SPER Committee Meeting

SUB-COMMITTEE ON THE STATUS OF PERSONS WITH DISABILITIES OF THE STANDING COMMITTEE ON HUMAN RESOURCES DEVELOPMENT AND THE STATUS OF PERSONS WITH DISABILITES

SOUS-COMITÉ SUR LA CONDITION DES PERSONNES HANDICAPÉES DU COMITÉ PERMANENT DU DÉVELOPPEMENT DES RESSOURCES HUMAINES ET DE LA CONDITION DES PERSONNES HANDICAPÉES

EVIDENCE

[Recorded by Electronic Apparatus]

Wednesday, May 31, 2000

• 1536

[English]

The Chair (Ms. Carolyn Bennett (St. Paul's, Lib.)): Welcome. The group size is a little challenging for the person who has to say who's speaking each time, so it took a little while to get the roll call down.

I am pleased to call to order this very special meeting of the Subcommittee on the Status of Persons with Disabilities, within the main Standing Committee on Human Resources Development and the Status of Persons with Disabilities, pursuant to Standing Order 108(3)(c), support systems for persons with disabilities.

So I welcome the guests and I welcome the members we have. I will hopefully welcome the members who will wander in and out. Wednesday afternoons are sometimes a bit difficult. Main committees aren't really supposed to meet this afternoon, but we seem to have justice meeting this afternoon, which means that one of our heroes, Andy Scott, is there chairing the justice committee. He sends his regrets. The subcommittee of HRD on children is also meeting this afternoon. So we did our best, but we ended up with a little bit of competition.

[Translation]

It's an honour for us to welcome you here on the Hill. This is a special day.

[English]

We are thrilled that we've been able to manage to capitalize on all of you coming to the capital. We will try to have as much of a round table as we can, with a proper dialogue amongst you all, the officials, and the members, and hope we can do a serious update.

We will divide the afternoon into three parts. Part one will be the support systems for disabilities until around 5 o'clock. Part two will be the Centennial Flame Research Award, when we will meet the recipient. At 5.30 we will all celebrate, and hopefully the Speaker of the House, Gilbert Parent, will come as well. We will celebrate not only the Centennial Flame Research Award, but also having all of you here. You will be able to wave to the cameras, as it will be on CPAC. Hopefully some day at 3 a.m. you'll be able to see yourselves. It's always surprising who watches television at those odd hours and calls me the next day.

Almost a year ago, the subcommittee released its report on what we thought were some of the issues you told us were extremely important. Mary Frances has said it's the most requested document, and we are still working to make sure it's in alternate formats. There seems to be some question whether it's available in Braille in the deposit libraries.

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Nonetheless, there are three things we need help with. One is the whole multi-jurisdictional reality of supports and services—even things that traditionally have been provincial. Today, Irwin Cotler told the women's caucus we cannot use the veil of jurisdiction to deny people what they need. I think that's why we're all here. How can we work together to make sure, as Canadians, that everybody gets what they need? We said only through working with the communities—municipal communities, provincial communities, federal communities—can you folks help us move this agenda forward.

On the Social Union Framework Agreement, we had hoped, because there was already a sectoral agreement in the In Unison document, this file would be the quickest to move through the social union framework machinery. A year later, I need to know from you, and the committee would like to hear, where you think that is. We are also hearing about results-based management, all the new tools of government, and a way of beginning to talk about outcomes instead of inputs and how much we're spending on things. Clearly that isn't as important as what we're getting in terms of outcomes and a really full citizenship for all Canadians.

How are we measuring that? How do we decide if we're getting where we want to be? There are three things in terms of the role of the community, the new tools of government in terms of outcomes, and the Social Union Framework Agreement that have all been put forward as ways to stick-handle around the jurisdictional issues. I am very much looking forward, as is all the committee, to your giving us an update on where you think we are, since the report last year. Mainly, we would like your advice on how to go forward and make sure, yet again, we have action.

I am just thrilled that all of you are here.

I believe Laurie and Angelo have a small synopsis. Then we can move to the round table part.

What is the will of the room? Would you like to just run around and know who the players are, in 15 seconds or less? I think it might just be helpful for people to know who's here at the table. I thought maybe we would wait until we introduced ourselves, but I think we want to know who the silent folk are too.

[Translation]

Sir.

Mr. Michel Guimond (Beauport—Montmorency—Côte-de-Beaupré— Ile-d'Orléans, BQ): My name is Michel Guimond and I am the Member for the riding of Beauport—Montmorency—Côte-de- Beaupré—Ile-d'Orléans in the Quebec City region. I am a Bloc Québécois Member of Parliament. Unfortunately, I will not be able to attend the whole meeting of this sub-committee, which I am sure will be both interesting and productive. In about a half hour, I will be replaced by my colleague, Paul Crête, the member for Kamouraska—Rivière-du-Loup—Témiscouata—Les Basques, who is the Bloc Québécois' critic on human resources development.

[English]

Ms. Mary Reid (Executive Director, St. John's Independent Living Resource Centre): My name is Mary Reid. I'm with the Independent Living Resource Centre in St. John's, Newfoundland. I thank you for the opportunity to be here, and I thank you for your opening comments. It's always great to hear you so succinctly narrow down what we've been talking about for the last couple of days. I am also looking forward to the discussions.

Ms. Wendy Lill (Dartmouth, NDP): I'm Wendy Lill. I'm a member of Parliament for Dartmouth and I'm a member of the disability subcommittee. I look forward to hearing your comments.

Ms. Traci Walters (National Director, Canadian Association of Independent Living Centres): Hello, my name is Traci Walters and I'm the national director of the Canadian Association of Independent Living Centres. I'm happy to be here again and I look forward to strategizing on what we can do to move things forward.

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Mr. Mark Muise (West Nova, PC): My name is Mark Muise. I'm a member of Parliament from Nova Scotia and I'm a member of the subcommittee on disabilities. I'm very much interested in the whole issue of disabilities, but I think today is more special because we can get first-hand input and discussion and I think this leads us in the right direction. I thank you all for coming.

Mr. Charles Macdonald (Executive Director, Nova Scotia Disabled Persons Commission): My name is Charlie Macdonald. I'm with the Nova Scotia Disabled Persons Commission and I would also like to thank you for the opportunity to come to this round table today. This week in Nova Scotia we're celebrating the 13th annual Access Awareness Week, it happens, and this year's theme is full citizenship for all. Yesterday we had a citizenship forum where the issue of disability supports and services was a major component of the topic of discussion. I hope to add some of the feedback from those discussions yesterday to this forum.

Mr. Rick Goodfellow (Executive Director, Independent Living Resource Centre of Calgary): I'm Rick Goodfellow. I'm the executive director of the Independent Living Resource Centre in Calgary, and also the co-chair of the Alberta Disabilities Forum. I'm really looking forward to this. I feel very fortunate that you guys have invited one of us from the western outpost to come out here and actually be involved in some of this stuff.

Mr. Laurie Beachell (National Coordinator, Council of Canadians with Disabilities): I'm Laurie Beachell. I'm the national coordinator for the Council of Canadians with Disabilities and I'm pleased to be here.

Mr. Angelo Nikias (National Director, Government Relations, International Liaison, Canadian National Institute for the Blind): Angelo Nikias, director of government relations for the Canadian National Institute for the Blind. I'll have more to say in a minute.

[Translation]

Ms. Lucie Lemieux-Brossard (Treasurer, Council of Canadians with Disabilities): I represent the Council of Canadians with Disabilities. This is also an opportunity for me to step back in time some five years, because I remember our first hearing, on October 31, 1995, which led to the creation of this working group.

Well, work is continuing, and there is a new direction since that time.

[English]

Mr. Louis Lévesque (General Director, Tax Policy Branch, Department of Finance): I'm Louis Lévesque. I work in the Department of Finance.

Ms. Deborah Tunis (Director, Social Policy Development, Strategic Policy, Department of Human Resources Development): Deborah Tunis, director of social policy development at HRDC.

Mr. Allen Zeesman (Director, Income Security and Social Development Studies, Applied Research Branch, Department of Human Resources Development): Allen Zeesman, director of income security and social development research at the applied research branch at HRDC.

Mr. Michael Huck (Member, Saskatchewan Voice of People with Disabilities; and Chair, Social Policy Commission, Council of Canadians with Disabilities): I'm Michael Huck. I'm a council member of CCD, representing the Saskatchewan Voice of People with Disabilities. I also chair the CCD social policy committee.

Mr. Cam Crawford (Acting President, Roeher Institute): I'm Cam Crawford, acting president of the Roeher Institute. The Roeher Institute has provided a wide range of research on issues of public policy in disability over the last 12 years. We've been actively involved in issues of disability support and work through the mainstream process, and we've done other design and blueprints for change in this area.

