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37th PARLIAMENT, 1st SESSION

Sub-Committee on the Status of Persons with Disabilities of the Standing Committee on Human Resources Development and the Status of Persons with Disabilities

EVIDENCE

CONTENTS

Tuesday, May 21, 2002

0935

The Chair (Ms. Carolyn Bennett (St. Paul's, Lib.))

0940

Mr. Cam Crawford (President, Roeher Institute)

The Chair

Mr. Cam Crawford

The Chair

Mr. Paul Crête (Kamouraska--Rivière-du-Loup--Témiscouata--Les Basques, BQ)

Ms. Alison Schmidt (Individual Presentation)

Mr. Gerard Yetman (Director, National Programs, Canadian AIDS Society; and Representative, Canadian Working Group on HIV and Rehabilitation)

Ms. Peggy Proctor (Individual Presentation)

Ms. Stephanie Nixon (Representative, Canadian Working Group on HIV and Rehabilitation)

Ms. Elisse Zack (Representative, Canadian Working Group on HIV and Rehabilitation)

Ms. Francine Knoops (Director, Professional Affairs, Canadian Psychiatric Association)

0945

Mr. William P. Ashdown (Vice-President, Mood Disorders Society of Canada)

Mr. Bob Baldwin (National Director, Social and Economic Policy, Canadian Labour Congress)

Mr. Spencer

Mr. David Walker (Individual Presentation)

Mr. George Cameron (Individual Presentation)

Ms. Sherri Torjman (Vice-President, Caledon Institute of Social Policy)

Dr. Ashok Muzumdar (President, Canadian Association of Physicians with Disabilities)

Mr. Harry Beatty (Director of Policy and Research, ARCH: A Legal Resource Centre for Persons with Disabilities)

0950

Ms. Tina Head (Senior Counsel, Legal Services, Office of the Commissioner of Review Tribunals Canada Pension Plan/Old Age Security)

Mr. G. Peter Smith (Commissioner, Review Tribunals Canada Pension Plan/Old Age Security)

Mr. François Bélisle (Chief Executive Officer, Canadian Paraplegic Association)

Mr. Neil Pierce (Chief Executive Officer, Alberta Division, Canadian Paraplegic Association)

0955

Ms. Sue Lott (Individual Presentation)

Ms. Susan Williams (Director General, Disability Benefits and Appeals, Department of Human Resources Development)

Ms. Deanna Groetzinger (Multiple Sclerosis Society of Canada)

Ms. Wendy Steinberg (Policy Analyst, Canadian Mental Health Association)

Ms. Linda Simpson (Representative, Canadian Association of Rehabilitation Professionals)

Mr. Vincent Boyce (Canadian Injured Workers Alliance)

1000

Mr. Dave MacKenzie (Canadian Injured Workers Alliance)

Mr. Wolfgang Zimmerman (Representative, National Institute of Disability Management and Research)

1005

The Chair

Ms. Sherri Torjman

1010

1015

1020

1025

1030

1035

1040

The Chair

Mr. David Walker

1045

The Chair

Mr. David Walker

The Chair

Mr. David Walker

The Chair

Mr. Harry Beatty

Mr. Bob Baldwin

1050

The Chair

1055

Mr. Bob Baldwin

Ms. Sherri Torjman

The Chair

Mr. Harry Beatty

1100

The Chair

Mr. Paul Crête

Ms. Sherri Torjman

1105

The Chair

Mr. Cam Crawford

The Chair

Dr. Ashok Muzumdar

1110

The Chair

Dr. Ashok Muzumdar

The Chair

Dr. Ashok Muzumdar

The Chair

Dr. Ashok Muzumdar

The Chair

Mr. Solberg

The Chair

Ms. Francine Knoops

1115

The Chair

Ms. Sue Lott

The Chair

Mr. Wolfgang Zimmerman

1120

The Chair

Mr. George Cameron

The Chair

Ms. Susan Williams

The Chair

Ms. Sherri Torjman

Ms. Susan Williams

The Chair

Nancy Lawand (Director, Canada Pension Plan Program Policy, Department of Human Resources Development)

The Chair

Ms. Nancy Lawand

The Chair

Ms. Susan Williams

1125

The Chair

1130

Ms. Deanna Groetzinger

The Chair

Mr. Vincent Boyce

1135

The Chair

Mr. Vincent Boyce

The Chair

Mr. Vincent Boyce

The Chair

Mr. Vincent Boyce

The Chair

Mr. Vincent Boyce

The Chair

Ms. Peggy Proctor

The Chair

Mr. Monte Solberg

1140

Ms. Nancy Lawand

Mr. Monte Solberg

Ms. Susan Williams

Mr. Peter Smith

Mr. Monte Solberg

Mr. Peter Smith

1145

The Chair

Mr. Gerard Yetman

1150

The Chair

Ms. Alison Schmidt

The Chair

Ms. Alison Schmidt

The Chair

Mr. Neil Pierce

1155

The Chair

Mr. William Ashdown

The Chair

Ms. Wendy Steinberg

1200

The Chair

Ms. Wendy Steinberg

Mr. Dave MacKenzie

The Chair

Mr. Dave MacKenzie

1205

The Chair

Mr. Dave MacKenzie

The Chair

Mr. Cam Crawford

1210

The Chair

Mr. Bill Young (Committee Researcher)

The Chair

1215

Mr. Laurie Beachell (National Coordinator, Council of Canadians with Disabilities)

The Chair

Ms. Marg Ruttan (Recipient, Centennial Flame Research Award)

1255

1300

The Chair

1305

Ms. Stephanie Nixon

The Chair

1310

Mr. Laurie Beachell

1315

The Chair

Mr. Laurie Beachell

The Chair

Ms. Donna Klaiman

1320

The Chair

Ms. Peggy Proctor

1400

The Chair

Mr. Cam Crawford

1410

1415

Ms. Wendy Lill (Dartmouth, NDP)

Mr. Laurie Beachell

Ms. Peggy Proctor

1420

The Chair

CANADA

Sub-Committee on the Status of Persons with Disabilities of the Standing Committee on Human Resources Development and the Status of Persons with Disabilities

NUMBER 023

1st SESSION

37th PARLIAMENT

EVIDENCE

Tuesday, May 21, 2002

[Recorded by Electronic Apparatus]

¿ (0935)

[English]

The Chair (Ms. Carolyn Bennett (St. Paul's, Lib.)): We will start. We have all sorts of fun and games this morning, including the new members of Parliament being sworn in and lots of circus happenings all over the place. Members of Parliament will be coming and going in true parliamentary fashion. We're just thrilled that you're all here.

The tiny, perfect subcommittee is always delighted to host these reunions of anybody in the disability community to come together. We think today is a particularly exciting opportunity, that after 20 years or so we might actually start thinking outside the box: If we were going to build a Canadian pension plan, what would it look like? Would it look like the one we have right now? And how would we dream about doing the best thing possible for Canadians?

As you know, as a lowly family physician, I've filled out these forms for 25 years and didn't like it. So I always come to these exercises being not particularly objective. All of those levels of appeal were daunting for people. I have some little things where you can persuade me differently or we can work together on what might be an opportunity.

As you know, we have persuaded the House of Commons--we think--to embark on a new thing for the House of Commons. It is this scoping exercise. We will be able to take what you teach us today out to Canadians in an on-line conversation about what's working and not working in disabilities for the people who are receiving it, the people who were turned down, the doctors, the insurance companies, and all the various stakeholders. We hope what we learn today will be part of making sure we're asking the right questions when we go out to Canadians about this extraordinarily important government program.

I am thrilled that all of you have come. As you know, the Tuesday after a long weekend wasn't exactly the smartest thing we could have done, but I am hugely grateful that all of you are here. As you understand, in the parliamentary schedule we have very little time, and we need to make sure this is done.

In terms of timing, we have some key people who aren't able to be here this afternoon, and so depending on how it goes this morning, there is some small prayer that we could be done by two o'clock, before we all go to question period. If not, we would reassemble at 3:30 over in Centre Block.

We will see how we think we're going. We don't want to abuse you today, but we do want to take full advantage of the fact that you're all here in one place at one time.

We should begin by explaining who's here. I think probably each one of you could do the introduction of the person next to you, but we will not risk that. We'll let everybody introduce themselves, and we'll start with Cam Crawford.

¿ (0940)

Mr. Cam Crawford (President, Roeher Institute): I'm Cam Crawford from the Roeher Institute.

The Chair: Since I have spoken so shortly, perhaps everybody could give 15 seconds of their one big beef or one big wonderful thing about the CPP disability.

Mr. Cam Crawford: The wonderful things are hard to list. The problems I can think of are the difficulty people have in qualifying for it and the princely sums that people will actually get upon retirement--$500, $600 a month in many cases, which is not a lot to live on.

[Translation]

The Chair: Good morning, Mr. Crête.

Mr. Paul Crête (Kamouraska--Rivière-du-Loup--Témiscouata--Les Basques, BQ): Good morning, Madam. My name is Paul Crête and I am the member for Kamouraska--Rivière-du-Loup--Témiscouata--Les Basques.

Perhaps the most important contribution I could make is to speak about the way the Quebec Pension Board deals with disabled people. In the past, its practices have been somewhat different from those of the Canada Pension Plan. Perhaps there are some lessons to learn.

[English]

Ms. Alison Schmidt (Individual Presentation): I'm Alison Schmidt. I run the disability claims advocacy clinic in Regina, Saskatchewan, and I help people who are going through the appeal processes.

Mr. Gerard Yetman (Director, National Programs, Canadian AIDS Society; and Representative, Canadian Working Group on HIV and Rehabilitation): I'm Gerard Yetman. I'm the director of national programs for the Canadian AIDS Society. There are many problems we see with the CPP issue. The major one is its inability to work with a cyclical disease.

Ms. Peggy Proctor (Individual Presentation): My name is Peggy Proctor, and I'm from Saskatoon, Saskatchewan. I recently coordinated a national cross-disability project where a number of disability groups came together to talk about common issues. Certainly a recurring theme was difficulties with the CPP disability pension, among other issues. That's the perspective I bring.

Ms. Stephanie Nixon (Representative, Canadian Working Group on HIV and Rehabilitation): Good morning. My name is Stephanie Nixon. I'm one of the co-chairs of the Canadian Working Group on HIV and Rehabilitation, the group that organized the project that Peggy ran for us. We'll look forward to discussing some of the issues that emerged throughout the morning.

Ms. Elisse Zack (Representative, Canadian Working Group on HIV and Rehabilitation): My name is Elisse Zack. I'm the executive director for the Canadian Working Group on HIV and Rehabilitation.

One of the key issues that we identified or confirmed through the project that Peggy did was about cyclical or episodic disability, and how do you get onto disability and then get well again, and get off disability and then on again if your life is unpredictable in that way.

The other one was about the understanding of the assessors who do the assessment of the different kinds of disability that people with HIV live with, and how to do appropriate assessments when you don't really understand the illness.

Ms. Francine Knoops (Director, Professional Affairs, Canadian Psychiatric Association): Hello. My name is Francine Knoops, and I'm representing the Canadian Psychiatric Association. We have a disability insurance task force that has looked at issues of concern to physicians with regard to private insurance and similarly have begun to look at issues with regard to CPP. As you noted, a lot of that is driven by the difficulties that physicians, especially psychiatrists, encounter with their patients who they feel have to be dealt with differently.

So there are a range of issues, which maybe I'll bring up later in our discussions, with regard to confidentiality, the appropriateness of diagnosis, and the disconnect between functionality and diagnosis--those kinds of issues.

¿ (0945)

Mr. William P. Ashdown (Vice-President, Mood Disorders Society of Canada): Good morning. I'm Bill Ashdown. I'm with the Mood Disorders Society of Canada. We have a whole range of questions and concerns relating to CPP in particular and the coverage on a variety of insurance issues. I'm here to give the benefit, if I can, of my experience in terms of being in the field at the sharp end of things, if you will. I certainly want to listen to and hear what others have to say and see if their experiences mirror the experiences of our people. Thanks.

Mr. Bob Baldwin (National Director, Social and Economic Policy, Canadian Labour Congress): My name is Bob Baldwin. I'm the director of social and economic policy at the Canadian Labour Congress and a former long-time member of the Canada Pension Plan Advisory Board, when it still existed.

On the strength side, the one thing I would point to is the universal participation of all members of the paid labour force in the CPP, which is a tremendously important characteristic vis-à-vis all its benefits, but as a way of providing disability insurance, the number one problem is the exclusion of significant parts of the disabled population from access to CPP benefits. People have already noted the problems faced by people with short term and intermittent disabilities, which is a big problem, and of course the other major group that is excluded are people whose disability has prevented them from ever entering the paid labour force in the first place.

Mr. Larry Spencer (Regina—Lumsden—Lake Centre, Canadian Alliance) I'm Larry Spencer, a member of Parliament from Regina. We sat through the study on the disability tax, and we found that there's quite a discrepancy between what we see as people who should qualify for disability and those who do not. I've been concerned because of this that we have not in fact narrowed the scope through different applications and forms, etc., to make it narrower in scope than what the legislation originally intended disability benefits to be. That would be my concern.

Mr. David Walker (Individual Presentation): I'm David Walker. I was involved with the Canada Pension Plan review process six years ago, leading the national consultations in which some of the changes were made. I'm interested in the impacts that others see on it, and I would like to perhaps contribute anything I can from a historical perspective. I don't have any particular complaints to put on the table at this time. Thank you.

Mr. George Cameron (Individual Presentation): Hello. My name is George Cameron. I publish a magazine called Canadian Disability. For several years I've also represented people with disabilities before tribunals and boards.

The one concern I have has to do with the fact that new categories of illness have arisen in our society in the last 20 years. These new, emerging illnesses are often called chronic fatigue syndrome or fibromyalgia. I'd like to put forward that some way of dealing with these illnesses should be addressed. They are difficult to diagnose and to provide a prognosis for, and that leads to real complications in the appeal process.

Thank you very much.

Ms. Sherri Torjman (Vice-President, Caledon Institute of Social Policy): Hi. I'm Sherri Torjman, and I'm with the Caledon Institute of Social Policy.

I agree with Bob Baldwin. I think the major strength of this program is the fact that it affords universal coverage to all Canadians who are working. I think many Canadians are actually not aware of that very important coverage of the program. The problem, of course, has been the eligibility criteria, the inconsistent application, and the fact that many people are being left out.

Dr. Ashok Muzumdar (President, Canadian Association of Physicians with Disabilities): I am Ashok Muzumdar. I am here on behalf of the Canadian Association of Physicians with Disabilities. We are a newly formed organization.

Madam Chair, I want to mention one thing. There is another class of physicians that is several notches below the so-called lowly family physician, which is the specialist. Unfortunately, I fall into that category.

We have no specific issues at this time, but one of our mandates is to work toward improving the quality of life for all disabled persons, not just physicians. As we are brand new, just about a year and a half old, we ourselves are just searching, and I'm here to listen and learn.

Thank you for inviting me.

Mr. Harry Beatty (Director of Policy and Research, ARCH: A Legal Resource Centre for Persons with Disabilities): I'm Harry Beatty of ARCH, which is a legal clinic serving people with disabilities. We are based in Toronto. We are part of the Ontario community legal clinic system, which has formed a Canada Pension Plan disability working group consisting of people who are regularly doing Canada Pension Plan advocacy.

