bit about the independent living movement. You had Laurie Beachell here, from the Council of Canadians with Disabilities. That is the national, political and systemic advocacy organization for people with disabilities.
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The independent living movement evolved with that and came to Canada. It's in the business of empowering and working with individuals at the local level. CCD and CAILC work hand in hand with each other and with people who have disabilities.
So this movement is a very exciting movement, and I want to tell you a bit about it. It came from the United States back in the 1970s, when a lot of veterans came back from the Vietnam War and were not going to tolerate the way people with disabilities were being treated. They decided they needed to articulate what services were necessary, because generally organizations or big administrations create services that meet their administration needs or staff needs but do not meet the needs of people with disabilities.
In Berkeley, California they started the first independent living resource centre. Today there are 350 in the States. We have 21 in Canada and a number of applications pending.
These organizations are run by and for people with disabilities - with every disability - such as hearing, visual, physical, psychiatric and developmental. We run the organizations. We run the boards. The majority of the people on the board, the staff and the membership are people with disabilities.
This is really important, because people at a board meeting, at the table with all these different types of disabilities, know what the issues are. It is not some do-gooders having tea and pretending they know about the issues. These are people who are facing the transportation barriers, the tenant service barriers, on a daily basis. So these centres serve people in the community.
We utilize and harness people's expertise and experience and share it with other people to come up with solutions. You do not find solutions in medical textbooks. It is generally through life experience as a person with a disability. For example, you could have a woman who has one arm and who has had to figure out how to breast-feed her child. You're not going to find that in a textbook. It is only through information from other people who have come up with solutions.
So it's a resource centre. They also help people articulate their needs, help people identify what it is they need. They monitor the services in a community. They make sure that services are being run effectively, that there is no abuse in institutions, and that maybe no more institutions are built. So they're great for the checks and balances in a community.
The only way I'm going to get through this, I think, is if I talk about personal experience and life expertise, because that way you will understand at a community level the impact of this block funding. I think that worked very well with Laurie, so you understand that.
But just to let you know, over the past few months we were very busy preparing for your social security reform book. We spent months investing a lot of time and energy to explain to the federal government the importance of this type of model and full integration and participation.
Anyway, the book came out. The House of Commons published this book, and we were the only organization mentioned in it as something the federal government should support. It's cost-effective and too many disability issues are medicalized. Everything to do with a disability we stick under health. We medicalize it, and it's costing you billions of dollars. We were recommended in the report, through Human Resources Development, as a very good model.
That was shelved, and now we have this bill to work on.
It seems the only way I can express myself is if I talk about my personal life experience and what happens at the local level, so you will know how much money you are wasting.
I live with a chronic illness, and I was very much an economic liability to government - federal, provincial and local. With a few supports that are needed, I contribute quite a bit of tax revenue to your government. I need to explain that, and then you can understand the impact of this on possibly millions of people with disabilities.
When I was living in Port Colborne - Mr. Pillitteri's neck of the woods - I was quite ill. I have an overactive immune system. It is the opposite of AIDS; it likes to attack my body. I was chronically ill; I could barely walk.
The government invested a lot of money. They renovated my house. They put in $30,000 worth of renovations. That was a cost-shared program from both the federal and the provincial governments. Then I had rehab councillors. I was in rehabilitation and I had OTs, PTs, social workers. I had quite a bit of medication, which was coming from the government because I didn't have an insurance plan. I had a scooter and a scooter lift in the back of my vehicle.
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I don't even know - I can't even guess - how much money went into this situation, but I was very close to becoming so ill that I could no longer work. If that had happened I would have been costing you folks probably $20,000 to $25,000 to support myself and two children through FBA and CPP; they would balance off each other. Then you would have had to pay for all my drugs, any of the assistive devices that I might need in the future. I'm going to guess, but you would have been paying probably $40,000 or $50,000 a year.
Then I relocated to Ottawa and I have a job here now. Through a number of things... there were other factors too; I can't just say one thing or another. There was a bad marriage and stuff as well.
In Port Colborne, where I used to live, home care would not provide me with somebody to give me an injection once a week. I'm on low doses of chemotherapy. They made me go to the doctor's whenever I could. In the wintertime especially I wouldn't bother to do it because I had two little kids to bundle up and I could hardly move. I would go two or three weeks without getting my injection. Therefore I was becoming progressively worse and I was going downhill very quickly.