Mr. Don Gallant (Canadian Association for Community Living): Good afternoon. My name is Don Gallant and I'm representing the Canadian Association for Community Living.

Mrs. Nancy Karetak-Lindell (Nunavut, Lib.): I'm Nancy Karetak-Lindell, member of Parliament for Nunavut, and I look very much to the opportunity to learn from everyone as to how we can help in the communities. In my riding, which is very remote, I keep talking about how we just need to get the basic services available to people, and I look forward to hearing from you all. Thank you.

Ms. Joan Westland (Executive Director, Canadian Council on Rehabilitation and Work): I'm Joan Westland, with the Canadian Council on Rehabilitation and Work. The council, known as CCRW, is a national organization that promotes employment for people with disabilities.

The Chair: And all of you know our researcher.

Mr. Bill Young (Committee Researcher): I'm Bill Young. I'm the researcher for the subcommittee.

The Chair: And Norman is around, the clerk of this committee.

So, Angelo.

Mr. Angelo Nikias: Thank you, Madam Chairperson.

It is truly a pleasure and an honour for me and my colleagues to be here today and to have the opportunity to discuss with you the vital issue of disability supports for disabled Canadians.

There's no question that during the last few decades in Canada, especially viewed from a global perspective, we have accomplished a great deal in the area of disability. There is no question also that a lot of work remains to be done, and that's what we are hearing from our constituents.

The issue today has to do with disability supports, one of the main building blocks of the In Unison agreement. I believe there is a convergence on the point that disability supports need to be addressed in a systematic and concerted way and the governments of Canada, your subcommittee and the community, are all convergent on this point. Let me cite the In Unison report, recommendation 5 of your own interim report last year, and recommendation 43 of the Andy Scott task force.

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In order to understand the issue of disability supports more specifically, the Canadian National Institute for the Blind, with the support of the human resources development department, last year examined the issue of accessibility devices as it relates to blind and visually impaired Canadians. In a report—which we have circulated, I believe, to all of you—called Toward Implementing In Unison, we found that in the area of visual impairment, accessibility devices are not equitably available across the country. I believe we have a patchwork of services in this area, a patchwork of services that are not reasonably comparable across the country as stipulated by section 36 of our Constitution.

I believe this also applies with respect to Canadians who experience other disabilities. This causes real hardship for persons, it undermines the cohesiveness of the country, and it impairs our mobility rights, again a constitutionally guaranteed provision.

Today we want to put forward a set of proposals, measures that we believe, if implemented, will take us forward, and a few years from now we will be able to say that we have made real and significant progress in this area.

The first element in this set of proposals is the reaffirmation of federal leadership in the area of disability supports, leadership in terms of supporting evidence-based research, leadership in building the required knowledge if we are going to move forward.

We believe that the Government of Canada can start now providing funds for demonstration projects and for research to be carried out by the Government of Canada, to be carried out in collaboration with the provinces and the territories, and to be carried out in collaboration with the community, a very important component of this process.

The demonstration projects, the research, can assist us in developing programs where none exist today. These programs must be accessible, they must respond to the needs of individuals, they must be adequate, and they must be portable. The funding must be of an ongoing nature and must lay the basis for further concerted action.

The Health Transition Fund and the children's research constitute examples of federal activity of the type we are recommending here today. These, and the issues that my colleagues will address shortly, are consistent with our shared vision of full inclusion and citizenship.

Michael Huck of the Council of Canadians with Disabilities will speak on the issue of taxation. Don Gallant of the Canadian Association for Community Living will speak to the issue of a sectoral agreement. Lucie Lemieux-Brossard of the Council of Canadians with Disabilities will address the use of the federal Human Rights Act in the area of systemic review. And Laurie Beachell of the Council of Canadians with Disabilities will speak on the need to develop community capacity and the issue of comprehensive universal insurance.

• 1555

The Chair: Thank you.

Michael.

Mr. Michael Huck: Over the past day and a half, my colleagues and I have been meeting. We've been discussing what the hell this is all about: disability supports. We came to agreement, and basically confirmed, that in terms of the designing and the implementing of the disabilities supports program, one of the critical areas is still changes to the tax system. The changes to the tax system we're suggesting aren't new. We're also suggesting that these changes would not, or should not, preclude any sectoral agreement between the federal and provincial governments on the implementation of a disability supports program.

I have to get Cam to turn the pages for me here.

There was general agreement in our community for the implementation of recommendation 51, going back to the Andy Scott task force, which called for the introduction of a new disability tax credit to replace the disability tax credit and the medical expense tax credit for persons with disabilities. The recommendations state that the federal value of the tax credit should be refundable. It should have two components: a base amount available to all and a second amount based on disability expense, out-of-pocket expense.

Out-of-pocket expenses should include medical necessities, expenditures, and employment-related expenses. The base amount should reflect estimates of undocumented expenses. The base amount should be refundable on a regular basis, a quarterly basis, and the tax rate used to calculate the credit should be increased from the 17% it usually is to 29%.

A more flexible new tax measure would help individuals meet their additional costs for disability. This would reinforce that all residents of Canada are full members of this society and that these personal supports, our wheelchairs, our attendant care, whatever, are necessary for us to participate in the community. I believe such a measure would be consistent with the broad citizenship objectives of the federal government and would be consistent with In Unison and other documents produced.

Such a measure would be an important move towards a pan-Canadian program for disability-related supports for people with disabilities. It would be critical to the success of any change to the tax system and to ensuring that there be meaningful engagement and consultation with the disabled community.

People with disabilities are more than willing to dialogue with the Department of Finance or other departments of government to identify the steps that are necessary to get to a new tax measure.

Our community is very concerned as well that within the context of implementing recommendation 51 the benefits of any such measure are not reduced as a result of provincial action. If the provincial governments were able to claw back any benefits, it would make no sense to even get involved in the issue.

Again, we're recommending the implementation of Andy Scott's recommendation 51, which was the product of a lot of consultation with disabled people across the country.

Thank you.

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The Chair: Thank you.

Don.

Mr. Don Gallant: Arising from our discussions over the past day and further to some of the things that Michael has talked about in the tax system, some short-term and some longer-term adjustments, the community representatives who met over the last day and a half were very much in agreement with and supportive of the absolute necessity to establish a federal-provincial-territorial sector agreement on disability supports.

We believe this can be done or should be accomplished within the context of the Social Union Framework Agreement, and that its intent is to enable, facilitate, or perhaps cause a pan-Canadian approach or program to be tangible, flexible, and actually doable.

We believe the ultimate product of that process is a bit of a longer-term process, but activity and action toward it must begin now. It has to be an immediate step around discussions. We believe this is a very appropriate and acceptable form in which the federal government can demonstrate leadership in terms of modelling and support, but also very importantly in terms of provision of funding. We think the federal government, in addition to leadership and support for the initiative, would need to bring to the table the capacity to talk about actual dollars.

In the federal-provincial-territorial discussions on developing this sectoral agreement, we believe it's critical that there be guiding principles developed that would guide the discussions and be part of the development of any new or additional supports and services that would be created as part of this discussion.

Some of the principles we've identified over the past day or so reinforce many of the same principles that have been identified in some very fundamental documents over the past number of years. The framework sectoral agreement would have to address issues of comprehensiveness, universality, accessibility, quality, and accountability. Those are the five guiding principles.

The group that talked over the last day and a half were also very clear that when talking about accountability, we want to suggest to all the partners—federal, provincial, and territorial—that accountability doesn't mean simply a reporting, a quantitative “Here's what we've done”. We want the accountability to talk more in terms of social audit and give clearer capacity for community participants to be involved in identifying what we want to measure, the value we would place on those kinds of things, and the whole set of indicators that would reflect success.

In addition to the principles that would guide the discussion and the framework, we're also very concerned that those things that do get developed would also be in accord with certain service practices. Among those we thought were very important were that they would have to be in accord with the whole concept of consumer control; they would have to be discussed and delivered on an individualized basis, reflective of individual needs and addressing individual kinds of issues; and overall, they really should be in accord with and supportive of the independent living principles—consumer control, empowerment, decision-making, and those kinds of things.

We believe the things I've just very quickly talked about are very supportive of measures and recommendations previously put forward, specifically recommendation 43 of the Scott task force. We also believe, or at least I believe, it's also supportive of one recommendation made by the interim report of the actual committee—recommendation 5, I think that is.

We're also very conscious of the fact that as you have the discussion around the development or the establishment of a sectoral agreement, one of the major issues before you can have very discrete delivery here is the whole issue of cost. We believe part of the identification, the quantification, of the cost will require significant conversations with the provinces, and that collectively the actual cost may be able to be identified and quantified over the next number of months.

