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37th PARLIAMENT, 2nd SESSION

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

EVIDENCE

CONTENTS

Thursday, February 20, 2003

0905

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

Ms. Madeleine Dalphond-Guiral (Laval Centre, BQ)

The Chair

Ms. Madeleine Dalphond-Guiral

The Chair

Ms. Ainsley Chapman (Program Consultant, Canadian AIDS Society)

Mr. Paul Lapierre (Executive Director, Canadian AIDS Society)

Ms. Ainsley Chapman

0910

Mr. Paul Lapierre

0915

The Chair

Ms. Elisabeth Ostiguy (Director of Public Issues, Canadian Mental Health Association)

0920

The Chair

Ms. Deanna Groetzinger (Vice-President, Communications, Multiple Sclerosis Society of Canada)

0925

0930

0935

The Chair

Mr. Peter Goldring (Edmonton Centre-East, Canadian Alliance)

Mr. Paul Lapierre

Mr. Peter Goldring

0940

Ms. Ainsley Chapman

Mr. Paul Lapierre

Mr. Peter Goldring

Mr. Paul Lapierre

Ms. Ainsley Chapman

Mr. Peter Goldring

Ms. Ainsley Chapman

Mr. Peter Goldring

Ms. Elisabeth Ostiguy

Mr. Peter Goldring

0945

The Chair

Ms. Madeleine Dalphond-Guiral

0950

Mme Elisabeth Ostiguy

0955

Ms. Deanna Groetzinger

The Chair

Mr. Tony Tirabassi (Niagara Centre, Lib.)

1000

Mr. Paul Lapierre

The Chair

Ms. Ainsley Chapman

Ms. Wendy Lill (Dartmouth, NDP)

1005

Ms. Elisabeth Ostiguy

The Chair

Ms. Elisabeth Ostiguy

The Chair

Ms. Elisabeth Ostiguy

The Chair

Ms. Deanna Groetzinger

1010

Ms. Ainsley Chapman

Ms. Wendy Lill

Ms. Madeleine Dalphond-Guiral

Ms. Wendy Lill

Ms. Deanna Groetzinger

The Chair

Ms. Deanna Groetzinger

1015

Ms. Wendy Lill

Ms. Deanna Groetzinger

Ms. Elisabeth Ostiguy

Ms. Deanna Groetzinger

Mr. Paul Lapierre

The Chair

1020

Ms. Ainsley Chapman

The Chair

Mr. Peter Goldring

Ms. Deanna Groetzinger

1025

Mr. Peter Goldring

Ms. Deanna Groetzinger

Mr. Peter Goldring

Mr. Paul Lapierre

Mr. Peter Goldring

1030

Ms. Deanna Groetzinger

Mr. Peter Goldring

Ms. Elisabeth Ostiguy

The Chair

CANADA

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

NUMBER 007

2nd SESSION

37th PARLIAMENT

EVIDENCE

Thursday, February 20, 2003

[Recorded by Electronic Apparatus]

¿ (0905)

[English]

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

We are extraordinarily pleased to have you here. I think the issues you've raised with us over the years have in some ways precipitated this study.

Now, because of the budget, I think the committee might need, of course with the committee's direction, about half an hour to deal with what was raised, or not raised, in the budget.

Ms. Madeleine Dalphond-Guiral (Laval Centre, BQ): [Inaudible—Editor]...I'm so happy about that.

The Chair: The kids are okay.

Ms. Madeleine Dalphond-Guiral: Well...

The Chair: I had asked Bill and Kevin to do a little analysis of what was and wasn't in the budget. So if we are speedy in our questions, I'm suggesting that we do this part of the hearing until 10:30, and then we'll have until 11 o'clock to deal in camera with issues related to disabilities and the budget.

Is that... Okay.

We now welcome the Canadian AIDS Society, the Canadian Mental Health Association, and the MS Society.

Is it fair to follow that order? Okay.

Paul Lapierre and Ainsley Chapman from the Canadian AIDS Society.

Ms. Ainsley Chapman (Program Consultant, Canadian AIDS Society): My name is Ainsley Chapman. I'm national programs consultant with the Canadian AIDS Society, and I've been working on workforce and disability issues with CAS.

Paul.

Mr. Paul Lapierre (Executive Director, Canadian AIDS Society): I'm executive director of the Canadian AIDS Society.

Ms. Ainsley Chapman: I'm just going to give a brief overview.

In our brief we've defined HIV to be an episodic disability, so I want to talk briefly about what that means and what it means for the CPP disability plan.

What does it mean to live with HIV? HIV is a virus that weakens the immune system. So what ends up happening is that people with HIV become vulnerable to illness. However, how this manifests is different for each person and depends on a variety of things--for example, each person's immune system, how strong the virus is, side effects....