I think the issue we'd focus on in advising individuals is the so-called “integration” of benefits with other systems. “Confusion” might be a better term.

Just to give one example in terms of rehabilitation, which was mentioned by other speakers, if an individual has to be concerned about eligibility for two or three different programs and has to go to two or three different programs for approval of a rehabilitation approach, that can be the kind of obstacle that makes people give up. It may be worth looking at things such as uniform rehabilitation policies and common earnings exemptions. There are many other examples of where one program is saying do one thing and another program is saying do something else, or where disability means one thing here and something else there. An awful lot of clients are involved with two or more programs.

¿ (0950)

Ms. Tina Head (Senior Counsel, Legal Services, Office of the Commissioner of Review Tribunals Canada Pension Plan/Old Age Security): Good morning. My name is Tina Head. I'm the senior counsel with the Office of the Commissioner of Review Tribunals. We are the first of the two external levels of appeal in the Canada Pension system. Not surprisingly, about 95% of the appeals that come before our tribunals involve Canada Pension disability benefits.

As an institutional player, we are here this morning, the commissioner and I, to do some very active listening, but we, too, have some issues we'd like to share with you. But I will leave those to the commissioner, who's sitting right beside me.

Mr. G. Peter Smith (Commissioner, Review Tribunals Canada Pension Plan/Old Age Security): Thank you, Tina.

I'm Peter Smith, commissioner of CPP/OAS review tribunals. I don't know how they came up with such a long moniker.

As Tina says, we are primarily here to practise what we preach. We try to provide professional development opportunities to our tribunal members, all 300-and-some of them across the country, in active listening, so it's important that we do that ourselves.

But I would like to mention that in our appearance before the subcommittee two weeks ago or so, we did undertake by the end of the summer to present the subcommittee with some policy, procedure, and program reform suggestions, which is not always the role of an administrative tribunal. As you know, we are a quasi-judicial body or administrative tribunal. But given that the subcommittee is doing its review and that in the fall there will be a statutory review of the Canada Pension Plan beginning at the federal level, we think it appropriate for us to try to present some ideas. So we're here to steal some good ideas as well.

Mr. François Bélisle (Chief Executive Officer, Canadian Paraplegic Association): Good morning. My name is François Bélisle, and I'm the CEO of the national office of the Canadian Paraplegic Association here in Ottawa.

Most of the key problems have been identified, but to sum up eligibility criteria, which in some cases have actually proved to be disincentives for people with disabilities to return to work, is I think something that needs to be looked into. I think the issue of coordination of benefits was also mentioned and the level of benefits. These are the kinds of issues I'm looking forward to hearing a discussion about.

Mr. Neil Pierce (Chief Executive Officer, Alberta Division, Canadian Paraplegic Association): Good morning. My name is Neil Pierce. I'm the executive director of the Canadian Paraplegic Association in Alberta, and I'm here to complement François' comments by adding to the eligibility problems around the Canada Pension Plan.

In the field, my counsellors are telling me there is too narrow an interpretation of severe and prolonged disability. A lot of people with spinal cord injuries in Canada who are in complete spinal cord injuries are often turned down for eligibility.

Furthermore, we believe the definition of disability adopts a medical model and provides too narrow a focus. There should be more emphasis on the use of vocational experts to assess the impact of disability on employability and to furthermore strengthen the vocational rehab program, which actually is a good program. As with every good program, there's lots of room for improvements.

¿ (0955)

Ms. Sue Lott (Individual Presentation): Good morning. My name is Sue Lott. I'm actually a lawyer in the city of Ottawa, and I also do research. I'm here in the capacity of somebody who did some research in the last little while for the Office of the Commissioner of Review Tribunals.

It had to do with the issue of the integration of CPP with private insurance, the reasons for that and some of the issues raised by that. But the overall problem is one of overall level of benefits available to people, their inability to understand how the systems--both government and private--integrate and actually reduce their availability of benefits overall. That's the fundamental problem underlying this research I did. Thanks.

Ms. Susan Williams (Director General, Disability Benefits and Appeals, Department of Human Resources Development): Good morning. My name is Susan Williams, and I am the DG of Canada Pension Plan disability, responsible for administration of the disability benefits part of CPP. I'm here this morning to listen with considerable interest to the discussion. We're very keen to make the program more client-focused and more client-friendly, so we welcome the input.

Ms. Deanna Groetzinger (Multiple Sclerosis Society of Canada): I'm Deanna Groetzinger. I'm with the Multiple Sclerosis Society of Canada.

In terms of the strengths of the system, about 10,000 people with MS currently receive CPP disability benefits, so it is a very important source of income support for people with MS. But we're also aware of difficulties of a number of people with MS in qualifying for CPP disability. MS is a disease that has vast fluctuations from time to time, although generally speaking it is a progressive illness over time. We're here to observe, listen, and perhaps bring forward some suggestions for change.

Ms. Wendy Steinberg (Policy Analyst, Canadian Mental Health Association): I'm Wendy Steinberg, representing the Canadian Mental Health Association. As we've heard from several people around the table already, the episodic and unpredictable nature of serious mental illness certainly puts us at a disadvantage when applying for CPP disability.

The other thing of concern to our group is the definition of disability and how it's equated with being permanently unemployable. The reality is that most people with serious mental illness are capable of working, usually to some degree, within a flexible, supportive work environment. This all-or-nothing approach, putting people in black or white terms, really doesn't reflect the reality of the people we represent. I'm hoping to be able to dialogue around these issues more today.

Ms. Linda Simpson (Representative, Canadian Association of Rehabilitation Professionals): My name is Linda Simpson, and I'm representing the Canadian Association of Rehab Professionals. I see some of our members here as well. What I'm really here to do today is to listen to some of the views and some of the issues with regard to the service delivery model.

Mrs. Donna Klaiman (Director of Professional Development and Education, Canadian Association of Occupational Therapists): My name is Donna Klaiman, and I'm with the Canadian Association of Occupational Therapists.

Today we have two main issues we'd like to bring to the table. One is very similar to what I hear, and that is redefining the criteria for CPP disability benefits. Right now we see the eligibility criteria for benefits defined as severe or prolonged disablement, with permanent removal from the labour force and gainful employment. We're suggesting that perhaps it be redefined as a permanent major loss in long-term earning potential incurred through disablement. That way individuals in question could re-enter the labour force episodically during well periods, with the long-term income stream from employment having been significantly and permanently reduced.

The second thing is we would like to see some incentives to increase recipients' longer stream of CPP income for individuals with capacity for unique work experiences. Thank you.

Mr. Vincent Boyce (Canadian Injured Workers Alliance): Good morning. My name is Vincent Boyce. I'm with the Canadian Injured Workers Alliance. I'd like to first apologize for being tardy, but we were in the wrong building. Our information indicated 180, room 604. However, we were there at nine o'clock and eventually learned that it was here. So please forgive us.

I'm also with the Injured Workers Association of Manitoba; I'm relatively new with the Canadian Injured Workers Alliance. What we see in our province right now is people being shuffled between the Workers' Compensation Board and the CPP disability fund. I'm here, hopefully, so that I can learn something from this round table to take back to our province and to perhaps try to help the disabled worker in our province and elsewhere, as we represent across Canada as well. So hopefully I can take something back with me.

À (1000)

Mr. Dave MacKenzie (Canadian Injured Workers Alliance): Likewise, with Vince, we were in the wrong building. My name is Dave MacKenzie, and I'm from Nova Scotia. I'm the Nova Scotia representative for the Canadian Injured Workers Alliance.

We've had continuous, ongoing battles with Canada Pension Plan disability. It never seems to amuse me when I read some of the letters. I have one here in front of me of a case where a person applied for Canada Pension Plan disability in October 1997, only to go through different appeals, and his last appeal was on October 18, 2000. At that time, they told him that his next appeal coming up would be May 29.

I was giving a training session in Niagara Falls and I got a call from him the other day telling me that he and I are not going to this appeal on May 29, that they've changed their decision of October 18, 2000, and allowed him his Canada Pension Plan disability.

The letter was written on May 8 and he didn't receive it until May 12, or sometime around that. Then when he got it he had about 10 days in which to apply back to the Canada Pension Plan disability to be eligible. But they have two and a half years to fool around with somebody's life.

I don't know. Perhaps some of the people here don't know much about life in general in terms of trying to survive on Canada Pension Plan disability. When two people have to try to survive on $700 a month, it's pretty darn tough.

Therefore, my suggestion is that the government pass a law that the insurance companies and the WCB have no right of clawback on Canada Pension Plan disability. Where you have an insurance plan, where you have WCB, if you obtain a pension from them, they turn around and they deduct half of your Canada Pension Plan disability from your worker's compensation.

I don't think--and this is in accord with a court case in Ontario that I have a copy of here--that this is the meaning of Canada Pension Plan disability. Until such time that the government puts this law down to stop these people from depriving people of a livelihood, then we have to look at something else.

I hope I can learn something from being here today. Thank you.

Mr. Wolfgang Zimmerman (Representative, National Institute of Disability Management and Research): Thank you very much. I certainly appreciate the opportunity of being able to be here, and my apologies for being late.

I have a couple of quick comments. One is that I would strongly suggest, especially with the experiences we're currently seeing in British Columbia, that we work hard at strengthening our national system. In many ways, I think CPP is the only national system we have supporting persons with disabilities, and we are seeing that under significant attack.

The second observation I'd like to make is that I don't know that CPP can operate in isolation. I think we really need to look at a much more harmonized approach across all approaches on the disability front. We need an approach that incorporates employment questions, self-sustainability, and empowerment for people with disabilities, and doesn't look at the benefits side in isolation. I think that would be wrong, in my view.

My third comment might be that you may want to consider looking at the system working within a much more proactive approach. By the time CPP gets involved, a whole lot of people have lost their attachment to their pre-disability employer.

One of the things we are seeing out of the European experience and the U.S. experience is that even in times of extremely high economic activity, we're not seeing a change in the unemployment rate for persons with disabilities. So I think we need to really look at a paradigm shift in how we deal with this. CPP disability, in my view, can't operate in isolation.

So I would strongly suggest that you may want to consider looking at strengthening the private sector partnerships in terms of focusing on a return to work and looking at a reduction of those who end up going onto the system in the first place. I would suggest that you consider whatever may be necessary in order to do that, whether it's looking at additional skills or whether it is striking at different agreements, thinking outside the box, because I don't know that the status quo Canada Pension disability is sustainable or acceptable.

Thank you.

À (1005)

The Chair: Thanks very much.

We welcome also Reed Elley, member of Parliament for the Canadian Alliance, who is coming.

As we were explaining, the bells will ring. Everything will keep happening, but we're going to stay here and do our work even though the new members of Parliament are being sworn in. This is the cult of the House, which at the moment we're ignoring.

It is now my huge pleasure to introduce Sherri Torjman. I think all of us who care about the issues of disability feel truly privileged that we have somebody as smart and hard-working and who is always able to turn things around and look at them in a new way as Sherri Torjman. She devotes a great deal of her time at the Caledon Institute to studying the issues of persons with disabilities in Canada. She has been involved since Obstacles and continues to produce thoughtful papers that make us all think. Recently she has produced a paper on CPP for the OCRT.

This morning we've asked her to come to give us a tiny history lesson, but mainly the current policy administrative issues and her view of the options for reform.

Thanks very much, Sherri.

Ms. Sherri Torjman: Thank you, Madam Chair. I very much appreciate that introduction and being asked to open up what's a very, very important discussion, not only for the disability community, but I think also for the entire country. On behalf of all of us, thank you for the opportunity to participate in this.

If this round table is any illustration, no doubt you will be hearing from many Canadians from many walks of life. As members of Parliament, I know you have experienced many problems with the Canada Pension Plan disability benefit yourselves. You probably spend a great deal of your time resolving many of the issues of constituents, so you know many of the concerns already. But I think there are additional issues you will hear addressed--from consumers, for example, who have already stated some of their major problems with respect both to the program and to the appeals procedures. I will be going over some of these in a minute. You will be hearing from the service providers, who are also concerned about referrals and how they fit into the system, and the pressures and the burdens the system creates for them. You'll be hearing, I assume, from the private insurance sector, because the interface between that sector and the Canada Pension Plan was certainly raised as a major concern. You'll be hearing as well from people concerned about the financing and the auditing of this plan.

Before I move into this brief description and some of the issues, I want to pick up on that note for one minute. In the past few years we've seen many efforts undertaken at reform in the country to improve several of our programs. I think many stakeholders have come to these discussions with bona fide concerns. They've come in good faith. They've put many, many issues on the table about the weaknesses of the program, in the hope that at the end of the day there would be a better program and better results for all Canadians. In many cases, this has not been the case at the end of the day.

Putting some of the issues on the table has been used inadvertently as a means to either cut certain programs or to withdraw them entirely. I have to say, while I have great expectations and am very appreciative of the fact that there will be this review, I'm also somewhat concerned about the fact that something might come out of the process at the end of the day that does not ensure Canadians are better off. Fiscal responsibility or the fiscal lens is absolutely crucial in anything we do. But it is only one lens. The human lens is extremely important. Personally, I go into a review with that lens. I would hope we keep it in mind as a bottom line, in terms of what we would like to see coming out of this review and these discussions.

Before going into any of the specific issues and concerns we've raised, I think it's important to look at some of the strengths. You did ask about this. It's very important that we ask about this, and we do review some of the strengths and know what they are. In any reform, we certainly would want to go back and look at and compare what we are proposing for the current system and make sure the strengths currently provided are at least protected or are in some way embedded in a reformed system.

I'm sure many of you know the history of the Canada Pension Plan in general. It was not an easy piece of legislation to put through. Many of you have studied, and are continuing to do studies of, the Canada Pension Plan. It was the result of long and hard negotiations and debate.

Bob, you would know this yourself, in terms of some of the work you've done.

It was held to be a political miracle once it was in place. It's really important to keep this context in mind, because the members of Parliament fought very hard for these protections afforded through the plan.

So what protections do the Canada Pension Plan afford? There are many of them. We mentioned a very important one at the beginning--the universal coverage of all workers. Now that, in itself, is limited, in the sense that we're talking about workers. But a very important protection of this Canada Pension Plan is that it is open to people who are self-employed, unlike employment insurance, for example, and other major social insurance, where the self-employed cannot contribute. It's portable across the country, which means you can work anywhere and you can have the protection when you need it wherever you live.

À (1010)

It's equitable across the country. You get the same benefit regardless of where you live. It is indexed to inflation, which you can't say for many of the other benefits. It has dropout provisions. So for periods of time during which you may have some difficulty, you can drop out of those periods from the calculation. There are child-rearing provisions as well--a very, very significant protection. And the Canada Pension Plan does provide disability protection, as you know. That's why we're here today.

It is really important to recognize this, because any Canadian who makes the required contributions and who qualifies on the basis of definition is eligible. If you look at some of the other plans, especially private plans, it is not that easy to get in. If you have pre-existing conditions, or if you have any genetic condition in your family, you may not qualify. The Canada Pension Plan doesn't ask this. So it's a very important protection that I would hope we keep in mind.