I moved to Ottawa, and here they have a different type of home care program, with different people involved, and they decided what I needed was a VON to come in once a week and give me the injection. I get the medicine on a regular basis. They provide me with a bit of home support for my children and a couple of nights a week to help me do some major things around the house. I'm a completely different person.
I'm not saying everybody turns around like that, but if you have the supports that you need, that you identify as really being what you need to support yourself... Now, because my disease is under control, I have a good job; I have a good salary. I pay good money in taxes. I own two houses - the bank owns them, mostly, but I'm paying taxes on them. I'm paying medical insurance, so the private insurance company is paying for all my drugs. I'm going to guess right now that I bet I'm giving you people $30,000 a year in taxes, even if it's a gas tax for my car. I'm not an economic liability.
What does it take? Very little in home support, which was identified as what I needed, and the proper injections of those drugs.
So yes, now I'm probably contributing who knows how much to the government instead of being a liability.
I just wanted to explain that so you could understand at a personal level how costly this is going to be for you if you continue to do business the way you've been doing business.
I don't want to knock the federal government because it has provided a great deal of leadership over the past decade, and it really scares me if you pull out right now. It's very frightening, and it's going to be really frightening what goes on in Canada for people with disabilities.
I think what is going to happen is that you are going to offload all your responsibilities to the provinces. What they are doing now in many provinces... they have these local boards. For example, in Ontario they have district health council boards that now decide where the money should be spent in long-term care services and health services. That's what is happening - it's the trend - all over the country.
That is why in Ottawa I had a different interpretation. The reason why they gave me those supports in Ottawa was that they realize a person who is sick does not have to stay at home in order to get support. In Port Colborne they said if you have a disease, it means you should be unemployed and the only way you can get support is if you stay at home and you're unemployed. That is why I couldn't get support. There are two different interpretations.
So you're going to download all this stuff to the provinces. In turn they're going to download it all to the regional governments. Then you're going to have how many thousands of these local boards that are going to be overseeing what people with disabilities get. There's not going to be any consistency anywhere. I swear, I think it's going to be a real mess and a real nightmare. I don't want to condemn this totally, because maybe there are ways we can work with you to ensure that it's not such a nightmare.
I mentioned earlier, Mr. Chair, that 4.5 million Canadians have disabilities. Right now it's estimated that excluding people from employment costs the Canadian economy $4.6 billion a year. Of the 4.5 million, 2.4 million people are of working age, but a minority of those people work.
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For those who may not be able to work, they're costing you millions and millions as well. Even if they're not working, if they're in nursing homes, if they had more control over their lives they could be in an apartment with supportive attendant services, where they're not costing you $500 a day but maybe $60 a day. So there's still a lot of money to be saved.
Systems are designed for somebody to make money. This whole disability industry, which I want to reiterate is an industry, is making tonnes and tonnes of money. People with disabilities still, on average, earn less than $10,000 a year.
There is so much money going into that disability industry, to doctors and to professionals, because you've medicalized the disability. You've thrown it under health. Every time we move we have to get a doctor's letter. A good example of that is if you need a pair of orthopedic shoes, generally by the time you're through you have to get about three doctors', OTs', PTs', assessments for a pair of shoes. That's probably hundreds and hundreds of dollars.
Why can't a person with a disability say I need a pair of orthopedic shoes? I don't think there's a big black market for these orthopedic shoes, that we're ripping the system off and we're stockpiling these orthopedic shoes. They're generally really ugly, but it's as though we're thieves and we have to be controlled and monitored that way.
So we have to stop doing that.
Every time you need the disabled parking permit you have to do the same thing. If you have a permanent disability, why do you have to go back every year and constantly...? If you're classified as having a permanent disability that's not going to get progressively better.... Why do we do all these things to ourselves?
I want to talk again about that local board situation. Here in Ottawa it hasn't all been that wonderful. Quite a bit of it is wonderful, but the local board here in Ottawa is a board of 33 people - the district health council board. Of those 33 people, the majority are stakeholders - all the people who are overseeing where the money goes.
They had a place for three people with a disability. I went on the board. Two associates of mine who work in government, two very articulate people with disabilities.... The three of us could not make it through. We ended up resigning a couple of months ago because we spent eight months constantly having to go over and over again why people with disabilities should be considered first before they make applications or proposals, why they should consult people with disabilities before coming up with these wild million-dollar ideas. It was a constant hassle and the three of us could not take it. We ended up resigning.