We also are aware that currently there may be available within the federal jurisdiction, most notably Human Resources Development Canada, some moneys for some research development kinds of initiatives. We were suggesting a very strong support of that and that maybe some parts of that money in the very near term could be used to assist the development of the sectoral agreement around quantification of costs, some research into the whole assessment procedure—income and assets testing and the implications for development of a pan-Canadian program.

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The last point I wanted to make relative to this particular recommendation is that as part of the research development initiative, we thought it would be a very good idea if the research could attempt to look at situations that exist within current policy frameworks, provincially and territorially, that have allowed for or led to some very positive outcomes for people, and try to identify within those the things that led to those positive examples.

So instead of trying to put forward those things that are not working and suggesting how to do it better, perhaps identify those things that are in fact working, either intentionally or unintentionally, and try to analyse them and maybe use that to generalize and apply to other kinds of framework situations.

The Chair: Thank you very much.

[Translation]

Lucie.

Ms. Lucie Lemieux-Brossard: This is one of the rare times that I will be speaking to you in French. When I appear here, I normally speak in English.

When we look at federal jurisdiction in this area, we always seem to refer back to the Scott Report and to the need to review the Canadian Human Rights Act. Some things have been undertaken and some things have been achieved. For example, there were the amendments passed on May 28, 1998, concerning mandatory accommodation. We are still waiting at the present time for the report from the review committee on this.

There is, however, an area that has not yet been dealt with, and which is becoming critical for us. It is the ability to use the Canadian Human Rights Act and the Canadian Human Rights Commission, not only to look at the broader prism of a whole set of problem situations or, systematically, the situation of persons with disabilities, but particularly to find systemic solutions. At the present time, we must submit complaints one by one to the Human Rights Commission, and the Commission settles that problem for a given place. The entire Act should be reviewed so that problems can be dealt with, in a broader fashion, once they arise.

If a deaf person files a complaint because there is no telephone with a teletypewriter at the Toronto Airport and that person wins his case, the problem will be settled at Toronto Airport, but not at Vancouver and Dorval airports.

The legislation does exist, and there are tools, but they are being applied case by case, on the basis of individual litigation, and we always have to go back to square one. Finally, at the end of the day, we start wondering if the Act really is useful.

It is important to scrutinize and review the Canadian Human Rights Act, looking at it broadly and systemically, and that includes the role of the Canadian Human Rights Commission which is defined by the legislation. That will allow us to deal with situations systemically and to find remedies and solutions that are also systemic.

[English]

Mr. Laurie Beachell: The final point I would like to make is that the points I've made basically relate to short-term initiatives. While we recognize the world does not change overnight, we believe action has to start somewhere.

Having said that, one of the other short-term issues is that of resources for community organizations. Community organizations in the last number of years have been greatly diminished in their capacity to bring people together, to conduct their own research, and to bring forward valued advice for various levels of government. The federal government has played a leadership role in providing resources to community organizations, but it has remained static for the last three to four years. Without significant increased investment in community capacity-building, national organizations and their membership across the country really are going to find themselves limited in their ability to provide you with good advice and information. We see this as an issue of citizenship, of engagement, an issue that governments at all levels must address.

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CCD, the Council of Canadians with Disabilities, organized and fostered and encouraged the meetings of the last two days, but frankly we can't do it again. We've begun the discussions and we have no money to have another meeting. We have no way of bringing together the various players from across the country for a discussion on new initiatives, etc., yet we are expected to participate and offer good advice to federal-provincial-territorial forums, working groups, parliamentary committees, task forces, etc. We're frankly hemorrhaging with the demand for advice and the inability to do the proper research and bring to the table the needed information and research.

That being said, one of the issues we talked about in the last two days, which we recognize is a longer-term issue and not on the front burner, is the issue of comprehensive disability insurance and the issue of a more radical reform of the income support systems in this country. This remains a critical issue for all Canadians with disabilities, in that poverty remains one of the fundamental characteristics of a person with disability in this country. Unless we can address the poverty of people in a more substantive way and look at this in the long term through the myriad of programs we have in place, all of which are piecemeal and all of which have their inadequacies or are a disincentive to employment, etc., in the long term we're not going to be able to ensure full citizenship for people with disabilities.

We welcome the opportunity today to present to you what we have. We welcome the opportunity to engage in a dialogue with you around this. While we welcome the opportunity of the brave new world of defining social policy under a social union agreement and In Unison, we have to admit and say to you that presently many of those doors are closed to community organizations. The Government of Canada is the body that has encouraged citizenship participation, but many of the doors at provincial levels are closed to serious consultation with community organizations. Unless those become open, you actually are creating social policy in the dark, without the input of those people who are most directly affected.

So we welcome the new opportunities. We are pleased to be before the committee one more time. We thank you for listening to our concerns.

The Chair: Thank you very much.

[Translation]

I wish to welcome Mr. Paul Crête, who is the Member for the Bloc Québécois.

Mr. Paul Crête (Kamouraska—Rivière-du-Loup—Témiscouata—Les Basques, BQ): I must apologize for being late.

[English]

The Chair: We have found at the back the truly wonderful Pauline Mantha from the Learning Disabilities Association. I believe you're the new chair.

Ms. Pauline Mantha (Executive Director, Learning Disabilities Association of Canada): Yes, and this is Elizabeth Gayda.

The Chair: Excellent. Welcome.

Ms. Pauline Mantha: Thank you.

The Chair: I'm sure there are lots of questions. I just have one for Don.

The issue of comparable quality was talked about in the Social Union Framework Agreement. Is that something the community can help with? What is your experience of how that's happening or not happening at all?

As a committee, we have received Madame Falardeau-Ramsay from the Human Rights Commission. There's no question that the majority of the complaints to her department are about disabilities. She is obviously eagerly awaiting the review, as I guess we all are, in terms of whether there would be some capacity to do some systemic and proactive audit so that when it's fixed, the Greater Toronto Airport, Dorval, and everybody else knows they have to pick up their socks. There would be some teeth in that, we would hope.

The other issue, in terms of moving forward, is that in the federal-provincial negotiations, I think we're prepared to let that happen in order to get the Social Union Framework Agreement in closed doors. Do you have some suggestions as to how the community could be involved in moving forward in the federal-provincial framework in terms of involving citizens and taking solutions to the table? It sometimes moves things along pretty quickly if there's a ready-made solution that can be taken forward.

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Those were just questions that as each of you speak....

Mark has a question. Was there anything that the officials wanted to immediately raise? Louis, you usually have some.... Why didn't we do that medical tax credit?

Mr. Louis Lévesque: Thank you for putting me on the spot.

Fundamentally, there are two big issues that have to be sorted out. It's easy for me as an official to point them out, but it's a little bit less easy to sort them out. What is being suggested as a fundamental change in the role of the federal government is to get straight into the business of income support in a broad sense for people with disabilities. That's what the refundable disability expense credit is. In addition to that, there is a component that has to do with subsidization of supports, which we do to some extent now. We have a refundable credit, but it's very targeted to working people with disabilities. What is asked for is a major expansion of that.

That raises fundamentally two big issues. One is fiscal cost. What would it take to have a significant impact and major league addition of resources? It's basically up to elected people to decide on the priorities. The other one has been mentioned again and again. It's an issue of federal-provincial relations. One of the last things you want to end up doing is a federal move that's to a large extent clawed back by provinces. So you need to have some major federal-provincial agreement as to directions in terms of complementarity, who does what, etc.

I'm pretty sure a lot of people have in their minds something like the national child tax benefit as a model. It's a compelling example, but you have fundamentally a political issue around resource priorities and federal-provincial relations. These are tough issues and certainly not for me to handle at this point.

On the positive side, I have to do the finance routine of propping up what we did. Certainly the government seriously put a lot of the recommendations of this committee into action in terms of the budget and the indexation of the tax system. That means that for all the measures that affect people, that are a benefit to people with disability, the real value will be protected and supported.

In terms of indexation, it's not really important for people like me because of my salary level. There's bracket creep, but it's not the end of the world. But if you're talking benefits for people with low and modest incomes, indexation would protect them fully in the future. So that's a positive step. There were a number of other measures that were recommended and were put in place.

Yes, there were some small positive steps. I think it's pretty obvious from the hearings that people want more quantum leaps. It's not for me as an official to solve that one.

The Chair: I would just like to thank Louis. He was so open and honest at the study we did on the tax system just before the budget and the letter we sent to the minister. We were very happy that Louis was there shepherding this through. All of us at the table thank you. It's rare to have an official who is as frank and able to move things through, and we do appreciate it.