In terms of how the benefits work, the Canada Pension Plan disability benefit includes two components. One is a flat rate component and the other is a variable component. The flat rate component is important because it is intended to reflect the fact that anybody with a severe and prolonged disability likely incurs additional costs associated with that disability. So some protection is built in. It's not a big amount. The flat rate in 2002 was $364 a month. It's not a big amount, but it's an important amount. There is a variable amount worth 75% of what you would have earned for your retirement benefit. The maximum for that is $592 a month. So this year the maximum disability benefit is $956 a month, for a total of $11,473.

But I have to say, even though these are the maximum amounts, they are not the average amounts. Most people actually receive less than this, because they're not earning at the maximum level. Using the 2000 figures, the most recent figures I have--although the department may have more recent figures--the average benefit is $737 a month for men and $625 a month for women. So the actual amounts people are receiving are quite a bit less than the amounts for which they are eligible.

How do you qualify for the disability benefit? There are two major eligibility criteria, based on your years of contribution and definition. You have to contribute in four out of six years in order to qualify for the disability benefit, and you must qualify on the basis of the definition, meaning you must have a disability that is both severe and prolonged. The definition of severe is that you are unable to pursue, regularly, any substantially gainful occupation. The prolonged criterion means you have a condition that will continue over, or is expected to continue over, an extended period of time, generally interpreted to be at least a year. These are two major criteria. But they have given rise to some real difficulties around the program. I'd like to come back to this in a minute.

Because of the fact that there are so many complexities in defining eligibility, there is a review process built into the system. You've heard about that this morning. We have representatives here from that review process. Anybody whose benefit has been refused can request a review within 90 days. They can request a reconsideration. That's basically inside the program, although their case would be reviewed by somebody who had not been involved in the initial adjudication. But after that point, if they're still not satisfied with the review, they can take the question to another level, called the level 82 or review tribunals procedures. If they're still not satisfied with the decision, there is a third level of review called the Pension Appeals Board. The decisions of the Pension Appeals Board are generally considered to be final decisions, although its decisions can in fact be subject to review by the Federal Court. There is an important decision I would like to talk about with respect to the Federal Court. I will be raising this in just a minute.

We should point out that there is an analogous Quebec Pension Plan. The two operate in somewhat the same way. The levels of benefit are precisely the same, but there are some very important differences.

À (1015)

There are some differences with respect to the initial adjudication. Throughout the history of its plan, Quebec has always made special provision for the fact that people between the ages of 60 and 64, who have a disability, will likely not have an easy time finding employment again if they've been laid off or when they're looking for other work. So there is some recognition for older workers in particular; the plan can be made a bit more lenient for people in that age range. I think it's a very important recognition on their part.

The other aspect of the Quebec Pension Plan that I think is very important to bear in mind--and somebody made reference to this when we were going around the table--is the fact that the programs are far more integrated in that jurisdiction. So there is a provincially run social assistance program, a provincially run workers' compensation program, and a provincially run Quebec Pension Plan. These work effectively together, which means at the end of the day most people are not left out. They don't fall between the cracks, as we experience in other parts of the country, where you have provincial social assistance, workers' compensation, and a national disability program. This creates problems. There are some important lessons from that jurisdiction.

With respect to the amount paid out for disability benefits in the year 2000, $2.5 billion dollars were paid out in disability benefits from the Canada Pension Plan. That was 13% of total payout from the Canada Pension Plan benefit. That's down from 17% in 1994. It went down to 13% in the 2000.

I should mention that there is also a children's benefit. Anybody who is eligible for the disability benefit and has a child up to the age of 18--or up to the age of 25 and is enrolled in full-time education--is eligible for the children's benefit, if they apply. It's a flat rate amount, worth $184 a month or $2,205 a year. It's not a lot, but it is important. This benefit has some serious interface problems with other insurance, especially the private insurance companies.

This is just a very brief statement. I wanted to talk briefly about these aspects of the plan, because the plan affords some very important protections, which we want to ensure are protected in any review.

What are the challenges? There are several challenges I'd like to address: the higher and rising caseload issue, or whether it is rising; the eligibility criteria; some of the administrative problems; the interface issues; the medical conditions referred to around the table; and the expectations regarding work.

I think a concern with the disability benefit has always been how high the caseload is and how high it is going to rise. We can almost predict retirement benefits. While we don't know if people will retire if they're 60 or 65, we can do some fairly stable, predictable actuarial numbers in terms of retirement benefits. It's a little bit more difficult on the disability side, as you can imagine. It's far less predictable, and there are some conditions we are now seeing that we will have to decide whether or not to accept. There are concerns about pressures.

What has happened with the caseloads? Since the first disability benefit was paid in 1970, the caseloads have risen fairly steadily. This is because people were paying in and the program was actually taking effect. We expected this. In the late 1980s it went down a little bit, but it went up dramatically between 1990 and 1995. After 1995 it levelled off. But the increase between 1990 and 1995 gave rise to a lot of questions about what was happening in the disability program. I think there was almost some panic about where was it going and where would it all end. In fact, we did a little commentary on that called History/Hysteria, because we felt there was a little bit of hysteria growing around the plan, which could be very clearly explained by the history of what was going on at the time. The rise in caseload at that time was actually due to some very explicit parliamentary directives, which sought to open up the program because of the problems parliamentarians had actually seen.

À (1020)

On the little bit of history around that, in 1981, a parliamentary committee put forward the Obstacles report, which identified many of the limitations in the Canada Pension Plan disability benefit and called for major improvements in access and the level of benefits paid. As a result of that report, several major studies were done on the comprehensive reform of disability income in the country.

Those proposals were never pursued, primarily because of their price tags and because they were somewhat administratively complex. Nonetheless, Parliament decided to proceed with some of the proposals for improving the plan. So in 1987, a legislative amendment was put forward to change the contributory criteria and improve the level of benefit.

It said that prior to 1987 you had to have five out of ten years to contribute, and after 1987 you had to have five out of ten years or two out of three years. The retroactivity claims were extended from 12 to 15 months, and the flat rate benefit was raised from $91 a month to $233 a month, to be parallel with what Quebec was offering, because Quebec was actually at a higher level at that point.

In 1992, another important parliamentary directive--a private member's bill--lifted the limit for late applications. It was felt that most people didn't know about these protections, and it was important to make sure people knew what was going on and they understood it, so Parliament acted to open up the program.

Guess what happened. The caseload started to go up. I don't know why there was such surprise about it, since that was actually the purpose of some of these changes that were made.

In 1993, an Auditor General's report identified many of the administrative problems associated with the program, but also said that many Canadians did not know they were eligible for this. He recommended that there be a major educational program.

As a result of that, many of the provinces did complete reviews of their respective programs and transferred a lot of people over to the disability benefit. In Ontario, about 16,000 social assistance recipients were transferred over to the CPP. New Brunswick, B.C., and Ontario did major reviews. So again, there were some pressures on the caseload, but they were really in response to a directive that was in place.

Another important factor relates to the eligibility issues, generally speaking. In 1989, an internal HRDC memo talked about the importance of looking at socio-economic factors, in making some decisions about the cases. It wasn't a parliamentary memo; it was an internal memo talking about the importance of looking at some of the other factors that affected employability. This memo, in turn, was the result of several decisions that had been made at the appeal board level, where there were questions about how the program was being interpreted and how the eligibility criteria were being defined. Of course, it had the effect of opening up the caseload.

In 1995, new medical criteria were brought in to provide guidance to the people in the department making the decisions. Effectively, since 1995, we've seen a capping and a drop in the number of people who have come on to the program.

You could say that's a good thing, or you could say it's not a good thing. That's what we're looking at in this review. What happened at that 1995 turning point? Had it opened up too much, or was that the way it was supposed to be? What have been the implications of that? I think those are some very important issues.

The eligibility criteria relate to that rising caseload, and as we've heard, there are concerns about the interpretation of the severe criterion in particular. Should it include looking at other factors that affect employability? Should it look at the level of literacy, the level of language proficiency, violence somebody may have experienced in their lives, and the unemployment rate in the region where the person is applying? Should all those other factors that affect employability be taken into account here?

À (1025)

It's very important in the sense that if you look at some of the appeal board judgments, there is varying interpretation as to how that criterion should actually be interpreted or applied, and I think it's time for a good discussion in the country. In fact, the Federal Court, in its August 2000 decision in the Villani case, raised the issue about the severe criterion. There are at least 100 pages of judgment with respect to the word “severe”--more than you'd ever want to know or could understand about it, raising questions about the interpretation of the eligibility criteria over the years and saying we really need to look at this because maybe we've gone too far in terms of the interpretation.

At the same time we're looking at the definition of severe, we also have other medical conditions. A number of people around the table have raised this, and I think it's a very important question. Are there other conditions that should be eligible for disability benefit that may actually not fit into the current criteria because they don't have the medically objective features you'd be looking for, but that are nonetheless considered to be disabling conditions?

You mentioned, for example, George, fibromyalgia, chronic stress disorders, mental disorders and mental illnesses, AIDS, and a number of other conditions that are new in the sense that when the program took effect, we didn't think about them. In some cases, we didn't even know about some of those conditions. You have workers' compensation boards in some of the provinces recognizing some of those conditions, and there is pressure on the Canada Pension Plan to make some consistent decisions in that regard.

So I think it's a very important issue that people are bringing to the table.

A third issue, again raised by a number of people, is the expectation regarding work. I think it's very important that there be some really serious discussions about this. There are far more people who are employable now, partly the result of some of the technologies we have, partly the result of the fact that with medication, many people can continue to function for periods of time. Yet the Canada Pension Plan continues to operate as though the world were black and white. You're either in or you're out. And we actually know that the world is very grey right now, both figuratively and literally, so this is an issue that has implications more broadly for retirement pensions too.

Should we be looking at partial benefits? Should we be looking at a system that allows movement in and out, and if we do, what are the implications in terms of insurance? Does it then become an income-tested program? Are we really changing fundamentally the nature of the protection we're providing?

It's very, very important. And I agree with the comment that was made that if we are going to look at expectations regarding work, we can't look simply at the program itself. That would be very dangerous, I think.

It's important to look at the whole other set of associated supports that are available with respect to disability supports, and the tiny, perfect committee has been looking at that issue. The tiny, perfect committee also has been looking at the cost of disability-related supports and services and trying to make some changes with respect to tax provisions. But there are also a whole set of changes that could be made around accommodation.

So if there is any movement around the area of expectations regarding work, there must be a whole set of associated changes. Otherwise, I think we introduce some reform to the plan that in the long run could end up hurting people dramatically.

There are administrative problems. Some of the issues I've talked about are actually long term and would require some really serious study and reflection and involve many other systems. But there are some administrative issues that can be resolved, probably in the short term, probably right away.

You'll be hearing from many consumers who have had difficulties with the program just with getting basic information. Sometimes they call and they get a phone line; they get stuck in the “dial 9, dial 1, dial 3”, and they can't actually speak to anybody. In other cases they get letters about decisions with no explanation as to why they were refused, for example.

There are many, many problems that have been raised about the appeal procedures, about people being treated consistently, people being treated with dignity, people sometimes feeling that they were misunderstood or in some cases even entrapped in terms of what they were effectively forced to say. There are concerns that the appeal procedures are not recorded, so if you wanted to go back to check on what happened, there would be no written record.

À (1030)

At the same time, I think it's important to bear in mind that both the program and the appeals procedures are under severe pressures. There are heavy caseloads and very difficult expectations in terms of the financing and trying to make sure we don't push the program into an irresponsible area. You find people working in the programs who are also caught in some very difficult dilemmas. I think it's important to recognize their concerns as well.

There are some really serious issues around the interface between the Canada Pension Plan and other private insurance programs in terms of who qualifies and what private insurance companies expect in terms of referrals. People are often sent over to the Canada Pension Plan even though they may not qualify, but just in case they do, they are sent over. This creates an inordinate burden for the system.

But at the same time, there is the serious issue of the clawback when people do qualify for disability benefits. People paying into an insurance plan expect to get out of it whatever their entitlement is, and it's being treated right now like an income-tested program, which was probably not the intent.

As well, complex interface issues around the question of who's the fist payer come up with workers' compensation and welfare. Was the Canada Pension Plan intended to be first payer? Was that the legislative intent? Maybe we should clarify who needs to take responsibility first in relation to this whole complex set of programs.

I wanted to make reference to the financing issues I talked about and the pressure on staff, only because there have been some recent financing changes to the plan. I don't know whether you'll be getting into any of these discussions or not. Certainly, there are people around the table--David Walker, for example--who could speak about this very well and are very knowledgeable about this.

But recently the Canada Pension Plan has had some important financing changes that actually may effect the way decisions are made about the plan in the future. From the time of its inception until 1997, it was financed on what we call a pay-as-you-go arrangement. Contributions were paid over a band of earnings. A contingency fund was built that was basically worth two years of benefits.

Well, in order to secure the financing of the plan, and get more money into the plan, because it's funded primarily through employer and employee contributions, the plan was shifted to what we call partial funding. This means that the contribution rate increases were ramped up, increased rapidly over a shorter period of time, to build up a fund worth five years. This is a fund for investment that can generate money, interest, and other kinds of dividends that can then be put back into the plan.

Some would say it's on a far more secure financial footing than before, and that's a very good thing. Of course, it depends on how the market goes--and that's always up in the air and unpredictable, as you know.

But the other positive aspect of this is that it puts more of the burden for financing on the current generation. There are all these questions about the intergenerational tug in terms of the Canada Pension Plan disability benefit. But the one piece I think is important to note is what basically was an agreement to limit contributions by the year 2003. We would cap contribution rates at 9.9% and would not go beyond that level.

This means that if we are going to stick to that amount and say we have only a certain amount of financing to play with, unless we generate a lot of income on the investment side, then the fiscal parameters of the plan are essentially set. That's why I'm concerned about the fact of a fiscal review of this plan. I am very concerned that we take into account not only the facts about these fiscal pressures, but also the human concerns, which are equally important to look at.

There are many issues to be addressed. What are the options for reform? I only want to go into those very briefly here because these options have been put forward in many different reports. I'd like to talk about the key streams of reform. Then perhaps we can have some discussion about the details in our round table.

À (1035)

The key streams of reform have to do with immediate administrative kinds of reforms that can be undertaken in the short term, some of the medium-term reforms that we may be able to do without tremendous difficulty, and then some of the comprehensive reforms that really would require some major reconfiguration of many income security programs.

Regarding the immediate reforms, I think anybody around the table probably could come up with several immediate reforms. I know the question about the recording of the appeal procedures, for example, has been made by a group that Harry Beatty deals with, and that certainly would be very helpful. Getting information easily, ensuring consistency of decisions, and training for appeal board members with respect to active listening are important administrative reforms in the immediate term or the near term.

Integration with other programs, even if it means putting together some of the vocational areas, as Harry Beatty was mentioning, making sure you have more consistency around vocational training and that those vocational interventions start earlier in the process, is something that can be done. The CPP actually has been doing that in several cases with a number of provinces and having discussions with some of the worker compensation boards across the country. There may be more room to move in terms of employment insurance. Both programs are administered by the same department.

Around some of the medium-term issues, I think we have to start looking at the clarification of the eligibility criteria, as was mentioned, and the issue of partial benefits. At the end of the day, that may end up being a long-term kind of proposal if in fact it spills over onto the retirement part of the benefit. But the work-related kind of support is something that can be done immediately. There is a lot of work under way. It would require coordination with some of these reforms.