So if you think at the local level, or when the provincial downloading starts, people can keep up with it and fight these institutions, there's no possible way. The three of us do this for a living and we couldn't handle it. That's what's going to happen.
Not only that, but you have to consider the stress factor for people with disabilities, the skills level. You can imagine having all these doctors on this board that you have to compete with verbally to try to make your point and state your case.
So I really don't think that's going to work. What's going to happen is probably five or ten years from now you're going to have to re-establish everything because it's going to be such a mess. I really think so.
I think you heard Laurie say the other day that we need some sort of social audit, something to ensure that the rights of people with disabilities are being acknowledged. I think we need some national standards. Even though I've been reading in the paper that Mr. Martin is saying no national standards, we have to do something.
I know you're going to say, well, disability is a social service or a health situation; it's a provincial jurisdiction. We don't agree with that at all. We're talking about citizenship and the right to full access to Canadian society, which is your responsibility as a federal government. It's about full participation, equality and self-determination. You can't unload this responsibility.
So what we're trying to say to you.... I've given you a paper called the Canadian Independent Living Movement - Helping Governments Innovate. We want to talk to you about somehow forming a partnership with you, somehow working together with you to ensure that there's some sort of safety net for people with disabilities.
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With all this wrangling going on, if you're going to do something for people with disabilities to give them the confidence that you're not going to pull the rug from underneath them, that with CCD, CAILC, and our network of independent living centres across the country somehow we can be there to monitor the situation for you, to make sure people have the ability to articulate to the provincial and local governments what it is, maybe what are some standards, some guiding principles about what should be funded in the area of disability...
So I propose, and our board and our whole movement proposes, this partnership with you.
Now we're going to go one step further and propose something really radical, but I thought I'd bounce it off you today to see how you feel about it.
There's an extra cost to disability. You're going to be transferring this block funding now to the provinces. As Laurie was saying the other day, you don't know if they're going to be filling holes in the roads with this money. What we think you should do is think about it for a bit. A great deal of that money goes to administration. It goes to the professional. It goes to the basic administration of all of this.
What would happen if people with disabilities got direct transfers of cash in order to purchase the necessary services they need to participate in Canadian society? What if there were a block in the block that went directly to people with disabilities? Then you wouldn't have to worry about all that huge administration, all the fighting that's going to go on. People would get extra money for the extra cost of disability, and then services at the local level would have to evolve in such a way that they're actually responding to real needs and not the needs of their administration.
I know this is a bit radical, but it's happening in a couple of places. In Ontario there's a pilot project going on now in a Toronto. The independent living movement was responsible for this. The provincial government allocated $4 million over two years to 100 people with disabilities to purchase their own attendant services. These are people with high needs, people who have quadriplegia, disabilities like that.
It's turning out to be, over two years, on average, $20,000 per person per year. Some needs are less; some are higher. Before it was costing some of them $50,000 to $100,000 a year in your institutions or wherever. Now these people have the money. They'll hire their neighbour; they'll hire whomever it is. They will now not be stuck in their supported living projects. Normally you can only get attendant services in your apartment and you have to stay there. This is where you can take your attendant to school, to work, to wherever you want to go. Therefore it's flexible, it's portable. Maybe it sounds a bit radical, but it's working.
You're doing it in Winnipeg. You have a self-manager program there. It's very successful for about 32 different people.
I just want you to think about that concept. In that way you could eliminate a lot of waste and people would be getting exactly what they need.
To recap what we would like to propose to you, we're saying if you download with no strings attached, it's going to be chaotic and a lot of people with disabilities will end up on the streets begging, as Laurie was saying. I have no doubt that that will happen. It'll be a nightmare.
Again, we all think with block funding you need to work in partnership with the independent living movement to ensure that people with disabilities are not facing more disadvantages and further isolation and oppression. Somehow we have to have some standards so people can travel and do whatever in this country equally in any place.
Lastly, if you want to try something different, come up with a different notion, the idea of direct cash transfers is very cost effective. It's meeting the needs of your users, and it would be a great initiative for this federal government.
That pretty well summarizes it. I'm sure you have some questions about that.
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[Translation]
The Chair: Mr. Plamondon, please.
Mr. Plamondon (Richelieu): Thank you. It was an interesting presentation. It highlighted how important government support is for people with disabilities. You are a fine example of success and I believe that when the government takes the time to support these people, in addition to helping them it gets back its money through the taxes that these people then pay, as you said.