Mr. Louis Lévesque: While I'd like to take the credit, the reality is that for a number of reasons, something I learned in the process is that in a lot of family and personal situations, Minister Martin is extremely sensitive to issues of people with disabilities. So it's more of a life survival kind of issue for bureaucrats in the department than anything else.

Voices: Oh, oh!

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Mr. Laurie Beachell: Can I make a quick comment on the tax side? The comment from Louis suggested that the tax credit, etc., was an income piece. We do not view this as income; we view this as offsetting additional costs of disability. It is in the area of disability supports. The base level is a recognition that people with disabilities face additional costs that other Canadians do not face, and the medical expense credit is again a recognition of those additional costs.

We are not talking about the tax system and the revisions we're proposing in the context of a vehicle for addressing major income. We are talking about it as a vehicle for addressing disability supports in order to level the playing field so that people with disabilities who have to pay for certain things that the rest of the folk don't are not penalized for that. To have it addressed as income raises the possibility or the fear that whatever we do in this, the provinces will then treat it as income and will deduct dollars from people who are on social assistance, which is not our desired result.

Mr. Louis Lévesque: You're absolutely right to correct me on the principles.

My mind was more on the mechanics, and what I had on my mind was exactly what you said at the end. In real life, in most provinces social assistance payments are higher for people with disabilities than they are for “able to work” people. In a mechanical way, most provincial social assistance systems do not make subtle distinctions about what your resources are for. If you get extra resources, the regulations or legislation under social assistance claw that back automatically. That's just a mechanical issue.

So you're absolutely right in correcting me on this. But fundamentally, the issue is that if we were to do this with an agreement with the provinces, it goes back to the mechanics of the income support system that provinces have.

The Chair: Mark had a question.

Mr. Mark Muise: Thank you, Madam Chair.

It was Mr. Huck who was speaking about the system and how taxes could be used to benefit those with disabilities. I fully see the benefit of that, but I'm going one step further, and I'm wondering about the people who don't have the income. How do we ensure that these people receive benefit?

Mr. Michael Huck: I think that was one of the elements of the Andy Scott recommendations, that through the process of a refundable tax credit, even people who are not receiving income or employment income should be able to claim out-of-pocket expenses or basic amounts.

When you're a disabled person and you have a mobility disability, you can't take just any apartment. You have to find an accessible apartment, and that costs a lot more. In my own situation, I'm not on social assistance, and I pay nearly $5,000 a year for tenant care. That's a hell of a whack for me. I would like to be able to get those expenses back, because it reduces my ability to participate in the community.

But for those who aren't working or on social assistance and so on, I think there has to be some type of basic allowance that isn't clawed back by the province. If it's clawed back by the province, there's no point.

Mr. Mark Muise: That leads me to what Mr. Beachell was speaking to when he made reference to a universal disability plan. I'd like to hear a bit more about that, such as how it would work and how people would qualify. For a plan to work, more people ought to be paying in than taking out, but if you're disabled, you're not going to be able to buy the plan. I'd just like to understand that a little bit.

Mr. Laurie Beachell: In a very concise way, it is a complex and long-term piece in that we have a range of plans across this country. We have everything from Workers' Compensation Boards to social assistance. We have long-term disability, including private. We have group benefit packages that have disability benefits, etc. We have the Canada Pension Plan, with a disability benefit. We have a whole range of income support programs here.

• 1625

What our organization talks about is a premium-based program whereby all Canadians are contributing to a plan that protects you against disability and the fact that you are going to become poor. Millions of Canadians are already paying into a plan, either private or public, such as Autopac, etc. We have a myriad of programs. We have billions of dollars going into these programs. We believe there are ways to create a universal program that all Canadians pay into and have eligibility for. This is a long-term goal, because what you are taking on in doing this is radical reform of the insurance industry, of workers' compensation, of the Canada Pension Plan, and of social assistance.

It's not that we're not spending enough money in this area. We're spending billions of dollars in Canada on disability support payments through all of these various programs, but we have not rationalized all of this. In Canada you get income depending on how you became disabled, such as at birth or by accident or if there's somebody else you can sue, and that determines whether or not you're going to be poor.

We have called for a long-term review of income support, either through a royal commission or a parliamentary committee. It was attempted in the 1985 federal-provincial one, but again because of the obvious political implications, there has not been much movement here.

[Translation]

The Chair: Mr. Crête.

Mr. Paul Crête: This is a very interesting discussion and it is quite symbolic with respect to the issue of social union.

You know that, 20 years ago, Quebec established an office for persons with disabilities which offers a whole range of services. There is a network of adapted work centres, outreach manpower services, to help persons with disabilities find jobs and job support programs. So, there is a well-established system which exists and which is related to the entire issue of social union.

Our concern should of course be the service offered ultimately to the person, but, paradoxically, where the rest of Canada seeks to do more for persons with disabilities, according to the evidence that I have heard, we in Quebec have gone much further than the other provinces. Quebec is able to offer a whole range of services, and it has not done so in the framework of social union. It did so a long time ago.

Do you think it would be good to establish, at the federal level, a secretariat that would be responsible for all issues concerning persons with disabilities, all issues that come under federal jurisdiction? Don't you think we should refer these matters to such a secretariat rather than refer them to a huge department like the Human Resources Development Department where they may well be neglected? Shouldn't we envisage the possibility of such a secretariat so that we can correct any existing shortcomings within five years?

I will give you another example. We have heard about the Child Tax Benefit and the mechanism that was established with the provinces allowing Quebec to offer daycare services at $5.00 a day. This meant that many people were paying for daycare, but were unable to claim their deduction. There is therefore part of the reform which is incomplete because the federal government has not adjusted its tax system to that reality.

While respecting the initiatives undertaken by various provinces, how can we come up with a more efficient, operational formula which would better benefit persons with disabilities?

• 1630

I will conclude by saying that I myself am an interesting example. I represent an area where there is an independent living centre in Trois-Pistoles. It is a federal structure but we also have provincial structures. There is a CEMO and other components of the structure existing in Quebec. I'm very aware that, locally, people strive to see that everything works together, but this is not a result of the structure. It is the result of the effort put in by people working with very limited resources.

Ms. Lucie Lemieux-Brossard: Being from Quebec myself, I will answer Mr. Crête's question. First, let me give you a brief update. It is quite true that we do a lot of work with the OPHQ, but the OPHQ no longer offers services. Everything has been transferred to the appropriate departments. That is also the case with the CITs and the CTAs. We were talking about the services of adapted work centres or integrated work contracts and the way to obtain grants. Now, the CITs and the CTAs come under the federal government's Integration Fund for Persons with Disabilities and they are complementary.

So, all existing programs presently work together. In Quebec, people get a little bit from the provincial government and they fill it out with what they get from the federal government. I think that this is a perfect example of what has been said from the outset. Through the process of social union, there is consistency, uniformity. It can be achieved.

However, where there can be a problem is in the area of individual services. Why does Quebec not have services for people with learning disabilities when that exists in all the other provinces? Why is it in Quebec, despite the Office des personnes handicapées and the decisions that it makes, there are no services for post-secondary students who have learning disabilities or mental health problems, in spite of the money transferred by the federal government? Why can they not be recognized if they don't suffer from one of the four principal functional handicaps?

There are subtleties. There are agreements to be made. At the end you spoke of the way to achieve something. I think that one of the ways, as was said earlier, is to implement the idea of respect for our right to mobility, which means offering adequate services that meet real needs, the set of needs defined by the individual.

At the end of the summer, we will have a complete assessment of the home-care services in Quebec. I am part of that group and I can tell you that there will some big surprises. From one CLSC to another, services are not offered or are not even assessed.

The Office, with the international network on the disability production process, has clearly demonstrated the gap that exists concerning compensation for supplementary costs, depending if you are covered by the CSST, the CAILC or welfare. Everything said across the country about individual services is all part of it. No matter where someone lives in the country, no matter what provincial structures and programs exist, we would like to see a uniform quality of life. To that end, the same quality and quantity of services has to be offered to someone living in Montreal, in Ottawa, or in Maniwaki. People must be able to access these services without having to leave their job for reasons of accessibility, and then they find themselves left with nothing.

It has nothing to do with the political structure. It has nothing to do with the identity of the agency offering the services. They must work together. Why should citizens be treated differently if they happen to live in Quebec or in Newfoundland? When you talk about $5.00 daycare, you must not be fooled. Given the number of places available, there is no longer a single disabled child in daycare because they cannot afford to have attendant care. That has been abolished. The Office has not been able to recover those services, and now there are many people who no longer have subsidies for daycare. By gradually implementing the new program, they have been eliminated.