Finally there is the area of comprehensive reform. There's no shortage of reports, work, and studies on the issue of comprehensive reform. There have been proposals put forward in the country for the past 20 years about reforming the Canada Pension Plan disability benefit by taking it out of CPP, having a new form of earnings replacement benefit, having a comprehensive accident insurance in the country, having a comprehensive public insurance in the country that would include everything, having comprehensive private insurance in the country, and also having guaranteed income. As many of you know, there are many different forms of guaranteed income. While we talk about the guaranteed income, there are several different ways in which this can be done.

All this is to say that there is a lot of work upon which we can build. Of course, cost-benefit studies would have to be done. I think the most important thing is that in any reform, in anything we look at in terms of comprehensive reforms, we must make sure that some of the protections we have in place now actually are built in to any new reform and that we don't lose some of the key aspects that have been so important with respect to the Canada Pension Plan.

I wish you all the best of luck in your deliberations. Thank you so much, on behalf of all of us, for including us in your discussions.

À (1040)

The Chair: Thank you very much, Sherri.

Are there any parts of Sherri's presentation that anybody wants to add to in terms of their favourite moment in history or intent of legislation?

David, do you want to just tell us what on earth happened in 1995?

Mr. David Walker: First of all, Sherri's summary is first class, and the paper she's working from, which has been published by her institute, the Caledon Institute, is really worthwhile going over if it's available to you. Her history at the beginning is, I think, the best 12-page summary you're going to find anywhere in Canada on the history of the Canada Pension Plan.

The significance for this group is the impact of the changes made on the disability pension plan, a component of it, in 1996. I've commented elsewhere that the disability component of the Canada Pension Plan was not widely known or widely discussed, particularly at the political levels, until we went into that review process.

Now that the legislation mandates a regular three-year review, it's incumbent upon people like the advocates around this table, Madam Chair, to make sure that their views are known and that this committee's views are known as we head into next fall, when a national review will take place. It will be led, I would anticipate, by the Department of Finance within the Government of Canada because that's where the program is registered. It's shared with HRDC.

The key thing is to take some of the ideas Sherri has given us, particularly on questions of eligibility, and some of the new medical criteria that were introduced in 1995-96 and make sure this is understood at the political level as to what impacts they're having.

When you're putting together a package--and I reflect back on the 1996 package, which became the 1998 legislation--sometimes you know exactly what you're doing and sometimes you're not sure what the impact is going to be. Then two or three years later it may be positive or it may be negative, but you need to hear voices from the communities that are represented here to hear back what these impacts have been.

I'm particularly interested because certain things weren't discussed at all in 1996, the questions of new diseases, episodic diseases, and the greater flexibility you have to build into the disability program to take into account these changes.

Without being unfair, I think there's almost no national dialogue taking place on this at all outside these communities. The more it's in the public domain and understood....

So to go back to Sherri's point, I remind you that some of these things are long term. We don't always understand diseases at the outset, but there are experts here who can help us set the stage for your hearings.

As you know, the CPP went into a regular five-year review beginning in 1980 and is now going into a regular three-year review. The reason we did it was so we wouldn't get into another crisis situation as we did in 1996, either in the financing or in the actual program. If people can take this as an opportunity to start early, their ideas can work their way into the system to make sure the disability program is more responsive.

I think Sherri has remarked more than once that this is also an issue in the private sector, one I've come to know in the last five years. One should assume that there are people there too who are trying to figure out the best way to respond to their clients and to integrate the programs at the federal-provincial level.

That would be my way of responding to what Sherri had to say.

À (1045)

The Chair: But in terms of the crisis you referred to, was that a cost containment crisis?

Mr. David Walker: It was generated by repeated comments from the auditor--the chief actuarial officer, to be precise--who kept giving warnings that the plan was not sustainable. If it continued on the way we were funding it, pay as you go, we would run into a 14% pay rate in the early part of the century. That was one crisis.

Then, as Sherri has said in her paper and as others around the table know, because of the change in criteria implemented by parliamentarians, including myself at the time, the cost drivers behind that were more significant than we had anticipated, so there was a crossover.

I want to be careful how I use the word “crisis” in relation to disability. There was a crossover at the time we were doing the public review, and the information is based on the upward movement in the expenditures, up to 17%. In fact, a number of changes that have already been implemented by HRDC are not part of the record because they are so recent.

The crisis was a result of the pressures on the plan, but the basic philosophy in the public pension industry in the western world was beginning to move from a pay-as-you-go system to a system with some buffer to prevent it from falling apart. One has to be a bit of a historian to understand that public pension plans have fallen apart in the past. They are not a guarantee.

People have to remind themselves that with these things it seems as if we've always had it, but it was a big battle in 1966 to get it. Previously, other plans had failed around the western industrial world, so there's a note of caution when people say it's a crisis. It's not necessarily a manufactured crisis, but you have to look ahead to make sure you have enough money in the bank to pay everyone.

The Chair: And at that time, making the plan more flexible, such that people could more easily go back into the workforce, to save money that way--was that considered?

Mr. David Walker: No. There was not much attention paid to the flexibility parts of the plan. It was more on the stabilization of the financing. That was of much greater concern. As I said, because I led the public hearings--if I can wimp out--there was not enough time to do all of the progressive thinking that had to be done attached to it. That's why we're quite insistent on getting to these three-year reviews. You can see issues stacking up that had to be dealt with, and this is one of them, but there was no serious advocacy work done in the 1996 review that would have caused us to incorporate the flexibility that almost everybody in the room had noted in their opening remarks.

The Chair: Thank you.

Bob Baldwin, and then Harry Beatty.

And here comes Anita Neville from Winnipeg.

Mr. Harry Beatty: My member of Parliament, I must say.

Mr. Bob Baldwin: I want to speak primarily to the question of the caseload in the mid-nineties, because you had asked whether anybody might want to elaborate on that.

Over the last couple of days, what I've been interested in doing is looking beyond the total number of people on CPP disability benefits at any moment in time and just taking a look at the flow of people into the program. In doing so, I was surprised at some of what I found, so I hope you agree that it's worth relating.

Certainly if you look at the number of applications received between fiscal year 1989-90 and 1993-94, and the number of CPP applications that were granted on initial application, what you notice first of all is a huge increase in the number of applications received during that time period. Actually, a very stable portion of them were granted. That is to say that the significant increase in the number of new disability awards being made was driven less by the way in which discretion was being exercised in relation to the applications that were coming in, and more just by a huge growth in the number of applications. What prompted it? There is a lot of speculation in the public domain. Some of it appears to have been driven by provincial social assistance programs becoming much more insistent with disabled social assistance recipients that they apply for CPP disability. The same could be said for private insurers.

It's interesting that after the mid-nineties there is a significant decline in the number of applications received--so that, for example, in 1993-1994, 109,000 applications were received and by 1999-2000, that was down to 59,000, almost a halving of the number of applications received--and a continuous decline in the portion of applications that lead directly to benefit awards. So you have both these things at play in accounting for the decline in the number of new awards following the mid-nineties.

Actually, these data, I should say, are data that are part of a response to an MP's written question, but they're also corroborated by the data in the income security programs data book that provides you with the number of new awards given each year.

The other interesting thing is that it appears there's a larger portion of applications leading to appeals at the second and third levels. You see them growing after the mid-nineties as well. It appears, too, that a higher portion of them are initiated by the minister than was the case in the past. All of which is to say that I think in terms of the administration--the existing rules--there are some interesting issues for you to look into.

If I could add just a couple of other things while I may, I did want to look at the age and gender composition of disability recipients, comparing late eighties, mid-nineties, with the end of the nineties. One highly predictable thing you find is that a much larger portion of the benefit recipients are women. Naturally this reflects changes in the participation in the labour force.

What was also interesting to me was to see that at the margin, though, the growth in the number of disability recipients between the late eighties and mid-nineties was more in younger age groups than in the oldest age groups. The oldest age groups account for the largest number of people, but if you're looking at what was the proportionate change between the late eighties and mid-nineties, it was actually in younger age groups.

Again, I should say in this regard that when the CPP Advisory Board was recommending the move to the two years' contributions in the last three years, certainly part of what was on the board's mind was first that this made it more similar to private, long-term disability insurance, which does not normally require long periods of labour force attachment. It was also motivated by a concern that young families could be just as adversely economically affected by disability as older families. So it was interesting to see the package.

À (1050)

David Walker knows that while we share common views on many things, we don't necessarily share common views on the state of CPP finances in the mid-1990s. I won't get into chapter and verse on that, but certainly the commitment to a contribution rate below 10% is an incredibly tight constraint on the future of the Canada Pension Plan. My own view is that it's quite an inappropriate one, but it's quite tight for all parts of the program.

The Chair: Next is Harry Beatty, and then Paul Crête.

As sort of the poster girl for accountability, and whatever, at various Treasury Board round tables and things, when I've been asked to talk about CPP, in looking at some of the reports, I've always been concerned it's evaluated by the number of busy signals, as opposed to whether or not people feel their income is secure.

My view, as a lowly family physician talking to patients, was that they wanted to know, if they were in an income security program, whether their income would be secure, or would brown panel vans chase them around trying to see whether they carried their groceries or not, when it had nothing to do with their depression or their fibromyalgia.

When somebody tells me a certain number of cases went down and this many people came off CPP, unless somebody can tell me that person is now working or on social assistance, as a parliamentarian I cannot evaluate whether that's a good thing or not.

The round table today needs to help me on the follow-up of these so-called good statistics of people coming off CPP disability. Do we actually know what happened to them, before we start deciding whether this is good or bad? I don't know whether Bob has any figures or insights on that.

À (1055)

Mr. Bob Baldwin: Sadly, I don't, although I'll try to find them. But a large portion of the exits are retirements and deaths.

Ms. Sherri Torjman: Just to clarify that, people receive disability benefits up to age 65, at which point they go on to retirement benefits, so you're absolutely right. But I think the declining caseload might be due not so much to people going off, but to not having new people coming on. In that case, I think your question is actually quite profound, in terms of what they are doing to track the people who are not accepted to the program and what happens to them. I don't think we know that, quite frankly.

The Chair: I think I reacted to one sentence in a report that talked about recipients coming off. I wasn't sure whether that was at the magic age of 65 or if they were people who had been re-evaluated. There had been some, and the Auditor General and various people had asked for that to happen.

What happened to these people? Did they have chronic fatigue or fibromyalgia? Were they the ones who were much more difficult to measure? That was my feeling.

Harry.

Mr. Harry Beatty: I think Bob made a number of the points. I would encourage anyone to look at the income security program stat book from the Internet, because some of the comparisons give a pretty clear picture of what is going on. If we look at this one table that shows the monthly average of new benefits across the country--excluding Quebec, of course--in 1980 it was $2,147; in 2000 it's $2,144. Basically it's the same as it was 20 years ago when there were 2.5 million fewer contributors, the population was younger, and a lot of disabilities were not yet recognized.

So I think if you look at that, or if you look at the total amount spent on this program, it's been at $2.5 billion for the last five and six years, with no accounting for increased wages, inflation, a larger population, an increased number of contributors, and so on. I think there is no doubt that both the administrative and legislative steps taken over the past number of years in response to the funding crisis have disproportionately affected the disability pension as opposed to other components of the plan.

Looking only at the change in the contribution rule from five out of ten--or two out of three--to four out of six, you can see that five out of ten did pick up a lot of people who may have contributed for 20 or 25 years, in some cases from the inception of the plan. But with the onset of a disability, in combination with other factors in their lives that kept them out of the workforce for a couple of years, those people are now not eligible.

Those other factors can include the inability to find a job, so this has an effect on the groups in our society who are traditionally disadvantaged for whatever reason. It also affects women who are outside the workforce because they are the caregivers not for a child under seven, but for an older child or a disabled adult, which is very common in our society.

I believe many people--and I don't know this statistically--who may have worked and contributed for 25 years are not eligible any more because the five out of ten is gone. Four out of six is much tougher for the people who have had a gradual onset of disability and those who are outside the workforce for other reasons--economic, social, or whatever. Really, the number of new cases coming on is considerably less than half of what it was five or six years ago, when the administrative and other changes started happening.

Now, as Sherri explained, there was something of a spike up around 1994 and 1995, I think because of Bill C-57's permitting late applications. There's no doubt that this gave an awful lot of people a second chance, and there was a spike upwards at that time, which may have overrepresented the extent to which people were being found disabled.

I think that's largely the same picture Bob saw in the statistics.

Á (1100)

The Chair: I think, Harry, those are some of the cases we see in our offices, too, as members of Parliament, cases where someone has worked for 25 years and then lost the job, but has become sick in the last two years. It might even have been that there was trouble diagnosing fibromyalgia or chronic fatigue or even MS.

But something happened, and the person has been technically unemployed for two years, but had worked for 25 years before then and now doesn't qualify. I think those are the hardest ones for us as members of Parliament to understand. If a person has contributed for 25 years, why should we have this tight restriction on whether that person can claim what he or she had duly paid into?

Monsieur Crête.

[Translation]

Mr. Paul Crête: Thank you, Madam Chair.

I would like Ms. Torjman to illustrate the situation she mentioned. She says that we need to be very careful about how programs interact. I believe I understood that we can improve the Canada Pension Plan, but if we do not adjust other measures, whether tax credits or other forms of assistance, we could, despite the best of intentions, end up in a situation where people are worst off than before. I would like you or someone else to provide me with a few examples of that type of situation so that we can fully understand it.

[English]

Ms. Sherri Torjman: Just one example.... If in fact there's an expectation somebody would go to work or go back to work, the associated changes would have to be made, for example, to some of the disability credits. You'd have to change the disability credit to allow more of the costs to be claimed, because there are serious costs associated with going back to work. There would have to be some other associated supports. This is one of the areas of interface. It has to do with looking at a system of employability.

But there are other sets of issues related to interface questions. If one program is going to have to pay a benefit, does another program then take back, or claw back, from what they're paying? This has happened in a number of cases. For example, somebody made reference to it with respect to the private insurance industry, in cases in which somebody claims or is eligible for a disability benefit and is also eligible for additional coverage because they have paid into a private plan. They are considered to be eligible for that plan, but the value of their disability benefit is taken back from the private insurance. This is deemed to be a problem, which requires that all of these programs and their interactions be looked at.

There are questions too about interactions in terms of assessments and whether it's possible to do joint assessments in some cases. Somebody was mentioning, for example, that you then don't have to do two or three different kinds of filling in of forms and assessments of vocational potential and having different definitions employed every time. So there are ways of integrating some of these procedures that cut across various programs.

I think the interface issue you're asking about actually has many different dimensions to it. They have to be sorted out at different levels in terms of the benefits, the common intake or rehabilitation, and the other associated supports that would have to be in place if you're going to introduce a change to the Canada Pension Plan.

Á (1105)

The Chair: Unfortunately, the insurance industry didn't come today.

One of the questions we had for them was exactly this point of assessments. I know there are a number of concerns that the insurance companies have effectively downloaded the cost of assessments to the CPP and then used these medical assessments for their own adjudication. There seems to be a lack of balance or fairness there. It would be sporting if they were able to share the costs of these assessments.