Unfortunately, the side effects of current HIV treatment, for many people, is the hardest part of living with HIV. Some of the health problems that are associated with HIV are visible. Some of these--for example, pneumonia, cancer--are very clearly visible illnesses that are associated with it. Many of the health problems associated with HIV are invisible and are less clear. These are things like chronic fatigue, chronic diarrhea, and pain. They're less visible, but it's obvious how this can affect someone's ability to work and return to the workforce.

For many people, these symptoms and these illnesses are temporary. They may only be sick for three months, six months, or a year and are interested in returning to the workforce once they feel they're in better health. Unfortunately, living with HIV is unpredictable. We don't know what's next, we don't know what new illness might come on, we don't know when you have to change medication, and we don't know what kinds of side effects are going to be accompanying each new treatment regimen.

What I'd like you to take away from this is that HIV is unpredictable. The illness is unpredictable; the medication and side effects are unpredictable. So as an episodic illness, people with HIV live through periods of health, period of poor health, followed by periods of health. This cycle or these periods are very unpredictable.

What does that mean for the disability plan? Policy needs to be flexible. We really like the direction in which it seems to be going, and I think a lot of our comments and recommendations will resonate with the work you've already done.

The first thing we'd like to look at is how we can change the system to better accommodate episodic illnesses. For many people with HIV, getting onto the program is very simple. The challenge is, once people are on the program and are starting to feel like they're in better health, they're afraid of returning to work because they're afraid of losing their benefits. They want to be able to be sure that their benefits can be reinstated. We'd like to be able to see that people who are approved can move in and out of the system very easily and very quickly.

One of the issues you're looking at is the eligibility requirements. We'd like the program to recognize that HIV is an individual illness and it's experienced differently for every person. Unfortunately, one policy that applies for one person might not be effective for other people, even though they're suffering, even though they're living with the same illness. So I go back to the same principle, that policy should be flexible.

We'd also like the program to recognize that a person's ability to work cannot just be measured by physical evidence, that there are psycho-social factors that are really important and need to be taken into consideration.

HIV is a terminal illness. It's also an illness that is associated with a large amount of stigma and discrimination. A lot of people have lost their jobs, families, and partners because of the stigma attached to the disease. This is another invisible part of living with HIV that clearly affects someone's ability to be successful in the workforce.

We'd like to see the program re-examine the return-to-work process. There are a lot of factors that are external to the disability that play a large role in determining whether someone is going to be successful in the workforce. Some of these factors are discrimination, the capacity of the workforce to respond to disabilities, and cultural and other factors, such as language, literacy, education, skills, and work history.

Unfortunately, it will be easier for some people to find employment, to remain in their employment, to return to the workforce, than others, and these have to do with factors that aren't directly related to their own illness.

We'd also like to see the program support HIV and anti-discrimination education that targets the workforce. People are losing their jobs and people are not being hired because employers know they're HIV positive. I think this is an important component. Part of it is learning how to manage your disease, but part of it is, when you're looking for employment, there is a certain climate that's not encouraging to people to seek work.

¿ (0910)

We'd also like to see the program increase the trial period. Currently, the trial period when you go back to work is three months. We don't feel that is enough time for someone to evaluate their new work environment, to be able to evaluate the skills that are going to be required, whether this is a high-stress job, as well as what kind of physical capacity is going to be required of them. This is especially important for people who have been out of the workforce for a number of years. Currently, many people living with HIV have been on disability for five to ten years, and to return to the workplace is going to take quite a bit of training and rehabilitation.

We'd also like to see the program provide benefits to individuals who return to work part-time. For many people both their short-term and long-term working capacity is 15 hours a week, not 37 1/2. This is an opportunity to allow people to return to the workforce and contribute back to the program while they're working.

Earlier we talked about the budget. In terms of next steps and future directions, we recognize that some of the recommendations in our brief will have costs attached to them, but we also feel that a lot of them provide an opportunity for cost recovery. We feel that there's not enough research done that effectively reflects what kinds of costs and benefits will be associated with recommendations.

We would like to propose a number of pilot projects that could incorporate these recommendations and evaluate the costs and benefits associated with them. We at CAS, along with the Canadian Working Group on HIV Rehabilitation and a number of HIV-positive individuals, would be more than interested to work with you to formulate a model that could be used for a pilot project. We encourage you to contact us to look at that.

I'm going to pass it on to Paul Lapierre.

Mr. Paul Lapierre: Ainsley asked me to provide the conclusion. Instead of doing a traditional conclusion and restating what was said, I will take the conclusion from different messages.

I would like to restate how happy we are to be here today. If you look at the UN GA Declaration of Commitment on HIV/AIDS, along with a commitment made to involve various departments when it comes to HIV and AIDS, it is an honour, and I think we should acknowledge the work of the subcommittee to allow us to come and talk about HIV and AIDS.