That is why we always speak of systemic review. You have to stop looking at what's ahead, at the small picture, stop asking which department is responsible and start looking at who we are as people. I became disabled and I made my husband disabled because I was refused service. I was told that I had to exhaust my personal resources. What's more, we have a child who has always had disabilities, but he cannot get any service because he is in a grey area. Where will I get the money to pay for those services?

• 1635

Mr. Paul Crête: Ms. Lemieux-Brossard, what you say is very interesting. However, the model that you are proposing will lead us to the same dead-end in witch the health sector now finds itself. At the present time, clients of the health care sector often call on the provinces, but they also are short of funds because of the federal government's transfer payments.

The model that you are proposing could lead to the same result if the individual is not placed at the very centre of activity. We mustn't set up a system where the province would become the service supplier when it does not have the financial means to do so. We think it is important to clarify this.

In another vein, and just so we don't forget it, I would like someone to answer my question on the relevancy, or not, of grouping together federal services in a type of secretariat.

Finally, let's discuss agencies for persons with disabilities. I may be mistaken, since I'm not really a specialist, but it would seem normal to me that, in a second generation of intervention on behalf of persons with disabilities, each department should assume its share of responsibilities. Obviously, the problem is that the responsibilities must not be avoided. They cannot be become a 35th priority. I would agree with you on that.

Ms. Lucie Lemieux-Brossard: I will answer your last question and Mr. Nikias will answer your first question.

There is no problem. However, it does appear somewhat odd that, after 20 years, we still have the same Act which has become obsolete, which does not meet our needs. It is high time for a review of the Act to secure the handicapped in the exercise of their rights, which led to the creation of the Office des personnes handicapées. It has been pending for seven years, but it has not yet been done. The role of the Office, as defined in sections 25 and 26, has never been implemented. We would hope that it might now apply. However, its status must be reviewed.

However, the OPHQ is not a panacea. There are commissions in other provinces that do exactly the same thing. The Office must be maintained. Nonetheless, since there are some in other provinces, that does not prevent... Since the Office works very well with COPHAN and AQRIPH, and since we often work together in advisory and tripartite committees, it may very well be that—and this is my personal opinion—it could be part of a federal-provincial linkage in applying In Unisson. I see no problem unless partisanship enters into it. It's being talked about. I can tell you that we will not get involved in political debate because it is not up to community groups to do so. I think that the Office, with Mr. Rodrigue, might very well establish a communication link through COPHAN, through AQRIPH, through OPHQ, through the CCD or through other agencies. That's not a problem, and we shouldn't try to make it one.

Mr. Paul Crête: You haven't answered my question on money. Aren't you afraid that you would be repeating the model...

Ms. Lucie Lemieux-Brossard: Mr. Nikias is going to answer. I said that I would only answer your last question.

Mr. Paul Crête: Fine.

[English]

The Chair: I think we should move to the very patient Nova Scotia. Mr. Macdonald.

Mr. Charles Macdonald: Thank you very much.

Certainly a well-funded and properly structured office or secretariat of disability issues could have certain value to the federal government in harmonizing actions with the regions around disability issues.

I come today following meetings yesterday in Nova Scotia, where we had approximately 100 persons with disabilities from across the province discussing the concept of full citizenship and putting it in context at a time when the fiscal issues are the main topic of concern in the province. Deficit and debt reduction are indeed the priority. Bringing persons with disabilities into that context, talking about things like inclusive transportation, inclusive schooling, making decisions through personal choice and risk-taking, etc., certainly does bring out a certain level of discussion in Nova Scotia, which definitely would be considered a have-not province in the matter of fiscal realities.

• 1640

We had a report on In Unison, and I know the topic you wish to discuss today is what the community thinks of the implementation phase of In Unison at this point. What difference has it made in the year or two years since it was implemented?

In our discussions yesterday with the community, one example of how the community views In Unison at this point was that there is a representative of the federal government in each of the provinces on a well-constructed high-dive diving board waiting to jump, but they're really considering that maybe they'd better go back down and rebuild the diving board before they commence to dive together. I think it points to the need for action, very pragmatic action.

When we were with the community yesterday and we looked at the area of disability supports, we looked at three areas: cost of disability, personal disability supports, and infrastructure, infrastructure being inclusive transportation, supporting inclusive schooling, supporting communication, supporting access.

Really the recommendation from the community in that area is that there is a need for federal leadership. There's a need for a national infrastructure for disability access. What that looks like could be determined through arrangements with the provinces, municipalities, private industries on some cost-sharing basis. That baseline community infrastructure is a definite personal support need that the community identified. I wasn't at the meetings today in Ottawa, but certainly the recommendations of the community in Nova Scotia are very parallel to what was discussed in Ottawa today.

The other issue in the area of personal supports is the continued need for a disability tax credit in the area of cost of disability. There are families that give up opportunities in order to care for children with disabilities. There are persons with disabilities who have costs that the average Canadian does not have to consider, whether it be additional costs of housing, maintenance of housing, shopping, very basic community access needs, etc. Those are additional costs to persons with disabilities, and there should be some form of tax measure to address that and to continue to address that.

In the area of personal disability supports, the concept of a refundable tax credit for those costs was raised as well and is supported by the community.

We also talked yesterday of a national disability support benefit that would parallel to some extent the national children's benefit. Leadership must be shown by the federal government from the point of view of fiscal capacity for provinces to be able to develop systems for personal support. It was also identified that the federal government can engage in demonstration projects, that there's a key area of need for identifying demonstration projects for disability supports.

The key message I took from the meetings yesterday and from all the meetings we've had with the community is that there certainly is a need for reporting, and there's a need for identifying best practice, and there's a need for identifying ways of measuring outcome, but there's a need for action right now. I think there will be significant backward steps taken unless there is the political will, the leadership, or some way of making this a priority issue with the federal government as well as the provincial governments.

There is a need to identify how the philosophical framework of In Unison can work: separating income support from disability support services, removing disincentives, and achieving full citizenship. That's the message I'd like to bring here from our work in Nova Scotia over the past couple of days.

The Chair: Thanks very much. Did you find out if there's any water in the pool before you dive off that board?

Mr. Charles Macdonald: It's a deep and very inviting pool, but it's going to take someone to jump.

The Chair: I think everyone is running around measuring the depth of the water in the pool before they dive. I don't know.

Is there any word on whether the infrastructure program has anything in it about disabilities? It's just up to the local municipalities to set it as a priority, right? So you guys are all going to make sure it gets set as a priority at your local levels?

Mr. Charles Macdonald: It's an opportunity to address many accessibility issues. In Nova Scotia, there are fairly old communities that are very inaccessible. There was a main street program that had a dramatic effect on accessibility, but this could extend that. The province has announced a community accessibility program, which will provide grants to community organizations to provide access to their facilities. It's a four-year program, but the impact could be dramatically increased by cost-sharing amongst the federal government and municipalities.

• 1645

Ms. Wendy Lill: Thank you very much. Charlie, I want to thank you for giving an overview of what's going on right now in Nova Scotia and I want to just reinforce some of your thoughts, because as a member of Parliament in Dartmouth, I get a lot of calls from people.

I got one recently from someone who was in fact facing not having a teacher's assistant in the upcoming year, who asked if the federal government couldn't give some money directly to the Halifax school board. I thought, of course not, of course not, but basically what we're hearing—and we're hearing it over and over again, and I'm trumpeting it—is that we need national standards in education.

We need national standards in terms of disability issues, and we are facing now in Nova Scotia a provincial government that has cut the amount of money that persons with disabilities who are in the workforce on some level of social assistance can keep. The amount they are able to keep while they are out in the workforce is now $50. This is just a stunning setback for people who choose to be productive, who want to be out there working, but need to make their way.

I guess the question is how do we safeguard against ideological and financial differences that are going on across these 11 jurisdictions? How do we make sure people aren't just ground down by bad decisions that are being made all the time at different local levels?

So the idea of an office of disability issues is interesting, but I wonder about a national disability act that would have the same kind of heft as the Canada Health Act, which unfortunately is pretty battered right now.

We do live in a country that has many inequities. There are regional inequities and then there are inequities amongst citizens within different regions, and our disabled citizens bear the most brunt of the financial inequities in the different regions. So what is the role of the federal government here? Surely it has to be to provide that infrastructure, whether it's the physical infrastructure or basically the national standards. There has to be the setting of national standards, and I think the federal government has to be a watch guard over those standards.

That's a bit of rant, but I'd like anybody to comment on that. We could start with you, Traci.

Ms. Traci Walters: I'm sorry, were you on the speakers' list?

Ms. Joan Westland: I'll speak to that, but I'd also like to take advantage of securing the microphone to make a few more comments.