I now have Cam Crawford, and then Dr. Muzumdar, who thankfully is the only member of the medical profession here. Unfortunately, the CMA and the College of Family Physicians do not seem to have shown up. So thank you for holding up that side.

Cam.

Mr. Cam Crawford: As someone who does research on issues of disability, I've often been frustrated at the inability to answer the question that has been put on the table: what happens to these people after they go off the program? Unfortunately, the caseload data don't really tell us anything, because I don't believe they're followed. Or if they're followed, the information isn't available to the public, to the best of my knowledge.

The major data sets available through Statistics Canada, like the national population health survey and the survey of labour and income dynamics, are longitudinal, so you can track groups of people over time. They ask some general questions on whether or not you get income through the Canada Pension Plan, but they don't specifically ask whether you are receiving CPP retirement income, as distinguished from CPP disability benefit income. You know people who have a disability are getting CPP income, but you're not sure which program they're accessing. So it's a bit of a problem, in terms of analysis. It's maybe a fixable problem by simply requesting that Stats Canada just get a little bit more specific when they ask their questions, so you can get at the distinction between the two types of program recipients.

The Chair: Thank you.

Doctor.

Dr. Ashok Muzumdar: I have a couple of points.

Sherri mentioned that since the plan was introduced in the 1970s, I believe, there have been spikes up and down, and I can understand that at the beginning, when it was just introduced, there was the question of inertia. It would take a little time before it gathered momentum. It reminds me of starting up a car: it is not going to immediately go 100 kilometres an hour--unless your 16-year-old son is driving it. It takes a little time before it gets there.

One of the things I was intrigued by is that in the early 1990s--I believe Sherri said 1990-1995--there was an increase in this thing. I was pondering that, Madam Chair. That has something to do with the economic health of the nation. In the second half of the 19th century, 1870 or in that vicinity, a British economist--whose name escapes me, unfortunately--wrote a paper saying that a nation's physical health with respect to diseases and all that is directly proportionate to the nation's economic health. People laughed at him, but guess what? That is the case today.

In the early 1990s there was a downturn; there was a recession. Was that a factor? Harry mentioned that there was late application allowed because of the new legislation. That would, of course, be a factor, but I just wonder, what would happen if we were to review in a few years' time what has happened since 9/11? Would that show up as an increased number of applicants to CPP? That's one point I'm just throwing out as a question.

The second thing that's always struck me as a practising physician is that there is a certain xenophobia in the public perception to the effect that a large number of people take chances in applying. It's like buying a lottery ticket, if you will. If you don't buy, you don't win, as it's often said. People do try, but my personal experience is that they're really small in numbers, a minority.

By and large, most people who apply for it are legitimate, and some of those fall through the cracks and are denied. But that's not my experience, because as a physician I am there to make an unbiased assessment and then leave it to the discretion of the Canada Pension Plan. There is that perception that people are improperly applying and taking a chance, but those people are very small in number. That's my experience. A large number of the people are legitimate people, who do and should qualify.

That's just an observation. Thank you.

Á (1110)

The Chair: Doctor, did you feel that of that small percentage there was a disproportionate number of people who'd been pushed by somebody else to apply, even though you and I would know they didn't qualify? Frankly, quite often the clients know they don't qualify, but they've been pushed because if they don't, they will be cut off some other plan.

Dr. Ashok Muzumdar: Indeed, at least on one occasion I do remember that the patient himself said to me that so-and-so had told him, give it a try, you have nothing to lose; you might be surprised and get the Canada Pension. Yes, that is quite true. They're educated, so to speak, by their neighbours or relatives.

The Chair: Or their insurance company; that's the one I was concerned about.

Dr. Ashok Muzumdar: Yes, there's the insurance company, of course.

The Chair: Or there's a social assistance plan, where they feel everybody has to go through this hoop, which seems somewhat irritating.

Dr. Ashok Muzumdar: I put that in the category of it being the nature of the beast. That's going to happen in our society. By and large, most people in our society are very straightforward, honest people. There is always, in most people's minds, dignity in working because by working you have the satisfaction of being productive and contributing to society.

Of course, statistics will show that when you work, you actually make more money than when you don't work, even when you're on social assistance. You always have a better income, although you have to pay substantial taxes. That is the case, and I think most people are not dishonest. Most people are honest, but yes, they do get ideas, and sometimes that seed is planted in their minds by someone asking, why don't you apply for CPP? Insurance companies are part of that picture.

The Chair: I used to say, as some of you have heard me say before, I wish I had a stamp in my office that said, “Highly motivated, would rather be working”. I think that is the lens we bring to these conversations.

We welcome Monte Solberg, who we are delighted is the new critic for Human Resources Development for the Alliance Party. Welcome, Monte.

Mr. Monte Solberg (Medicine Hat, Canadian Alliance): Thank you.

I assume you're introducing me for some reason.

The Chair: No.

Mr. Monte Solberg: Okay, good. I'm just listening right now.

The Chair: I'm introducing you to see if you want to go to the bottom of the speaking list.

We have Francine, Sue, Wolfgang, George, Deanna, and Vincent, and then Monte, if he wants.

Ms. Francine Knoops: With regard to discussions around caseload and I guess your question as to what happened in 1995 and whether there are administrative factors at play with regard to the downward trend, it seems to me that one of the things your study might be able to do is provide Canadians with some objective information, do a little bit of searching around the changes in the caseload and what the changing disease patterns are, and whether a disproportionate number of those are from the new disease categories, to try to correspond that to some of the epidemiological data that is emerging, such as the World Health Organization's report last year that clearly indicated that psychiatric conditions are going to make up four out of the ten leading causes of disease burden.

So we have to do some connecting between our income support programs and predictions for disease burden and disability burden in the coming years. That's the only thing I want to offer.

Á (1115)

The Chair: Thank you.

Sue Lott.

Ms. Sue Lott: Thank you for letting me intervene. I know we're jumping around a bit in terms of subject areas, but I want to get back to this issue of integration of benefits and the relationship between various disability income programs and private insurance.

I think it's important to understand that there are a couple of obstacles here. One is the CPP legislation itself. The CPP act allows for integration of benefits. It specifically contemplates a situation in which somebody can be eligible for CPP disability and private insurance. Where the private insurance company has signed an agreement with the federal government to integrate benefits, they can act as the first payer of the CPP aspect of the payment that the person is eligible to receive, and then they get that as sort of a retroactive lump sum payment that goes back directly to the private insurance company.

The other problem is the uniform legislation, and the uniform legislation is the thing on which all private insurance, province by province, is based. It's a uniform contract. That uniform contract, which, as I say, almost every province replicates in some form or other, also allows specifically for this coordination or integration of benefits.

So there are two important obstacles there in terms of trying to deal with that issue. I just wanted to raise that.

The Chair: Wolfgang.

Mr. Wolfgang Zimmerman: Thank you, Madam Chair.

One of the observations I'd like to make is that I think a determination has to be made as well on the part of government as to where you would like to go and be with this program in the future.

I had the good fortune of spending the last 60 years, together with three others, being responsible for the Workers' Compensation Board in British Columbia. We had some choices to make.

In my mind, you have two significant elements. One is running essentially an insurance scheme looking at all of the elements that are critical to maintaining the viability of it and the questions around actuarial evaluations, access to the program, and long-term fiscal stability.

I think the other question that needs to be raised is to what extent does government want CPP to be a social agent for change? Where do we want to be involved and how do we want to be involved? I think it is the other side of the equation.

We certainly faced it and tried to answer the question, obviously, with substantial public input. I guess it leads to the second part of my question to Sherri and perhaps to Cam.

To what extent have we really done some solid outcome evaluations on the impact the program has had, in terms of looking at trying to prevent individuals, or trying to reduce the number of people, who would enter the system, with respect to looking at client profiles, occupational profiles, and so on? To what extent have we seen that? Do we have detailed profiles and assessments of those who apply to the system and are rejected? What happens to them?

In other words, looking at some very key evidence-based outcome criteria would allow us to become that type of a proactive agent for change.

What has been the impact on the system when we see major and significant structural changes in any one of the component jurisdictions of a province? What will happen to the system with the kinds of changes that are currently happening in B.C.? You have significant agencies that are contributing to disability support trying to take $500 million to $800 million out of the system through regulatory change. Where do you see significant redefinition?

I don't have the answers. I don't know whether Sherri, Cam, or anyone else can answer.

This is the type of research, in my mind, where if the organization or government would like to see the program become a major social change agent, outside the actuarial component of being an income support agency, it needs to take all necessary steps to maintain its long-term fiscal stability.

Á (1120)

The Chair: Thanks very much.

George.

Mr. George Cameron: Thank you very much. I have one quick observation and a two-part question.

You mentioned what happens to people who have chronic illnesses and fail an appeal. I can give some anecdotal evidence on it. I feel a bit awkward. We probably should have this story coming from someone who has a disability and has failed.

This goes back over a number of cases over a number of years. Typically, the people want to work, but can't, and end up losing everything. They could often lose savings and RRSPs. They'll lose their homes and the family will break down. They'll live alone. They may end up living with a family member or a friend. Then they lose the appeals and have absolutely no income. I think, and my experience is, they persist in the lifestyle. I don't follow it up, but it seems to me to be the experience.

I have a two-part question. This deals more with the administrative factors of what happened after 1995 and 1996. Mr. Beatty already mentioned there was a change from an eligibility period of five out of ten to four out of six. It has had a significant impact on people who have been in an appeal.

Some people, for example, may have stopped working in 1995, applied for disability pensions in 1996, and gone through various processes of appeal. In 1995, when they applied, the minimum qualifying period would have been the year 2000. Along comes the appeal in the year of 1998. They get to go before a review tribunal or appeals court only to find the minimum qualifying period expired in December 1997.

It places people in a very difficult position, especially given the other administrative requirement that they're supposed to provide objective medical evidence of the disability. They have to go back in time and it's a little problem.

What was the reason behind the change from five out of ten to four out of six?

The other question I had is on reassessments. I don't know if Sherri or Bob can talk about what is going on with respect to reassessments. It was another big administrative feature that was put in place, I believe, in 1996 by the Canada Pension Plan to, I think, provide some cost efficiencies.

Thank you. I hope they are clear questions.

The Chair: Maybe we should go to Susan.

Ms. Susan Williams: Yes, thank you. I just wanted to correct your first point.

If somebody lodges an appeal and waits for a period for that appeal, if the eligibility rules change, those changed rules are not applied to that person. So they don't encounter the situation you describe. Somebody who qualified under five out of ten, but had to wait two or three years for appeal, would still be qualified, even if the rules had changed in between.

The Chair: And on the second part of George's question, in terms of the reassessment....

Ms. Sherri Torjman: Susan, you may want to answer that too with respect to the reassessment and what happened at that point, because the department did undertake a major reassessment initiative in the 1990s.

Ms. Susan Williams: Having recently arrived in the department, I won't answer that myself, but I might ask Nancy Lawand to speak to it.

The Chair: Nancy, you're staying at the table.

Nancy Lawand (Director, Canada Pension Plan Program Policy, Department of Human Resources Development): I think Sherri mentioned there had been observations from the Auditor General both in 1993 and 1996. One of the observations was that there was no formalized system to re-evaluate people who were continuing on the benefit, to determine if they continued to be eligible.

The department did establish a reassessment function. It's part of the legislation, and there is legislative authority to review beneficiaries. That's been an ongoing program for several years, and it has been evolving to focus on clients with various criteria.

I don't know if there was something specific you were asking for, but if you require more information, we can provide that to all members afterward.

The Chair: Is it random? Is it an audit? Is it certain diagnoses that are most likely to need reassessment? How do you do it?

Ms. Nancy Lawand: There are various triggers established, but we're trying to determine the cost-benefits of doing some of these things. In some cases, there will be a date for reassessment when somebody is first granted--based on their medical condition. If it's the type of medical condition that isn't recurring, but has an expected outcome in a few years, then there will be a date for a review. In other cases, there are matches done against earnings that are reported to Canada Customs and Revenue Agency.

But the manner in which we're doing these is also evolving. We've started to do more phoning of clients when a reassessment comes up for review to see where the client is at before proceeding with a more formal review.

Again, we can certainly provide some additional information with more detail, if you like.

The Chair: Seeing that Deanna is the next questioner on the list, we were asking a while ago whether there were sector-specific advisory groups that help the department with certain diseases. My guess would be that it's unlikely somebody with MS is going to get a whole bunch better. And with certain diseases, from what I understand from MS, and particularly ALS, these people are sometimes dead by the time we've sorted this out.

For a disease like ALS, are we trying to design a customized program so it gets through really fast once you have a diagnosis?

Ms. Susan Williams: Our assessments are not disease specific. They relate to the physical limitations people will experience, but we do indeed have fast-track procedures for people with terminal conditions.

In terms of ALS, obviously we take that into account very much. One of the issues, of course, is what stage of the disease process people are in when they approach us, because in the early stages some people may wish to stay attached to the labour force.

Certainly, if somebody has had to leave the workforce because of that sort of disability, I would think they would meet our requirements or fast-track procedure. By the nature of our program, we have a different approach to some other countries. We don't say, “Diagnosis X; that's a tick”. We try to look at the full picture.

Á (1125)

The Chair: We talked about this with the MS society, the ALS, and various organizations--consulting with a disease organization. Maybe this would help with fibromyalgia and chronic fatigue as well. The MS people know exactly where in the disease they think people should get a pension. That group of people as a consulting group know a lot about that disease.

Some of the problems I see in this pension is that there are one or two people with chronic fatigue that everybody else knows shouldn't be getting it, and that puts a terrible blight on the whole program. But if those people were involved in the determination of where in this disease report card, whether it's HIV or.... They could help us share the burden of deciding when somebody gets it and whether it was indeed disease specific.

In some problems, obviously, there are people who have two or three different conditions, where two and two makes ten. Maybe you also need what we do in family medicine, that is, a geriatric assessment, because it's so complex as opposed to complicated, and it therefore takes a very specific kind of assessment.

Anyway, maybe Deanna can help us with what she's suggesting her organization would do for HRDC on an annual basis for free.

Voices: Oh, oh!

Á (1130)

Ms. Deanna Groetzinger: Certainly diseases like multiple sclerosis are unpredictable. In terms of the unpredictability of the disease, the attacks, the getting better, I think we share that with some of the people with HIV/AIDS, and also some mental illnesses.

There are some complexities that certainly have to be grappled with. But in our experience, by the time a person comes to terms with the fact that they now have to leave the workforce, probably because of what were commonly fatigue problems, probably because of some cognitive things, which don't necessarily add up to the physical disability that one often thinks of around mobility issues, they have had problems of even staying attached to the workforce on a full-time basis. So we're getting into some issues there.

There are a number of things in terms of what we would like to see. We would like to see a more flexible system that would take into account some kind of part-time work. I know there has been some pilot work done on this. That could be very beneficial for people who have the kinds of disabilities that do not exactly come and go, but whose effects are felt much more severely at some times than at others.

But one thing experts in MS have said is that essentially unemployment is an expected outcome for most people with MS. I think that's the single message that we need to convey to HRDC officials, and we are trying to convey that in an educative kind of way.