You question the transfer to the provinces. It bothers me that you do not trust the provinces because it contradicts what you said, to some extent. You said you wanted to see a reduction of the government machinery, which is expensive to administer. People with disabilities are not consulted enough, for example, and there is too much bureaucracy before reaching the direct services. It seems to me that if we eliminated a level of government and brought the administration and powers closer to the people by giving the power to the provinces rather than to a big pan-Canadian bureaucracy, this would respond to one of your concerns. Your two points seem to me to be contradictory.
As to the level of the direct transfers you referred to, I agree with you. That is why I have only one question on this matter. Then I will let the government side, the people opposite, react with, let us hope, great enthusiasm and positivism to your requests so as to fulfil your hopes.
The Chair: Do you wish to add anything, Mr. Pillitteri?
Mr. Plamondon: Will she answer?
The Chair: Do you wish to answer, Ms Walters?
[English]
Ms Walters: Thank you. I appreciate your insight.
I agree that in some cases it might be closer having it at the community level. It is often the case that there is not the experience or the research knowledge at the community level. Some places might be more sophisticated than others. Right now we see a great deal of discrepancy across the country, where some places have a much better situation than other provinces.
I understand what you're saying. I appreciate it. But I don't know the answer, other than maybe the responsibility being on the individuals themselves to identify their own needs.
[Translation]
Mr. Plamondon: Thank you.
[English]
Mr. Pillitteri (Niagara Falls): Ms Walters, it's refreshing for you to come in here and make this presentation. It's refreshing because most of the presentations we have here are done with a political agenda or are something being repeated by political parties or political interests. But yours is truly genuine and I'm glad for that. Some of us have something to learn from it, and of course we do have concerns.
A minute ago you made the remark that we don't know tomorrow if they'll be fixing potholes in the road or if they will be doing something else with it. As a matter of fact, with the exception of the five sections in the Health Act, they could be doing that right now in this transfer block. It has been said that some provinces already do that, as far as the transfer of post-secondary education and social assistance...they're really directed to that.
You made the point about the different assistance you received in the place you were living in before and in the place you're living now. It struck me, because it is the same province, and this year they were able to make it portable in one part of the province and not in the other part. Where does this stop? What does it change from what we're trying to do in this block transfer if the conditions are attached in the same way as they are attached now in the Health Act, possibly with some cooperation in the education field?
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Would you see any real changes if some of those conditions were attached as they are now?
Ms Walters: Yes, definitely. For example, when I was talking about the local level, why is it that in so many services across Canada you have to be deemed unemployable to receive services if you are a person with a disability? Just as an example, if one guiding principle is that you can receive services whether you are working or not, in that way everybody has the opportunity to go to work and wouldn't have to be terrified that their attendant services would be cut off.
I think we're moving ahead a little, because the federal government has shown some initiative and leadership in disability. They have expressed to this country that people with disabilities should be heard. You've given us money to start our own organization so we can articulate our needs. That is an example of leadership. There have to be certain things that can be said, and we could come up with plenty of recommendations of how to do this. But of course there is a lot we can do.
Mr. Pillitteri: To follow up, Traci, if I might call you that, right now we are not able to hold the provinces accountable for such transfers. You are not lobbying; you are making a presentation on behalf of this group to the federal government.
What stops the people of Ontario, the residents of Ontario...? There's an election right now. They're not concentrating on where to address the questions to the leadership of this province by asking ``Where are you going to be spending the money? You say you are protecting medicare, you say you are protecting this, but how much are you putting into medicare?'' If we are to be held accountable federally, the job of the electorate of the province of Ontario is to hold that leadership accountable for what they are doing.
Ms Walters: I agree with that, but I was also explaining the barriers for people with disabilities. Right now the whole independent living movement - I didn't tell you this part, and I'll make it very brief. We have been a demonstration program of the federal government. Over the past seven years the federal government has demonstrated this initiative, hoping the provincial governments would cost-share when they saw this model demonstrated.
Now, you folks have pulled CAP; you're dismantling CAP. All of us right now, across this country, are just trying to figure out how we're going to keep our doors open in ten months' time. Even though we would like to mobilize and be everywhere and have provincial strategies, we have very limited resources - I am not going to tell you financially; just human resources and the skills level - to be able to address and fight these big health and educational institutions. It is quite a task. I know we have to do it. Maybe with this support and the right things in place we will be able to do that while this transfer business is taking place over the next five years.