I also was not able to participate in the discussions of my colleagues, although I'd certainly echo their recommendations, which, for some of you who have been involved in this area for as many years as some of us have, are not terribly new recommendations. We're just trying to find new ways of articulating them, I think, to see if we can pique some interest.

CCRW, as a national organization promoting employment for people with disabilities, certainly comes across many of the situations, Wendy, that you've mentioned and that others mentioned in terms of the question of disability supports, the issue of this very diverse range of political policies that we see across the country in terms of, on the one hand, promoting employment and, on the other hand, making it almost impossible for people to in fact secure meaningful and substantive kinds of employment. But the question that comes to my mind in the discussions, when I keep hearing all of the reasons why we can't do things.... Every time we come up with recommendations where the first response we get is why we can't do things either because we don't have enough money or because it's not our jurisdiction, and all of these other obstacles that are immediately put out on the table, it makes me wonder if we've ever had a discussion federally and provincially as to whether we even agree on the concepts of equity and equality, and access and inclusion. If we don't agree on those fundamental concepts, then it's no wonder we're not going to be able to address any of the other issues.

• 1650

So perhaps we even have to step back and say, do we even have a consensus or an understanding of what some of these principles really mean, so that we can then start getting rid of some this contradiction and conflict?

I think we got close to some of that discussion a number of years ago when we did have the Status of Disabled Persons Secretariat federally. That secretariat answered directly to a minister, and many of us had very direct access to that minister's office and were able, I think, to put some significant persuasion into place to have some outcomes from that kind of direct communication.

That secretariat has been downsized and downsized and downsized, so that we have an office on disability issues that is buried somewhere within a department. And yet because that office is there, if we do try to generate discussion within other ministries, we are always directed back to that office.

So where on the one hand you may say, yes, it's wonderful to have a secretariat or an office on disability issues to take some leadership, the price you tend to pay is that you're then put into that disability box. And because that office is then given this directive, you run into interdepartmental issues about whether or not I, as Ministry of Industry, should be listening to the secretariat on the status of disabled persons, and how is it that you have the authority to give direction to me on disability issues, and all of the confrontation that spills out from that kind of structure or system.

So as much as I hesitate to say it, we probably need to step back and have some thoughtful discussion as to whether or not we really understand what some of the principles are, whether or not we really understand what the full impact of implementing some of these recommendations would be. Do we have that agreement, to begin with, between federal and provincial?

I don't buy into the discussion that there's not enough money, or we can't do anything because we weren't given enough money. We have too many examples where we have in fact initiated issues around access and support that have just become rote, that were given that exact same argument. Curb cuts, for example—we couldn't possible do them, it would be far too expensive. Well, you won't see a community now that doesn't have curb cuts. Another example is support to students in post-secondary education. We couldn't possibly do it; we don't have enough money. Well, those kinds of things are happening. Whether they're happening to the extent that we wish them to is another discussion, but I think there are lots of examples where once the practice becomes part of our functioning and part of the infrastructure, that whole issue around costs starts to become a little bit of a moot point.

I think what it is, again, is coming to some fundamental agreements of understanding that things have to happen at a community level in terms of infrastructures. Things have to happen at a legislative and policy level. And there are lots and lots of documentation available on how we should go about that, what's going to be most effective and appropriate, that I don't think we have to keep repeating.... It's unfortunate, I see that we do have to keep repeating it, but I hope we don't have to keep redrafting the same “how to's” that have been drafted over the years.

Those are some of the experiences that we've had.

As a final comment on the social union and those discussions, there have been a few consultations initiated very recently, certainly in terms of HALS—and Allen is here—and in terms of trying to identify an effective consultation mechanism.

There is not, as Laurie pointed out, access to the federal-provincial discussions, which I think is a gross oversight and showing some disadvantage in terms of having access to expertise and knowledge that I find very difficult to rationalize.

Those are just a few points from this side of the table. Thank you. I hope I answered some of your questions, Wendy, regarding the secretariat system.

• 1655

The Chair: Cam.

Mr. Cam Crawford: I have just a couple of observations. In the research we've done over the last 10 years or so, there are themes that keep coming up, whether we're talking about income support or disability support or employment support or educational support for people. One of the themes is the issue of equity. Another theme might be issues of access. But always a theme has been the issue of adequacy. If we go back to the days before the CHST, issues of adequacy were a major problem at a time when Canada's fiscal capacity was, in relative terms, fairly robust.

What's happened since then is that we've removed a lot of the fiscal capacity from the provinces that deliver programs that result in outcomes that are less than adequate. So the problem has been exacerbated. And it's no mistake, it's no fluke of chance that at the very time when the CHST is introduced, the provinces don't want to be stuck with that responsibility, so it's downloaded.

In a system that was already rife with discretionary decision-making, lack of clear framework, and lack of clear consistency and guidelines, even provincially, let alone nationally, we've had a further fragmentation of a system. What we're operating with right now around disability supports is almost the complete absence of any coherence whatsoever. There is no framework federally or provincially, and the money is inadequate.

If we could address the need for a clear federal-provincial framework to guide thinking, policy development, and program design, and if the federal government could re-ante up some of the money that was taken out, I think progress can be made. They don't have to satisfy every conceivable need, but they can sweeten the pot to bring the provinces to the table. It will be a long-range process to put in place the ideal system that everyone wants, but certainly one can be devised that's much better than what we have right now.

The Chair: Thanks very much.

Angelo, maybe you can also respond to that in the same light. I would love it if you would expand on the analogy you gave to the transition fund. As we are expecting a homelessness announcement on Friday, there's been a serious attempt to be able to do innovative, creative things with the community.

Mr. Angelo Nikias: Thank you.

We started this discussion today focusing on disability supports. We did that because we have come to the conclusion that unless we focus and unless we set some priorities—and that relates to all of us, community and governments—we cannot make as much progress as we would like to make. The discussion this afternoon around income and other issues indicates once again that there are other things we need to do and that we need to work together to do those things.

I appeal to you today to think about disability supports the way we have been trying to approach this issue today and see if we can take some concrete measures and some concrete steps that can move us forward. Yes, there is a greater need for coordination at the federal level, but perhaps that could be the subject of another hearing of this subcommittee.

We think the measures we have put forward today are integrated. They do require collaboration between the federal and provincial governments and the community, and on that basis we think we can make some progress.

As inadequate as the income support system across the country is, the system of disability supports presents real gaps, serious gaps. My favourite example has to do with Lloydminster. On the west side of Main Street, in Alberta, a blind person can obtain a talking computer with public assistance. On the east side, in Saskatchewan, a blind person can obtain a white cane but not a talking computer. The blind person on the west side of Main Street in Lloydminster cannot have assistance for a white cane, one of the most basic daily living devices for a blind person.

• 1700

This is the type of issue we have in the area of disability supports. When we are looking at Main Street in Lloydminster, there is inequity and contradiction. If you look at some of the provinces east of Quebec, there you don't have anything. You don't have any assistance for either a white cane or a talking computer. These are just examples.

The final point I want to make, which I think Cam touched on, is that we need federal leadership. In the past, when we have experienced federal leadership.... We had, for example, the VRDP. Even though it was not perfect, the VRDP was the backbone of a lot of services right across the country. The essence of the VRDP and the essence of what we need to do again is that the federal government must demonstrate leadership, leadership with financial assistance.

Thank you.

The Chair: Traci.

Ms. Traci Walters: Thank you.

It was very interesting to listen to Charlie. When the community sat here in Ottawa, basically we all came to the same conclusion. However, they were over there in Halifax. So finding out the need is not difficult; it's pretty well the same everywhere.

I think we have a really good opportunity here. It sounds like there might be an election in the fall, or whenever one is called. It might be coming up soon. In the red book three, or whatever it will be, there is a section on disability and it's time for us to strategize on what should be in there.

I just loved Cam's idea that the community is promoting a block funding transfer with principles to the provinces with a fence around it only for disability issues. The provinces still have the ability to identify in their provinces what needs haven't been met. One province might have better technical assistance than others, and what have you.

So there is a need for the money from the federal government, the principles from the federal government, and the transfer to the provinces, which will be working with the communities in their provinces to fill in the gaps of the inequities in their province to bring us all up to some sort of level playing field all across the country. Maybe something like that under disability supports could be in the red book three.

Ms. Wendy Lill: I just want to make a recommendation. We've just heard from Cam that there is still a complete absence of a federal and provincial framework for policy development and program design. We've heard from you that the major advocacy groups on disability issues are not invited to the table on federal-provincial negotiations around disability issues. Correct?

I would have to say that if this subcommittee can do anything, you'd think we could certainly write a very strongly worded letter to the people involved in the Social Union Framework Agreement recommending that they begin to incorporate the groups and the people who know what's going on within their negotiations.