That being said, I like what I'm hearing about integrative systems, better integration with perhaps possibly private insurers, possibly with some provincial programs. If that kind of system could come about and also a system that would allow people to do some kind of part-time work, that would be a great step forward for these kinds of unpredictable diseases and may not be any more complex than we have now. I think people would have to work together a lot more than they are now, but I'm happy to hear that we're trying to think outside the box. That's very encouraging.

The Chair: The question this group needs to help us with is whether CPP disability is the best vehicle for part-time work or whether there is something that should be done in collaboration with a different way of utilizing EI. Are there other ways that this could happen?

We have Vincent next. Then at some point I'd love the commissioner to jump in, or Tina, in terms of what actually your experience has been, when you actually see these people face to face for the first time, and how that actually changes your assessment of what the quality of life of these people really is. Maybe Vincent can help us with that too.

Mr. Vincent Boyce: Most of my questions were asked by George. I have quite a number of answers.

One of the things he mentioned was people losing their homes, etc., when faced with this type of crisis. One of the things that bothers me quite a bit as an advocate working on behalf of people is seeing private insurance turning people away and saying, you should seek an alternative. That has been said to me many times on behalf of other people. Have you ever thought of looking at CPP disability? Have you ever thought of social assistance? People are frustrated by this. Very often they are forced to apply for CPP and then are turned down, as we well know. Based on the criteria, they were not eligible for CPP. Of course, these people get lost in the system. They've been turned down by their own insurance and referred to CPP, which we knew they weren't going to get, and suddenly they drop through the cracks. That is happening quite a lot with a number of people I've been dealing with.

Á (1135)

The Chair: Are those people mainly injured workers?

Mr. Vincent Boyce: Most of them are.

The Chair: They were turned down by the Workers' Compensation Board.

Mr. Vincent Boyce: Yes. The board asked me whether I thought of looking for an alternative means of income, even though they knew the person couldn't go back to work.

The Chair: How do you feel the Workers' Compensation Board is doing in the area of mental illness and work?

Mr. Vincent Boyce: It has improved slightly, but it's a long, uphill battle. There's a lot more that could be done.

The Chair: But are there people with complicated conditions that therefore are sent over rather than having Workers' Comp deal with them on their own?

Mr. Vincent Boyce: Correct.

The Chair: Peggy, we'd love to hear about the process you've been working on for HIV/AIDS.

Then we'll hear from Monte.

Ms. Peggy Proctor: I was hired by the Canadian Working Group on HIV and Rehabilitation to invite disability groups to talk about common issues pertaining to episodic illness. Some of the people around the table were from organizations representing diabetes, MS, mental health, and cancer.

When we started to talk about what's unique about episodic illness, income security was a huge issue, and that related to income security in all parameters, whether that's private insurance, public plans, or whatever. People just need to know they have an income that's secure and that it isn't tied to someone saying “You are well enough to work, so we'll cut off your benefits”. Then when you go to reapply you're told, “You have this pre-existing condition, so you're not eligible to be reinsured”.

There are many disincentives and barriers to prevent people from being able to participate in the labour force. The number of commonalities between those groups was overwhelming.

One of the other issues that emerged was the definition of disability at different levels of government, in the various programs, and the public and private plans. The word “disability” tends to imply physical disability. They'd like a permanent one that doesn't change, because that's hard to respond to or cope with from an administrative perspective.

Some of the other issues that emerged were things such as care, treatment, support, and the integration of services on the health care delivery side of things. I'm trying to think of the other key themes that emerged. Maybe that's all I'll say for now.

The Chair: Thank you.

Monte.

Mr. Monte Solberg: Thank you, Madam Chair.

Perhaps I'll start with a comment first. One of the most disturbing things about this is the idea of changing the rules in the middle of the game, especially without legislation. Hopefully the department is conscious that this is really unfair and that there needs to be a debate about these things. If we're in a position where the plan is not economically sustainable or where there are other problems with it, at least there should be a public debate.

I want to ask a specific question about this fast-tracking for terminal diseases. Would it be possible to describe this process. Secondly, do you keep track of how long it will take you to get benefits into the hands of people who may be diagnosed with a terminal illness?

Á (1140)

Ms. Nancy Lawand: In terms of the second question, we have a service standard generally for processing our applications. It's 62 days, I believe, at the initial application. There's an ongoing monitoring of that, regardless of whether it's a terminal illness or not. All our applications are processed in the regional service delivery system and there is a process for ensuring that ones that come in showing a terminal illness are reviewed as quickly as possible. Staff know they have a certain general speed of service to stay in touch with. Those other applications are looked at as quickly as they can be within that standard.

I guess that covers both questions.

Mr. Monte Solberg: Obviously it is a judgment call to some degree. Are there hard and fast procedures, then, to push along somebody who has ALS so that we can really get the benefits to them? As the chair said before, we don't want this thing to only get looked at and dealt with when the person is on their deathbed. Are there some hard and fast procedures or is it just a judgment call?

Ms. Susan Williams: Perhaps I could amplify what Nancy said. Looking more generally at people's terminal illness, of course, whether or not they're on their deathbed partly relates to when they apply, and some people actually apply quite late in the process. What happens is, if somebody comes in with a terminal condition, they move up to the front of the queue.

Usually the complex part of an assessment adjudication is the medical part. If you have somebody with a terminal condition that becomes very straightforward, the administrative processing can be quite fast. I don't have data at my fingertips on the time it takes. We can certainly look into it and see if we have that kind of information for you. We obviously try to do this as fast as possible.

Something else I should mention too that we've instituted in the last year or so is early client contact, where when we get an application we get in touch with that person straight away. Certainly at that point, particularly if it's somebody with a terminal condition, we would reassure them that we would be trying to process it as fast as possible and we would give them some idea of when we would hope to have an answer. I'm afraid I can't be more specific at this point.

Mr. Peter Smith: I have a footnote on Mr. Solberg's question. From the review tribunal's standpoint, we don't have hard and fast rules to fast-track those kinds of diseases--for example, ALS--but we do have judgment. It may be something that both we and the department should look at.

Similar to the department, we have standards on how quickly we get people to hearings and how quickly the decision is issued and so on. They are not condition or disease specific now, but perhaps we should be looking at this.

Mr. Monte Solberg: I think the way to know that would be to have some kind of a performance audit that tells you how long people who have these conditions have to wait. It's not clear to me you have that, but perhaps you should.

Mr. Peter Smith: Just on that point, performance audit, no, but I can let the whole group know that tomorrow we are receiving at review tribunals a major so-called client satisfaction research report: 1,400 of our appellants--I believe the department knows this work is being done--and 200 of those are, in effect, in the category of those who chose not to appeal. We will endeavour to make summaries of this report available to anyone. I consider it a public document.

We've received some initial information on it that gives us a hint of how well we're doing, so to that extent.... But this is qualitative information. It's not what a performance audit with hard numbers would produce, but when combined with other management information, we may be able to get a kind of evaluation.

Mr. Monte Solberg: Thank you.

Á (1145)

The Chair: I have seven people on the speakers' list, and I think it's important that we do respond when somebody here has the information for the question that has been asked.

First, I'd like to welcome Nancy Karetak-Lindell, who comes from about as far away as you can come, from Nunavut. But also I think most of you recognize that Nunavut has probably the most impressive mapping and audit of persons with disabilities. It's just that most of the people up there don't qualify for CPP disability; therefore, the program is somewhat useless to them. We always welcome Nancy's lens on what we're doing in this big country.

My suggestion is that we go through the people on the speakers' list, with the odd jump-in. We will then serve a light lunch that we hope you will bring back to the table so that we can hear from Marg Ruttan, the winner of the Centennial Flame Research Award, who will tell us a little bit about the award and what she has written. Then we will go back to, I hope, a threaded conversation in terms of what the truly wonderful Bill and Kevin have done here regarding the questions they need answered in order to go forward in their work and our deliberation in terms of going out to Canadians.

So Gerard, and then Alison.

Mr. Gerard Yetman: Thank you. I have a comment and a recommendation in follow-up to a comment Mr. Crawford made earlier in regard to research. I'm quite surprised to see the lack of linkages between health research and financial research that's carried on within CPP.

Earlier, Madam Chair, you mentioned what's happening to these people and why the rise and fall in the early 1990s. I'm just thinking, from the HIV perspective, if we look at the health data during those periods of time, from 1990 to 1995, we had over 20,000 Canadians diagnosed with HIV. Between 1990, 1994, and 1998, those numbers dramatically changed, basically due to a very high rate of death during that time. As well, we saw new medications come on stream that extended life.

As a result of that, we saw a big fluctuation within the community, and certainly we must have seen a fluctuation in the numbers on CPP. That was also the period of time in which, because of the high cost of drugs, a number of people had to come off CPP to get provincial benefits to qualify for drug plans.

For example, if we look at the province of Ontario, in 1998 the average cost of drug therapy for one individual was over $10,000. For 1998, it cost the province of Ontario $62 million to meet the needs of people living with HIV/AIDS. People had to come off a federal plan to go to a provincial plan.

So certainly if we're going to make recommendations and try to bring reform into the CPP, we must take into research all of the disease-based groups, because numbers like this and research that has been done in the different areas, such as the work of CWGHR, the rehabilitation group, and the Canadian AIDS Society, who have done studies directly on the impact of CPP--which I will leave for the commission--have very far-reaching financial implications for the future and how CPP is going to continue to serve Canadians.

Thank you.

Á (1150)

The Chair: Thanks very much.

Alison.

Ms. Alison Schmidt: Thank you very much.

I'm someone who receives over a hundred calls a month from individuals who have been denied disability benefits from CPP and are in the appeals process. I've been doing this now for four and a half years, and I've recouped approximately $750,000 in arrears payments for average, disabled Canadians. Most individuals who call me do have a legitimate claim. I'm not a miracle worker, and I want to know or have some discussion about why it is necessary for average Canadians to endure such hardships to receive a benefit they're entitled to receive.

The Chair: I agree.

Of the people who approach you, what percentage of cases are you able to resolve?

Ms. Alison Schmidt: As I said, in the last four years I think my total is up to about $781,000 in arrears payments I have recouped sitting in my basement in Saskatchewan. The majority of cases, I would say approximately 70% to 75%, can be resolved. At the HRDC review tribunal level, most people have dreadful times succeeding in their appeals. Usually it is most successful when the individuals are able to appear in person in front of a panel that is able to assess their credibility and hear about the problems or limitations their disability has wreaked on their lives.

Sometimes I'm able to get doctors to attend, but there's a large level of frustration in the medical community. They ask, how come adjudicators are not listening to their letters? I've had one psychiatrist who wrote nine letters on behalf of a claimant who was actually a United Church minister. He had bipolar depression and was a very sick man, and he had to go through the review tribunal process and disclose parts of his life that were extremely personal and very embarrassing to him before he could have his case resolved.

Probably the largest percentage of my client load consists of individuals in the 55- to 60-year-old age bracket who were done a dreadful disservice by the rescinding of the older worker policies. I have people with very poor literacy levels who are unable to even complete the claim applications. I have people who are totally unable to even launch an appeal. They have absolutely no idea of what information to collect. They are bewildered by the whole process, and they have nowhere to turn. I receive these calls from all over the country, so there's a definite need for information and assistance.

The Chair: Neil, do you have an answer to that question?

Mr. Neil Pierce: I don't know if I can answer that question, but maybe I can pick up on a question you asked Deanna from the MS Society: what advice would we have for HRDC? I'll answer with a comment and a recommendation.

My comments deal more with our population of Canadians with spinal cord injuries, who work so hard to get on disability. It's becoming more limiting now for lower-level paraplegia and incomplete injuries. Our organization believes that disability for our population is a point in a person's life and that we should put equal emphasis on promoting people's abilities. I'm thinking of Wolfgang's comment early on that vocational rehabilitation has to start very early in the process.

What I or our association would recommend is that we move to a variable rate program so a person can work at any point in their life without the fear of losing income support. The security of benefits is critical for people with catastrophic injuries, whose life really depends on that security of benefits in some cases for them to be able to pay for life-saving medications. Very often, when you go to work, you don't necessarily always qualify for some of these benefit programs.

I think we should do away with rapid reinstatement, as much as it's a real improvement over past systems, because rapid reinstatement only provides security of benefits for a brief period of time. While that's an improvement over the past, a variable rate program would provide that security of benefits at whatever point in a person's life. Then if that person goes back to work tomorrow, works for a while, and goes off one or two years down the road, they can go back to their benefits without having to go through all of the readjudication.

Some people have even suggested that the variable rate program might just as easily work within the existing employment insurance program, which may also help to increase efficiencies and save some moneys so the people who can't work have permanent security of benefits.

Á (1155)

The Chair: That's very interesting.

Mr. Ashdown.

Mr. William Ashdown: Thank you, Madam Chair.

First of all, I would like to express some thanks to Alison Schmidt who brought up some of the issues that I was going to bring up, and I appreciate that.

One thing that concerns me in assisting people to find a disability program they can apply for, and to assist them through the process, is the fact that there is so little recognition of any mental illness as a disabling illness. As Francine Knoops said earlier today, the World Health Organization now recognizes that of the top ten disabling illnesses on the planet, four are psychiatric in nature.

Yet we've found on the ground that the definitions of disability, of what constitutes disability, differ tremendously. For instance, the WHO definition is certainly not that one that is used by Revenue Canada, or the CCRA, or whatever the new name is, I am afraid. It also does not appear to be the definition that is in vogue at HRDC.

We have a real problem with this. Not only do we have a population that is initially very sick and for whom it's very hard to access these benefits in the first place, but when you have this shifting base on which they have to work, it makes things even more difficult. I have had endless unpleasant experiences in trying to explain to somebody that, no, the Government of Canada does not believe you are disabled, even though perhaps your private insurer might, or Workers' Compensation might.

It has been summed up to me on a number of occasions, by a variety of people, who essentially have said the same thing: “See, I'm so crazy even the blank-blank Government of Canada doesn't think I apply for anything.” This is somewhat amusing, except that there were at least two incidents over the last two years where those particular case files were closed because of suicide. It becomes a rather terminal issue for some of the people I deal with.

That to me underlines the need for a much greater degree of recognition from the staff of HRDC on mental illness as disabling illnesses. And we need to know what steps HRDC are taking to acquaint their staff with them, and to bring their staff up to date to ensure that their education and awareness levels remain at that high level, if you will.

The Chair: Linda?

Yes.

Ms. Wendy Steinberg: Thank you. I'll just follow up where Bill Ashdown left off.

I represent the Canadian Mental Health Association. We hear from mental health consumers nationwide. For several years, I managed a national employment initiative to try to get persons with psychiatric disabilities back into the workplace. One of the number one barriers, aside from the social stigma associated with mental illness, was the inflexibility of income security systems, with CPP disability being included in those.

So certainly, what we've been hearing around the table about recognizing health, having a system that responds to it and the fluctuating ability to work, is certainly paramount for the people on whose behalf we work. To echo the point Bill Ashdown expressed very well, the current system doesn't take into account the realities of living with a serious mental illness.

There have been a lot of advances over the last 30 years or so since this initial legislation came into being, advances in psychopharmacology and a greater shift toward community supports and services, so now most people with a serious mental illness can work. They are capable of working to some degree, often on a part-time basis and in a flexible employment setting.

So I think the program starts right off with a premise that is often false--that a person is incapable of working at all. This really doesn't fit our group. It doesn't seem to work. It may have worked 30 years ago, but there have been a lot of medical advances since then, and certainly a shift in social thinking.