There is something we have to be able to do to build this foundation across the nation for people with disabilities to be able to lobby that way, to be able to express their opinion. If you leave us right now and pull that rug, you might as well put an ad in The Globe and Mail saying ``People with disabilities, go back to your institutions'', because that's what is going to happen. That's what we think.
Mr. Pillitteri: Thank you.
The Chair: I must say, I am very moved by this presentation. I love the idea of considering giving the money directly to individuals so they can make their own choices, just as those of us who are not disabled make our own choices with what we do with our money. I love this concept that people with disabilities get together and share experiences and find their own solutions.
I don't know what we can do in terms of this whole ball of wax. Mr. Axworthy has been involved and will be involved in developing national standards. Will you be working with him on that?
Ms Walters: We work quite closely with Mr. Axworthy. When you're done, I'll tell you about what you can do. We've been meeting with Mr. Martin as well, if I can expand on that.
The Chair: Please do.
Ms Walters: If you are in support of this, Mr. Martin has met with a number of my board members and myself and he is quite interested and enthusiastic about this idea. He said he would like to demonstrate how this could save money over a period of time. So we are working with his special assistants and special assistants at Mr. Axworthy's department as well. He was very excited about it, and I guess today he is being briefed about the latest meeting we've had.
.1610
The Chair: Suppose we were to recommend that these discussions continue.
Ms Walters: That would be absolutely wonderful.
The Chair: I feel inclined - I can't speak for other members - to so do.
I want to thank you very much on behalf of all the members for a very memorable and important presentation.
Ms Walters: Thank you.
The Chair: Our next witness is Mr. Farber. Mr. Farber, Ms Brickman, we welcome you again.
Mr. Walker.
Mr. David Walker (Parliamentary Secretary to the Minister of Finance): Thank you,Mr. Chairman.
I would like to make a suggestion as to how to proceed, in confirmation of conversations I've had with the Official Opposition and with the third party.
An opportunity to hear witnesses and to provide briefings from the department has been made to everybody, and the measures that we have in Bill C-70 in fact arise from not this year's budget but last year's budget. All three parties have agreed there is no need for witnesses.
For the record, I have with me two departmental officials from the tax division, Len Farber and Lucy Brickman. As we proceed with the amendments, if there are specific questions from the fellow members of the committee, we'll obviously entertain them.
I am going to propose a total of eight amendments, Mr. Chairman. I have discussed these with the opposition parties. These are straightforward technical changes. In the course of drafting a bill mistakes are always made, and when you get it circulated people point them out. So this is a result of people pointing out specific very small errors.
The Chair: Even if they are right the first time, Mr. Walker?
Mr. Walker: Unlike the budgets.
The Chair: Smarten up. This is your first one. The next budget we don't expect these of you, Walker.
Mr. Len Farber (Director, Tax Legislation Division, Department of Finance):Mr. Chairman, we'll take full blame for these typographical errors.
Mr. Walker: You can tell it must be a minor matter.
I think there is an agreement to proceed on division.
The Chair: Are we agreed?
Mr. Walker: I'd like to go through this now. How would you like to proceed? Clause by clause? Would you like to do the amendments? Am I to introduce the amendments?
[Translation]
The Chair: Mr. Plamondon.
Mr. Plamondon: I wish to make a motion, Mr. Chairman. I propose that clauses 1 to 82 inclusively be adopted, on division.
The Chair: The amendments have to be adopted too. Therefore, as amended.
Mr. Plamondon: Agreed.
[English]
Mr. Walker, if you would very quickly give us the amendments to the various clauses, then we'll do it all very quickly.
Mr. Walker: Okay. You don't need to. He says as amended.
Mr. Plamondon: As amended.
The Chair: Okay.
Mr. Discepola (Vaudreuil): He rarely has good ideas.
The Chair: How many amendments? Eight of them?
Mr. Walker: Eight.
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Clauses 1 to 82 agreed to on division [See Minutes of Proceedings]
The Chair: Shall the title carry?
Some hon. members: Agreed.
Some hon. members: On division.
The Chair: Shall the bill carry?
Some hon. members: Agreed.
Some hon. members: On division.
The Chair: Shall I report the bill as amended to the House?
Some hon. members: Agreed.
Some hon. members: On division.
The Chair: We adjourn to the call of the chair, at 11 a.m. Monday. Thank you so much.