The Chair: Maybe Deborah will fill us in.

Ms. Deborah Tunis: Certainly. In terms of the absence of a concrete framework, the In Unison document does try to set out some initial parameters and principles, as does the Social Union Framework Agreement in terms of what some of the broad principles and objectives are. I think it's true that there's still a point about what governments meant when they signed on to the principles and the Social Union Framework Agreement and what that implementation means.

The FPT working group on benefits and services has had three meetings—one in September, one in March, and there's one coming up on June 13, with basically the representatives around this table—in terms of looking at what the In Unison document meant and what government should be reporting on on that basis. That focus has largely been on this report rather than on the actions. Charlie Macdonald wants to see us all jump off that high-dive diving board. But certainly there is a desire on the part of the FPT working group to work with community representatives on that report, to the extent that governments then decide to take other actions. I think ministers are certainly committed to including the community in those discussions.

• 1705

The Chair: Nancy, and then Laurie and Mary.

Mrs. Nancy Karetak-Lindell: I was very interested in hearing the discussions on a universal type of assistance to people who are disabled. I just spoke with some people in my riding who have never worked; either they're hunters or they've lived on income support. They've not contributed to the Canada Pension Plan and have no way of being assisted. I'm having a very difficult time trying to help them because I just don't know what is out there that they could get help from.

I spoke to a guy who froze his feet because he was trying to save a young child from drowning in the fall, when the water was very cold. He became disabled because they had to cut his feet off. Now he's disabled, he's a hunter, he's never worked, he hasn't put money into the Canada Pension Plan, and welfare is probably his only option today.

Another person was on disability, but when he turned 65 he went on old age security, which was less than half of what he was getting. Now we force him into poverty.

It's just so difficult to tell people that we don't have a safety net that will catch them when they fall through these cracks. I need assistance in finding out how we can deal with this. These are not a few cases in my riding, because of the high unemployment. So I'm very pleased to hear discussions on how we can deal with these people who fall through the cracks.

Thank you.

The Chair: We are anticipating a 5:30 bell for a 5:45 vote. We have three people left on the speakers' list: Mary, Laurie, and Pauline.

I think we would like to get on and have time for the Centennial Flame Research Award before the vote, so if it's okay, if these last three interventions are quick, then we can finish all of the strategizing over the wine—and you're going to all be one glass ahead of the poor parliamentarians who have to go and vote, so you should have it all solved by the time we come back from the vote. That's the challenge.

Mary.

Ms. Mary Reid: I'm sure with the wine we'll be able to solve a lot of things.

I had a couple of comments; I'll reduce them to one in respect of time.

I think what happens often when we're talking about disability-related supports is we tend to get bogged down, and perhaps that's where FPT is right now in feeling this sense of being overwhelmed with the complexities that are involved with it. When you start to look at a framework, what it would look like, who's going to be eligible for what and when, and where they can use it, all those issues come up.

It's just a reminder that I often have to think about and that is that the solutions are likely already there—in fact they are already there. Whether it be from local levels like Monsieur Crête brought up in terms of the Independent Living Resource Centres, or at a federal level through Veterans Affairs and the pieces there where people are being distributed with disability-related supports, the solutions are already working within our communities, and perhaps we need to focus on these a bit more in terms of not getting that sense that we can't go forward. There are solutions out there.

Mr. Laurie Beachell: On the comment about the openness of the process and the involvement of community, while the working groups at the official level do involve community, much of the negotiation of ultimate agreements here is a bilateral government-to-government process, which is a process with no record keeping, no public reporting other than a joint communiqué.

• 1710

If there is an issue debated in the House, I can go to a record and find out who supported it and who didn't support it. If it's debated in the legislature, I can do the same thing. But if it's in a closed room between two governments—all levels of government—I have no idea who supported it and who did not. I have no idea, when trying to create change, whether it's the Government of Alberta that needs more information, the Government of Ontario, or the Government of P.E.I., because there is no public democratic process of openness here in this whole forum.

Disengagement of citizenship is fundamentally occurring by how we negotiate these agreements. Certainly the community recognizes the need for governments to be able to talk to each other frankly and directly behind closed doors at certain times and hammer out things. But there has to be some kind of reporting to the public to know what the hell—and who the hell—decided what. Otherwise, how do you create change within a milieu that is just a dark box in which a decision was made, and you have no idea who had anything to say about it?

That transparency issue, that issue of citizenship engagement in this new milieu of social policy discussions behind closed doors, really disenfranchises the disabled community. Unless we deal with that issue in a substantive way, I really don't think we are talking about partnership; we're talking about once again isolating people with disabilities from decision-making.

The Chair: Pauline.

Ms. Pauline Mantha: Thank you.

There are two opportunities that I think may present themselves. One relates to the round table discussions that occurred last year between the voluntary sector and the public sector.

I'm quite optimistic that those discussions will not only have led to recommendations, but that those recommendations will benefit this sector, including the disabilities community. As was said earlier, I think there is, certainly from a grassroots organization perspective, an urgent need for capacity-building.

Second, I think the national children's agenda also presents an opportunity to demonstrate leadership where children with disabilities are concerned. We hope the agreement to be signed by December will recognize the needs of children with disabilities. We have been told their needs are implicitly included in whatever agreement will be established, but while I would like to be optimistic about that, I have certain reservations about those needs being implicitly included.

The Chair: Next week our subcommittee will be meeting with the Subcommittee on Children and Youth at Risk in a joint meeting to strategize on making sure the issues of children with disabilities will be in whatever deal is made in December. We are hopeful that after next week's meeting we'll be able to actually do something.

I think, as everybody has sort of alluded to, there are many things ongoing, and whether that's a budget process or a platform process, the more places we put this on the agenda.... So as we move into election mode, it is important that it become part of every party's platform. That's the best way so that....

I think one of the toughest things for me is the difficult definition between political and partisan. As Laurie says, in order to be political, in order to get things done, you have to know who's doing what, when, and how. You have to be able to integrate and get going on all of those things. Partisan activities are sometimes different. But it's also extremely important that in resolution-based policy formation and party levels and all of that, there are some real opportunities for activity there. People say, “You passed it at your convention, so where is it?” That's a good thing.

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So there are the two different ways that we move. Strong, vibrant political parties are part of democracy, and it is a counterbalance to the centre.

My favourite Peter Newman quote says that politics in Canada has always been the art of making the necessary possible. Therefore, deciding what's necessary is a political decision, and we all have to be part of that. I think the officials are fantastic in the way they've articulated that it's our job together, in the way this round table is right now. It's the politicians plus the stakeholders who have to decide what's necessary, and then we have these fabulous people in the bureaucracy delivering it. We must see our lives together much more like this round table if we're actually going to be successful on what is ultimately necessary.

I think it's really important in terms of the role of the citizen and this whole new idea that citizen engagement isn't just government sitting there saying, what do you think? It is active citizenship that learns what it is to be effective. We know that some of the groups who know the Social Union Framework Agreement by heart are being effective. You said that you would consult Canadians on their social priorities and that Canadians would get to review outcomes. How is that happening? There doesn't seem to be a secretariat for that. I think that having more of us in a chorus asking where it is will be helpful in getting the job done.

Wendy wished to speak.

Ms. Wendy Lill: I have just a quick comment.

Unfortunately, unlike this round table where we will all see a transcript at the end of the day, we are not seeing the transcripts that come out of the social union negotiations. No matter what party we belong to as parliamentarians, we all have to agree that's a flawed process and not essentially a democratic one. People are not able to have an impact democratically into decision-making if they have no idea who's saying what or what sides are being taken. As a subcommittee, having identified this as a major flaw in the social union talks, we can make that point. We can strongly express our objection to that as a flawed process.

The Chair: Thank you.

I think our job is to get full citizenship, including the transparency, accountability, and best practices, all the things that all of us know have to be there. I think you have the commitment of this subcommittee to see what we can do to make sure that happens.

It's now our privilege to begin the small celebration on the Centennial Flame Research Award. The Centennial Flame Research Award Act was enacted on March 27, 1991, to provide an annual monetary award to a Canadian with a disability to research and produce a report aimed at publicizing the contributions to public life of persons with disabilities. The award is comprised of money from the Centennial Flame. For those of you who don't know, it's from the money that people throw into the fountain out there. That money is collected, and since 1991 it has been dedicated to this award for persons with disabilities. Maybe we need better signage out there. Maybe we'd get more money in there if people knew it was for persons with disabilities. I think that's fantastic.