We would advocate for the kind of partial or reduced benefits program that we've being talking about as, rather than an all-or-nothing approach, an approach that can look at the grey areas Sherri Torjman referred to, rather than looking the unique situations of these people in black and white terms.

There are so many issues that don't fit our population--the definition of disability; the contribution requirements, given our population's often limited or sporadic attachment to the workforce that results from being in and out of hospital; and the discrimination that people experience trying to get back into the workplace. There are a host of issues, but what would benefit our group the most would be a system where there is a recognition of work potential.

I think there's a differentiation to be made between the ability to work and the ability to support oneself. Sometimes there is definitely the ability to work there; it just may not be substantial enough to provide an adequate income. And I don't think we should equate the ability to work with the ability to secure an adequate income.

That's what we understand the social safety net to be there for, and it seems significant that more and more people we speak to continue to fall through it.

Â (1200)

The Chair: So would you support, then, the question asked physicians on the form, “Is this person able to support himself?”

Ms. Wendy Steinberg: Yes. That would be more appropriate than asking, “Can this person work at all?”, which seems to be an inappropriate measure.

The Chair: The order now is David and then Cam.

Mr. Dave MacKenzie: First of all, I want to tell you that your sound system leaves a lot to be desired. I have a very little problem with hearing, and half of the people here don't speak very loudly. It's only been a mumble to me. I have heard absolutely half of nothing from what was being said here and to this point--

The Chair: David, stop right there. We asked at the beginning if anyone wanted one of these devices because they do English, too, and the sound in here isn't very good. Mike's going to get you one of these, okay? I wish you'd indicated the problem earlier because it is one of the problems with this particular room.

Mr. Dave MacKenzie: I did hear something about some decline in applicants at some times, which is due to the fact that some applicants get scared away by the disability decision-makers at CPP. For example, they send out such things as six-page doctors' credentials to a person with a grade five or a grade six education, requesting they go before them. They don't have the funds to hire a lawyer.

I've had a fellow coming to me and absolutely crying on the phone that he couldn't go because he was scared. The CPP sent him a six-page letter of his doctor's credentials, a doctor who was going to question him before the board. These sorts of things have to stop. They are scare tactics. They're witch-hunts, or whatever you want to call them. But they are CPP decision-makers who are doing these things.

Â (1205)

The Chair: Does it actually put somebody off even applying to begin with?

Mr. Dave MacKenzie: When people are applying to begin with, they do these things. They're scare tactics. People don't realize that some people out there--or half of the people out there--with only a grade five or a grade six education can't even read right or don't understand what they read. I'm going to tell you it's a pretty heartfelt feeling when these people come to me at different times and ask me, “What do I do? These people are intimidating me?” They send out a letter and say it's an informal panel you're going to be before. Whether it's informal or not, these people are terrified to death. Some of them are up all night with scared diarrhea and everything. They can't cope with the facts. When they go before these boards, they're terrified. I've had people before them who have balled and cried, and everything else.

The CPP doesn't take into consideration some of the factors involved. People like the one I told you about...this fellow right here applied in 1997, but it took until May 2002 before they rendered a decision. He had his hearing on October 18, 2000. You know what I mean? What's this guy going to do? Starve to death? Die? Commit suicide? Perhaps that's what they're looking for. Perhaps that's why there is a decline.

The Chair: Well, I think our job here is to assume that at some level the policy intent is a positive one. But the feelings people have about the interface with the system are absolutely genuine. When trying to look at administration or at whatever the exemplary policy we want to have, we have to make sure they feel someone cares.

I think this is what Sue and the people from the department are hoping to figure out. How does one make it feel different from a witch-hunt or something set up to fail? If it feels that way, then it's not working. It's the way I felt in my office as a family doctor, with people up all night worrying they were going to the tribunal or that they were going places. When I went to the training session the commissioner ran in July last year, the intent of the whole workshop was to try to get the people on these tribunals to understand the client's perspective, and to let the clients understand why they were releasing the information they turned down earlier and why they were trying to change it, such that it was a more equal playing field. But as you say, if you get a six-page letter that is not in plain language, with some doctor's credentials on it, and which really doesn't seem relevant to whether your case is going to be heard, it's somewhat of an uneven playing ground by definition.

So thank you for sharing this and keeping us honest in terms of what we think we're doing versus the way it feels to people.

Cam, do you have some suggestions to add?

Mr. Cam Crawford: I don't have suggestions on it. I think anyone would agree a system that feels like it cares is better than one that feels hostile.

What I was hoping to do is to provide three points as general context. Internationally, there's work going on with disability support and labour market programs. Canada ranks very low in terms of OECD countries in overall expenditure on the contributory disability program. It's one of the lowest in the OECD countries if you look at programs like the CPP in other countries. The fiscal battle, at least internationally, I think has been won. There may even be an argument for opening it up.

The second thing is, internationally, I think what's going to come out of some of the research is there will be a fairly strong recommendation to de-link the employability criterion with eligibility for the disability benefit. It has been an international experience that the approach creates an all-or-nothing trap with all kinds of perverse incentives for people not to move into the labour market. It's quite widely experienced now. It is common sense to de-link the processes.

The third point was an issue I haven't heard put on the table. There certainly have been a lot of issues put on the table. It is on people who are providing informal support for a family member who becomes disabled or perhaps is born disabled. We know from the review of Workers' Compensation information that people who are in the “helping professions”, i.e. people who are working in hospitals, have very high levels of disability compared with other sectors of the industrial economy. It's because of back injuries and all kinds of other things that happen to people who are providing informal support.

Less well known is that people outside of the labour force who are providing informal support to family members also have fairly high levels of disability. It can be because they've sustained the disability as a result of providing help to the family member who has become disabled.

If the person, typically a woman, removes herself from the labour force to help a spouse who became disabled in an industrial accident, and then as a result, three years or four years down the road, becomes disabled herself, she can find herself disqualified from the CPP disability benefit.

As an issue to put on the table, there's a whole other group of people who are providing incredibly valuable support service with enormous economic value to Canadian society. Because of the rules, they may find themselves completely disqualified from the disability pension, or they don't go into the labour force because they feel the need to provide support, and they may also find themselves disqualified from a retirement pension.

This is to open up the box a little bit.

Â (1210)

The Chair: Do I go over your homework before we let you have 20 minutes for lunch? What do you think?

Bill, are you going to take us through this?

We'll come back quickly at 12:30 and have the presentation from Marg Ruttan. We'll carry on until two o'clock, if it's okay.

Do you want to, or do you want to do it after lunch?

Mr. Bill Young (Committee Researcher): We can do it now.

The Chair: Yes, I'd rather you do it now.

Mr. Bill Young: Okay. Some of the issues we thought could be usefully dealt with in the second part of this, after lunch, would be the issues of eligibility and definition. What should the criteria be? How can we accommodate periodic diseases and new diseases? Are partial benefits a reasonable alternative? What should be the place of vocational rehabilitation?

The other set would have to do with integration. How can we better integrate CPP disability with other publicly funded income support programs and private insurance for persons whose disabilities prevent them from maintaining regular employment? How often do people who receive CPP disability lose their eligibility for disability-related supports and services? Is the provision of support something that CPP should address?

Finally, on the financing issue, should changes to eligibility criteria for Canada Pension Plan disability be accompanied by changes to the way CPP contributions are calculated and accounted for?

I think, as Sherri mentioned, there is the implication for financing that any of the changes would potentially have. Would it be practical or useful to separate CPP disability contributions from CPP retirement benefit contributions?

The Chair: So you'll have all the answers in 20 minutes if we feed you? Is that right?

We would also like to send these questions back out after, so that you and your organizations can think about them and send answers back to us. We may have some more questions by the end of the morning, but it's a beginning.

Then I guess we will place Sherri's short-term, medium-term, and long-term lenses on that, so as a committee we can recommend--or ask Canadians--how to move this together in the short term, medium term, and long term.

As some of you have heard me say before, on almost any topic in Canada, what is the most important issue facing women; what's the most important issue facing the disabled? It's that almost everything we care about crosses four levels of government and resides in at least three government departments. If you can help us solve this, we will be well on our way to being the best country in the world.

As we break for lunch, I welcome Laurie Beachell, who you all know, and Mary Ennis. You will have to do all the hard work in the second half.

Â (1215)

Mr. Laurie Beachell (National Coordinator, Council of Canadians with Disabilities): We just left your colleagues at the Standing Committee on Finance. Just for your information, in the two-hour discussion with the Standing Committee on Finance and the questions that followed, CPP disability benefits and the disability tax credit comprised at least one-third of the questions asked, following the discussion, from all parties--Alliance, Bloc, and Liberal.

The Chair: That's good. It's a good job I wasn't there. it could have been 100%.

We'll just suspend for 20 minutes while you pick up some lunch.

Â (1217)

Â (1252)

The Chair: It is now my distinct pleasure to have our half-time treat, which is the Centennial Flame Research Award for persons with disabilities. I don't know if you all know that the Centennial Flame in front of the House of Commons receives little donations--and we've done a lot better since we've had toonies. The fountain there collects between $3,000 and $4,000 a year, and by an act of Parliament we award the collection plate to a recipient. The recipient has one year to use the money to prepare a report focusing on the public achievements of one or more disabled Canadians.

This award, which amounts to $3,000 for 2002, comes from the money collected from the Centennial Flame fountain, plus any private or corporate donations made to the CFRA fund. Any Canadian citizen with a disability who wishes to apply for the award submits an outline of their proposed research project, aimed at publicizing the achievements of a Canadian or Canadians with disabilities, to the clerk of our standing committee, with a letter of support.

It is my distinct pleasure to say that the subcommittee on persons with disabilities has chosen Marg Ruttan from Edson, Alberta. She will give us her abbreviated report on disabled Canadian Darlene Long. We will post the rest on the website.

Welcome, and congratulations.

Ms. Marg Ruttan (Recipient, Centennial Flame Research Award): Thank you.

It really was a pleasure to be able to write a report about Darlene Long. I came to know Darlene through discovering that I myself had the same condition that she has, and that condition is called Chiari I. It's very uncommon.

As I sat listening to you discuss Canadians with disabilities this morning, one of the things I realized you hadn't touched upon was disabilities that are very uncommon. Chiari I is something that probably only about 250 to 300 Canadians have, and there are many other conditions and diseases like it that are very uncommon. They really seem to fall through the cracks because they don't have people coming out and sitting during discussions like this, such as the MS committee or representatives for people with mental illnesses. All those kinds of things so often fall through the cracks.

But I want to tell you a little bit about Darlene Long and a little bit about Chiari I. Darlene started off being a nurse, and she was a nurse for many years. Her friends used to call her “Elbows” because she used to walk down the hallways with her elbow up against the wall all the time. She did that because she needed that for balance, because one of the problems that people with Chiari I face is a balance problem. That went on for quite a long time, and then she took a tumble.

Often with this condition it's aggravated by lifting something heavy or taking a fall or anything like that. She started to lose function very rapidly. She ended up not being able to walk and not being able to swallow. They did some surgery on her, and over the past number of years she's had several surgeries. Her condition, unfortunately, hasn't improved greatly. The one thing that has improved is that at one time her optic nerves had been severely impaired. Those have since come back. With surgery they've been able to bring back part of her eyesight at least.

Because Darlene was part of the medical profession, she knew how to go about doing some research on the condition, and she discovered that there really was very little information available. She finally found a doctor down in New York who was consistently dealing with this problem. She started to work with him, and along with three Americans, she created a website back in 1995-96 that dealt with the condition and dealt with some of the issues around the condition.

Through that website there have been over 1,500 people now who have been helped worldwide, as far away as Australia, many in the United States, and several in Canada, and certainly I'm one of those. This is just because we've been able to come up with the information from this website and find where there are doctors who know about the condition and who are working to find new ways to help deal with it. It has been extremely helpful.

During all this time she's been working with this website and helping to develop it, and also helping to develop the mail list we have, where you can send an e-mail and ask a question and get some information. They don't provide medical information, but it's a moral support thing.

When I first started to have this problem and it became severe, they told me I had an inner ear infection. Then they told me I was going through menopause, and then they told me I was depressed. By then I was depressed, because it was two and half years later and I thought I was going out of my mind. I really did, because things I could do perfectly fine, all of a sudden I couldn't do. I couldn't walk down the hall. I used to have to hold on to the walls. Breathing took all the energy I had. In that respect it's very similar to MS; it can be very fatiguing. You really think you're going out of your head; you think you're losing it.

My condition was really only diagnosed accidentally. They were looking for MS, and that was when they found it with the MRI. The only way it is diagnosed is with an MRI. So unless they're looking for something like MS and they do an MRI, they're not likely to find it.

Â (1255)

It's very difficult and you feel very alone, and you feel maybe you really are losing it. Maybe you really are going nuts. Then when you find out what the problem is, just to know is such a relief.

The contribution she has made is phenomenal, to all of us. I just needed to know that I'm not losing my head. I'm perfectly sane. I have this stupid condition. At least I know now I can deal with it. Knowing what it is helps you to be able to adjust your lifestyle, so that you can accommodate it and you can get back as much of your life as humanly possible. So the contribution she has made is phenomenal in that respect.

I know there are many other Canadians with other disabilities who have made similar contributions for people and from the same kind of thing happening in their lives. Something came up and they didn't know what it was. They went looking for information for themselves and ended up sharing it with others. It has just been a real help for people.

Just briefly, I want to tell you a little bit about Chiari I. Chiari I is a condition where actually you just have too many brains. That's the problem. The back part of your skull doesn't develop fully, and consequently part of the brain pushes down through where the brain stem is. Because that's where your whole body function takes place right in there, it can affect all kinds of things. It can affect your balance; it can affect your vision. Many people with Chiari I end up on a G-tube. They can't swallow, so they end up having to be fed through a tube. It can affect your vision really badly. It can affect your ability to recall, your ability to write, your ability to say words.

One of my worst problems is that it affects the control of your body temperature. For years I've been a person who has always minded the heat and I was always overly heated. I thought for a while I was just hot stuff, but that wasn't the case. It was really a challenge, because in wintertime I'd walk around with a sweatshirt on all winter. That's how I dressed, and everybody would say, “Where's your coat?” I got so sick of telling people, “Mind your own business.” But it really affects my temperature control, and it does that to a lot of people.

I really appreciate your room here today, by the way. This is about the coolest place I've been in for a while. It's great.

So Chiari I can be very debilitating. It can kill you. It doesn't often, but it can. If your brain slumps and pushes down much farther than it already is, it can kill you. You live with that, but lots of things can do that, so that to me is not the big issue. The issue is finding a way to live your life to the maximum and dealing with what you're challenged with in the meantime.

For me, the key to that, and I believe for any of you who are here today from other committees and from other organizations, is knowing what the problem is. Once you know, then you can start to find solutions. But until you know what the problem is, it's like you're in this fog and you're walking around in the dark. That to me is so vital--to know what the problem is.

You spoke about many things, as I have listened this morning in your committee. You spoke about mental health, about MS, and about people with disabilities having problems getting CPP. There are so many issues. I see what you're doing as very macro. I see what I'm presenting as very micro--just one very tiny aspect of that. But you have a great challenge ahead of you, and I hope one of the things you will also consider in that challenge is the whole concept of those diseases and conditions that are not well known and that don't get a lot of attention because there aren't a whole lot of people with them. Those kinds of people need some assistance as well.

I thank you very much for the opportunity to create the report and to share it with you.

· (1300)

The Chair: Thank you very much on behalf of all of us.

We will break at 2 o'clock. Anybody who wants to can come with us to the Centennial Flame to have our picture taken. I think it would be better if we had the Centennial Flame in there.

Part of our little job on this tiny, perfect committee is having the stories out there. The rare conditions don't get the notoriety or the research dollars, and I think it is our privilege to have you here with your story so that we can do our tiny part to move the agenda of the rarer conditions. So thank you very much for coming.

We need to go back to work here. I would like to start by making sure you understand that in all of our deliberations, one of the lenses that we're hoping you'll work with us on is this going out to Canadians and to the stakeholders to ask questions. So what we want you all to do is to have your Library of Parliament or your member of Parliament, your député hat on and to think about this. If you were getting to ask the questions of the physicians of this country or of the insurance industry in this country or of the workers' compensation boards of this country, what questions would you be asking of Canadians with a CPP disability pension, or who are worried they might lose it, or who are too sick to appeal? What kinds of questions do you think we should be asking?

We would hope that all of you would participate with us in this next online chapter, through the website and through communications and through correspondence with Mike, Bill, and Kevin. And we will try to figure out how we as members of the committee can make sure the next chapter of this very exciting step can bring us even more information.

Can we even find out a little about some of the narratives around some of the questions we're asking about? For instance, what happens to somebody who is cut off from CPP disability? George knows some of the difficulties, particularly with the conditions where the lab tests continue to be negative, but this person knows they're not well and knows they can't work and they would love to be working. I think that is the safety net we are hoping for, for all Canadians.

We welcome the truly wonderful Wendy Lill, who is the conscience of this committee. She was struggling with the Broadcasting Act this morning. Isn't that right?

We will welcome all of the input in whatever form, even if we don't get to all of those details today in terms of these questions.

Now, Stephanie, are you ready for your big question yet, seeing that I skipped you on the speakers' list earlier?

· (1305)

Ms. Stephanie Nixon: Certainly. It would be a lovely opportunity.

It was really a comment before lunch, but I'll try to spin it into an answer to your last question, which had to do with what you would ask people if you were going out to them.

I think we all know that CPP disability does serve some people living with disabilities extremely well. So the question is this. Who is it who is living with disabilities who's not being served well? There's been some discussion around how we should really go to the different diagnosis groups to ask them about their specific expertise. We've heard some really compelling arguments, particularly around psychiatric, psychological, and mental health perspectives.

I'd like to propose that while going to specific diagnosis groups is one way in, you can also think about it in terms of the disability itself. What are the characteristics of a disability that actually may be common amongst groups?

Being here representing views of people living with HIV, I can tell you that everything I heard you say is completely salient for the people living with HIV who have been talking to us about their policy concerns around CPP disability.

I would like to build on Marg's comment that if we can name the problem, then we can start to deal with it. And I don't think this is new to anyone, including all the people who work in CPP. They already know this. I would just like to name it, to articulate it. One of the problems or challenges for CPP disability is serving people with disabilities that are episodic, unpredictable, lifelong, and invisible. That captures some of the diagnosis groups, I think, that are here today.

The Chair: I would also like to know if there are any groups that have some inventory of tools for how you measure things. I think fatigue is one of the most disabling conditions, and yet we don't measure it particularly well. Some people whom I used to coach to testify or describe, even in their narrative tended to really underestimate how tired they were and how that had been making things impossible. Whether it's hepatitis C, or AIDS, or MS, or chronic fatigue, there are tools we could or should have to better define it in terms, as we do with depression.

I was saying at the break that I had a patient with three different cancer primaries who got turned down, because really each one on its own.... But the underlying criterion was just this debilitating fatigue that I felt was part of her piss-poor immune system, which also meant she was a sitting duck for another cancer or whatever.

We also need to figure out, can the CIHR help us with some things? Are there some questions we should be putting to the multidisciplinary health research community to help us do this job better in the long term, as to what we would want to know about some of these things the diseases have in common, that are actually part and parcel of whether particular persons are able to support themselves or not? I would love any help or any examples, because so often our job as parliamentarians is to take things that are working well in this sector and move them to the other. I would love your help in any experience.

The number one question on the hit parade is eligibility and definition. Are there some comments on that? If we go over Kevin's list--eligibility, vocational rehab and partial benefits, integration, supports and services, and financing--I think we probably need to make sure we don't miss financing, because if this is all being driven in some sort of cost-containment model of what we can afford, or that it mustn't take from the retirement plan, or some of these things I think we heard at the preliminary hearing, it obviously ends up not an optimal program. But also, if everything is being done such that so-and-so won't claw back or will claw back, or the insurance premiums don't go up, or.... We need to name all of those tunes as well.

Can you help me with the definition? Should the definition be the same for the disability tax credit, CPP, and Workers' Compensation? There's this song we hear, saying, “How come the definition is different?” Is it that we keep using the word “disability” when we should be talking about “incapacity” or some other concept? Should we find a different word to define, or should we have a common definition, or should we spend an hour and a half every day explaining to people why there is a different definition depending on the program?

Laurie.

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Mr. Laurie Beachell: The issue of definition of disability is the most complex issue within our whole community of concerns. We have tried at times to design a medical assessment to use, a diagnosis that identifies a medical condition. We have at times used a functional impairment model that looks at how the diagnosis impacts on people's daily lives. We have moved away from a medical construct to a more social model, one of understanding disability as the barrier it presents for people within their environment.

I would certainly not advocate a single definition of disability for all programming needs. Disability has to be defined in relation to the program. For example, we would not recommend that the definition of disability within the Employment Equity Act be the same as for the Canada Pension Plan. When we talk about employment, we're talking about employment barriers. When we talk about Canada Pension Plan disability benefits, we're talking about income replacement for those who were in the workforce but who are presently unable to work full-time or part-time because of a disability.

We talk differently when we talk about the tax system. There we're talking about those persons with disability who have additional costs related to their disability that can be offset through a tax system.

It is extremely complex, and the problem is that everyone seeks a silver bullet in this definition, yet there is no silver bullet in the definition of disability. The range of function, the range of barriers, the range of what one person who uses a wheelchair can do versus another, and the range of what one person who has a mental handicap can do versus another are so great that the barriers are very individualized.

All we can do is come back to some principle that the models must be empowering for people with disability. If, for example, the physicians' guide around some of this had been tested with people with disabilities in a focus group--I don't think it was, but I may be wrong on that--some of the problems we're finding would have been solved. We could have created some solutions and a better understanding by testing that with people with disabilities.

It's just like the disability tax credit form. We could do a better job if we sat down and talked about it before we changed the form. It's the same thing with the physicians' guide around CPP. I think the community does have answers to this, and I think the community can provide ways and means of dealing with this.

This may be a little outrageous, but there is a disability for every body part, and there is an organization for every disease and body part that exists, right? You are going to have a hard time making a list. What you need to look at is the impact upon individuals, and frankly, a medically driven system to determine that is not necessarily the best system. We all know that doctors--with all due respect--serve a wonderful purpose, but I'm sure they would rather spend their time dealing with people's health-related needs rather than decide whether someone should get a pension, a parking pass, or a tax credit.

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The Chair: Or a driver's licence.

Mr. Laurie Beachell: Or a driver's licence. It is a bad system, and a physician is a bad gatekeeper for the determination of need. Yes, there will be input from the medical community, but there will be need for another gatekeeper in this and some determination process that moves it out of the medical realm into a realm that looks at barriers to participation versus just saying, I'm a quadriplegic who has this, this, or this condition.

I don't think there are any easy answers on the definition, and going down the road to one single definition will not serve us well.

The Chair: You've answered as to both definition and eligibility in this. I think that's what we heard on the DTC study, that the doctors really aren't happy with this, particularly the only doctor in a small town, who is actually the person who green-lights something or not. It is a huge stress on that doctor-patient relationship, and they are saying that there has to be another way. It is about them doing the medical evaluation.

What do our rehab folks think? Wouldn't you be better at this than the doctors?

Ms. Donna Klaiman: May I respond to that?

The Chair: Yes.

Ms. Donna Klaiman: I have a few thoughts about that, and I'd like to pick up on two issues that you've raised.

One is that we need a definition that deals with barriers to participating, and we need a definition that also responds to major loss and long-term earning potential as opposed to severe prolonged disablement. So I'm kind of straddling between these two, and I'm also thinking about the fact that it does place a huge burden on the medical system to make a determination on someone's level of ability and employability.

I'd like to propose another way of looking at occupation, and that's from an occupational performance model, which is the model that's used by occupational therapists in Canada. We look at everyday life in terms of occupations. Occupations are basically things that people do to look after themselves, including enjoying life, including leisure, work, and the roles that people take on during their lifetime. People need choices over their patterns of occupation.

Perhaps the definition that we use for CPP or any of the other programs needs to include a broader definition so that we're not only looking at activities related to earning a living, but a broader sense of what people need to do and have choice over their patterns of occupation. In looking at this, we believe we will be able to maximize productivity, minimize lifestyle limitations, and prevent more dependency.

Perhaps we have to look at the term “occupational disruption”, rather than the terms “disability” and “prolonged disability”.

Thank you.

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The Chair: Peggy has an idea here.

Ms. Peggy Proctor: [Editor's note: Technical difficulty]

¸ (1400)

The Chair: [Editor's Note: Technical difficulty...when we've lost the social determinant, dignity. Welfare, in terms of well being, sort of lends for really what we're hoping for Canadians.

Cam, you're going to tell us what we need to do.

Mr. Cam Crawford: I can summarize what was said.

But could I just make one comment...[Editor's Note: Technical difficulty] It strikes me that in the discussion of eligibility there are three questions that need to be unravelled.

One, does the person have a functional impairment, a functional limitation...[Editor's Note: Technical difficulty]. There is then another question, and that is, with good-case scenarios, can this person become active in the labour force in some capacity? That is a very different question, and it's a very different person and it's a very different skill set that needs to be brought to bear.

The third question is given the real-time...[Editor's Note: Technical difficulty]

¸ (1410)

[Technical difficulty--Editor]...at the provincial level. Does that result in huge caseloads onto CPP? I'm not going to go into great length in terms of administration, but the basic points that were made was that it doesn't feel like a very friendly system, it doesn't feel like a very efficient system for...[Technical difficulty--Editor]...policed a little bit, and it ought to feel like a more welcoming and supportive system.

There's also a need for better awareness-raising of people who are administering the system, but also a recognition that they're under tremendous strains and stresses of their own, having to manage huge caseloads and the pressure to contain costs. These things all have to be worked out.

Supports and services, financing--we've gone to a five-year contingency reserve. I guess the question begging here is whether that is a good idea. Should it be a bigger reserve? Should we be looking at a higher rate? Currently we're going to cap the contribution requirements after 2003. Can the taxpayer bear more? There are all those questions to be sorted out.

A question that didn't get put on the table is, what are the costs of excluding people from adequate income? Income is the single most important contributing factor to the overall health of people. If we deprive people of secure, decent income, what are the impacts in terms of individual stress, fatigue, overall immune system response, poor physical health, family problems, and in turn increased use on health, social services, mental health programs. Those all have hard costs attached. Are we monitoring those financial implications of short-term chops in program expenditures?

Finally, the general considerations. As you get together and figure out the answers to all those problems, you'll keep in mind Sherri's request that you please recognize that the system currently is based on a good idea, which is that people are universally covered, if they pay into it at least through the labour force. It's portable. You can access what's there everywhere in the country. It's equitable in the sense that at least everybody gets treated the same. That's not to say it's necessarily fair, but it is equitable.

It's indexed to inflation. Actually, I had a question about that. I thought it had been de-indexed, but it should be indexed. That would be the general point. For a period of time, maybe, it was indexed. Un-indexed? For the basic retirement pension, yes.

If you meet the criteria, you're basically eligible. It's not an income security program in the sense that you have to be needs tested. It's not a residual program in the sense that welfare is. So that's a good thing. And there's an appeals process. At least you have access to a complaints process if you feel you've been treated wrongly.

We do need to deal with the weaknesses of the system, and the primary one, I think, is just the whole series of exclusions that happen administratively and based on eligibility criteria.

That's the summary I draw from today's discussion.

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Ms. Wendy Lill (Dartmouth, NDP): I'm going to thank everybody for all the time you've given us today. It won't be the last time we ask you; we're going to ask a great deal more. I think it's an exciting process.

I want to tell you a story about disability, and it's about the Centennial Flame. I was walking out of work two weeks ago, down towards the flame, and I saw a young man jump into the flame and grab a handful of coins and run off. I yelled after him, “Don't do that; that's for persons with disabilities.” As I watched him leave, I saw that he was limping and was staggering, and he didn't look as if he had washed in a whole long time, and I realized there are all sorts of disabilities going on. The guy was probably disabled by drug abuse, by poverty, by lack of self-esteem.

My words hung in the air. I felt like a Pollyanna, and I realized, right there was a very disabled individual who was leaving the Centennial Flame with a little handful of money. It really caused me to think, and think differently, about defining disabilities, and the idea of health and welfare. And we sure haven't been looking after people's welfare at all.

In closing, we have a lot of work to do. I love the idea that we do some radical rethinking and that we have a lot of work to do on the whole idea of accommodating. Generally, the term that kept coming to my mind was that we have to put the effort into understanding what it is a person with disability needs. They're all different, and it takes time. That's the essential challenge, whether it's a child in the school system, or a person who's just been diagnosed with MS, or whatever the situation is: it takes time, and it takes humanity. I'm really glad we're embarking on this project, and thank you so much for your time.

Mr. Laurie Beachell: [Editor's Note: Technical difficulty]...so I just want to say thank you again to the committee. Your ongoing work is tremendously important to it, and your energy is as well.

I will just comment quickly that I missed part of the discussion this morning because we were at Finance for prebudget consultations. But the issue of a program that is self-financing would be that very few Canadians generally see CPP dealing with this challenge, beyond not just understanding our own needs but having a public that will understand our reasoning. [Editor's Note: Technical difficulty...and that's why I would caution in trying to make CPP be the be-all and end-all for what we want. Many of the things we want, frankly, are related to provincial jurisdiction, are related to the disability supports that are so critical for people's ongoing lives. CPP cannot answer all of those questions. The CPP disability program, overall, can be much better, but it will not be a panacea for the issue of people with disabilities in this country, and I don't think we want to create one program that is.

Ms. Peggy Proctor: [Editor's Note: Technical difficulty]

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The Chair: That is correct.

I just want to say, on Laurie's comment, that maybe when we had our briefings around the program, we were led to believe that whatever we decided on CPP disability could not put at risk the retirement program. What Laurie is saying is that maybe if we decided everybody should work until 67, we could afford to do the right thing by the persons with disabilities in this country. I hope this study won't take any hard lines, and that we will look at what actually would be best for all the people of Canada, and their dignity and their full citizenship.

Thank you so much for coming. I think we feel we've had the hors d'oeuvre for the big meal ahead of us, and we hope you'll come back for champagne at the end. Thanks so much.

The meeting is adjourned.