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[Translation]

It is my pleasure

[English]

the great honour, to announce the 1999 winner, Mr. Darrell Swain, from Carbonear, Newfoundland. We are now going to ask Mr. Swain to make his presentation on Mrs. Marie Elizabeth Anne White, and then we get to give him a cheque.

Mr. G. Darrell Swain (1999 Recipient, Centennial Flame Research Award): Thank you for welcoming me here today. Ladies and gentlemen, Madam Chair, honourable committee members, community leaders and advocates, my name is Darrell Swain. I'm from Carbonear, Newfoundland. I was diagnosed at 14 years old with juvenile rheumatoid arthritis. I've had bilateral total hip replacements, knee replacements, and numerous other surgeries. I'm a former federal public servant.

The subject I have chosen to do my Centennial Flame paper on is Deputy Mayor Marie White of the City of St. John's. I'm just going to read it:

It is a cool spring morning in the most easterly city of Canada. The sun rises from the depths of the ocean, to signal the beginning of a new day. A warm orange glow silhouettes a well known Canadian national historic site. Signal Hill, with Cabot tower perched at the top, is the site of the first transatlantic wireless communication by Marconi. The ever present fog reluctantly gives way and the city of history, five hundred years in the making, gradually comes to life. The hum of office buildings and stirrings of distant traffic slowly overtake the morning silence.

Throughout the city, young families awaken and begin the usual routines of the day. On a quiet cul-de-sac in the west end of St. John's, a different kind of family, in a single-family bungalow, becomes a centre of morning activity. Two young children, a girl and a younger brother, gather around the breakfast table, busily trying to decide what they want. A mother tends to the children's needs as she fusses over their clothing, while encouraging a quick decision for breakfasts. Soon they'll be out the door and off to school. But what makes this home a little different is the fact that the mother is a woman with a disability. She is also the Deputy Mayor of the City of St. John's, a social activist and community leader, an educator, mother and spouse, to keep the list short. Marie White has risen to a position of considerable respect in this region of Canada. She is known as a strong, self-assured woman who has realized her potential. She has become an example of what women with a disability can become, whether by design or by chance, in a nation such as Canada.

Marie Elizabeth Anne Ryan was born on May 1, 1960, to Aidan and Vera Ryan. She has two brothers and grew up in St. John's to what was a fairly normal life. She graduated from Holy Heart of Mary High School in 1977 with honors. She immediately went on to Memorial University of Newfoundland and graduated in 1981 with a Bachelor of Arts in Education. During her time at Memorial University, she enjoyed a student teacher internship in England. In 1982, she took a teaching position in Labrador, a part of Canada well-known for its inhospitable climate. This is how a young teacher was expected to take those first learning steps. Marie readily adds “This is what one had to do if one hoped to get some experience”. She continued to teach in Labrador for several years, until a position became available nearer to home, which it did in 1985. All was smooth sailing for some time and things could not have been much better.

In 1987, Marie awoke to numbness in her hands and feet, which she quickly dismissed as nothing serious. Over the next few weeks the numbness seemed to get worse. She paid a visit to her family physician, hoping for a quick and easy explanation. None was forthcoming! So time moved on and so did Marie. Eventually, she began to have increasing numbness, loss of balance and coordination, and deteriorating motor control. Marie's concern for her medical problems heightened in tandem with her growing physical problems.

She was referred to a specialist and after numerous months and many diagnostic regimes, a diagnosis!—POLYRADICULAR NEUROPATHY! But what was it? Essentially Marie's muscles were degenerating and there was no known treatment for the disease itself, just inadequate treatments for the symptoms. A very alarming outlook for the future, Marie admits absolutely. She had to give up teaching and was rapidly confined to a wheelchair for much of the time. By 1990, Marie had become anorexic and her five foot, eight inch frame was reduced to ninety pounds. She had much difficulty swallowing and breathing. A tracheotomy was performed to help her breathing. The next twenty-four months was a blur and a living nightmare for Marie. She suffered numerous cardiac arrests and was subsequently resuscitated each time. Marie says, “This time was a horrible period for me, but I didn't give up...instead, I found a way to cope and overcome the obstacles put in my way, I had to.” Her husband Jeff had returned to university and was now a medical student. Were it not for Jeff's medical training, she would have died during a cardiac arrest at home. Needless to say, Marie suffered much during this difficult time.

• 1725

Marie says, “You've got to have a good attitude...no matter what, this is probably the key to beating the odds...along with the support of family and friends.” Marie had all of this and in 1992 a turnaround began to materialize. Although much of the damage her muscles and nerves suffered will never reverse itself,...a change for the better was coming about. She began to improve a little at a time and was quickly feeling better, although she still needed a wheelchair. But at least she could live a little again. Doctors are not sure why this improvement was happening, but improving she was.

Marie and Jeff quickly decided to have children while they had a chance. Maybe this improvement was temporary,...maybe it was a window of opportunity. At the same time, Marie became active in the disabled community and rapidly became the top spokesperson. Marie says it's amazing what one can be capable of, when properly motivated. Due to this rising recognition in the community, she was approached by friends to run for St. John's city council. She couldn't believe people would ask her to pursue this, but they did! In 1993, she ran for councillor at large and personally expected very little. She ran for council as a lark and never anticipated the result. She placed four out of five, for councillor at large. “It blew me away on election night. I got a call at home telling me I was now on St. John's city council,...no one was more surprised than me.”

The next day was a whole new world. She had a job to do, and very little idea how to do it. The first few months were a steep learning curve. Marie found that despite her physical limitations, she was determined to do a good job. It was only a matter of representing her electorate as she would want to be represented herself. As well, she found herself in a position to influence decisions and have input on issues related to persons with disabilities. She did this faithfully, both in the private and public domains. People began to look past the wheelchair and realize it was only a part of her that she needed to use, just like legs. Faithfully and diligently, she did her job as city councillor. In 1997, she ran for a second term on St. John's city council, this time for the position of Deputy Mayor, and she won! Marie comments, “I must be doing something right!”

The past two years have come and gone. In this period, Marie has served on numerous city committees, including finance and housing. As well, she is on the committee entrusted with the responsibility of building a $35 million arena for the St. John's Maple Leafs. In each capacity, Marie has represented both her electorate and the disabled community. Moreover, she is now the President of the Newfoundland and Labrador Coalition of Persons with Disabilities. This is an organization with national affiliation and substantial political and public power. She has also become a voice for women in the province, readily accepting her responsibility as defined by the public. Marie has many roles to play and does all with the greatest of confidence. Not to mention the fact that she had two children during this same period.

Marie is a gifted supporter of the rights of the disabled and women. “When people entrust you with such responsibilities, you have no choice but to accept them and fulfill them to the best of your ability, that's all you can do.” Marie has become a high profile person in Newfoundland's political landscape. She may eventually decide to run in Provincial or Federal politics. If she does, she will bring a professionalism and respect she has so confidently earned in the past several years.

Marie is a great Canadian and is a profound believer in equality of all people, removal of barriers to participation and attaining the principles of human security. Everybody is deserving of gainful employment, housing, education, citizenship and access to social programs to protect the unfortunate. Moreover, everybody is entitled to feel safe in a country such as ours. We are a world leader and we have to lead by example. When others follow our example, it is the sincerest form of flattery. Finally, physical and attitudinal barriers can only be broken down through much work. But it is a worthy goal.

• 1730

Marie has recently suffered a minor setback. She fell at home some six weeks ago and suffered a broken hip, no doubt brought on by years of improper nutrition, aging and inactivity. I visited Marie at home on May 27, where she is recovering from hip surgery. A metal alloy plate had to be inserted to stabilize her hip. Despite this, she is upbeat and looking forward to a speedy return to the workplace, as she continues to work from home. She now alternates her days between a wheelchair and a walker. Just before her recent accident, she was walking with the aid of a cane only, most of the time.

Voices: Hear, hear!

Mr. Darrell Swain: I wish to thank the committee and members for selecting me for the 1999 Centennial Flame Research Award, and I hope you enjoyed my topic. Maybe some time you'll get to meet Marie White.

The Chair: Thank you very much, Darrell, and thanks to all the communities that have come here to inform us and celebrate with you. As you tell us this story, I think all of us, as parliamentarians and officials, know that in this country it is usually only with personal stories that we are able to persuade people of all our values of fairness and dignity.

It is so wonderful, the story you've brought to us today. I thank all the other members of the disability community today for bringing their stories and their experiences. Stories like Darrell has brought us and stories like Lloydminster actually allow us to be as persuasive as we can, to actually achieve full citizenship for all Canadians. Thank you very much. We have your envelope.

We'll go shortly to vote, but we will have a little drink à la santé, to Darrell's win, and to all of us being here together again. Next year we'll have even a better report card.

Meeting adjourned.