HIV and AIDS is still a problem in our country, where 50,000 Canadians are infected. Maybe 20,000 others are, but they don't know about it because they don't get tested. There's the potential for a dramatic increase in new infections.

So we need to look at various components. HIV is something we look at from a health perspective. There's a need for education and awareness. HIV is still preventable. Nevertheless, some people look at HIV as being a death sentence. That is still the case. What we're finding is that because of the medication, the new treatments, and the research, the death sentence is not happening in six months. In some cases people have been living positively, using a figure of speech, for about 20 years. Many of them are looking forward to re-entering the workforce. But the threat of not being secure or of losing your income is very challenging. So what we would be happy to see and what we are recommending is that the CPP disability program be flexible in order to meet the needs of the HIV-infected and -affected communities.

In closing, I would like to say thank you.

I would like to put to you the challenge to come up with a program that will meet the needs of our Canadian citizens, but also to think outside of the box. That's the new way of doing business.

We met with the health minister way back in September, and she said to us that it is a challenge within her department. We're saying that because of the social component of HIV and AIDS, we have to involve various departments. That is why we're so glad to be here today. We'll be appearing before the justice committee in a couple of weeks, and we spoke with the aboriginal committee last week. We need to increase a strong partnership. That is what we're trying to accomplish.

Once again, merci.

¿ (0915)

The Chair: Thank you very much.

We'll hear from Elisabeth next.

Ms. Elisabeth Ostiguy (Director of Public Issues, Canadian Mental Health Association): Good day.

I almost don't need to go through this. I could say “ditto” to what my compatriots here have said, but I will, for the record, share my thoughts.

Madam Chair and members of the subcommittee, thank you for this opportunity for the Canadian Mental Health Association to present its views and concerns about the present Canadian Pension Plan disability program.

Let me first congratulate the subcommittee on its work and final report on the disability tax credit. Your findings were a true reflection of the views of Canadians on much-needed reforms in this area.

In June 2001 this committee found that the CPP disability program does not recognize the fundamental realities of many people who live with a disability. It does not have human measures in place to provide prompt service. It does not adequately address the issues of cyclical and degenerative diseases, and it does not address the question of mental illness and disability in an appropriate fashion. Based on its many years of working firsthand with Canadians with mental illness, the CMHA believes this statement truly reflects today's realities.

[Translation]

One of the main problems with the system is that disability benefits are based on the capacity of a person to work. This policy was developed in the 60's in a social context that did not consider disabled people as active members of the active population. With the recent technological breakthroughs and medical progress in the treatment of diseases and injuries, disabled people are increasingly active in society. They pursue higher education and are able to work.

[English]

Most persons with serious mental illness are capable of working to some degree, often on a part-time basis within a flexible employment setting. However, in order to qualify for disability benefits, one must accept the designation of permanently unemployable, where one must declare him or herself as entirely incapable of pursuing any employment on a regular basis.

CPP disability bases its assessment on functional ability. Essentially an all-or-nothing approach has been adopted whereby an individual's work potential is virtually ignored.

¿ (0920)

[Translation]

It is important to distinguish between the inability to work and the incapacity to support oneself. People suffering from severe mental disease are sometimes able to accomplish certain tasks on a part-time basis and with flexible hours. This does not necessarily mean they are able to support themselves without any other form of assistance.

[English]

A Manitoban with mental illness stated that CPP disability puts individuals in a position of having to paint themselves in the worst possible light, define themselves in the most negative way, just to convince the worker they actually require assistance, and that the entire process is based on pathology rather than recovery.

It is time CPP disability reflects today's circumstances, not those in place more than 30 years ago when it was created. There is a need to recognize that persons with serious mental illness can work, often on a part-time basis. This does not, however, suggest these individuals are necessarily capable of achieving full financial independence, nor should they be penalized for making the effort of trying to make a positive contribution to society.

[Translation]

Since the implementation of the program, the definition of disability has not considered that severe deficiencies may be chronic and recurrent rather than permanent. For the past 35 years, mental health services clients have had to overcome numerous obstacles to be entitled to CPP disability benefits because of the cyclical, occasional, and unpredictable nature of their disease.

[English]

Since disability is equated with permanent unemployability, many individuals on CPP disability are highly reluctant to do anything that even resembles work or the pursuit of employment. For instance, people who are interested in vocational rehabilitation are afraid to make the call to seek information through formal CPP channels because it may trigger a reassessment of their medical condition, resulting in a fear that their benefits could be lost. Some individuals have even been encouraged to participate in rehabilitation measures only to discover later on how difficult it was to get back on CPP disability. Essentially, people are penalized for trying to improve their condition, even if they are not capable of participating in regular work again.

A consumer from Alberta believes that there is the perception out there that the rehabilitation agenda has less to do with rehabilitation and more to do with off-loading people from benefits. Rehabilitation and training do not guarantee employment and therefore should not result in a loss of benefits. Fear of losing one's benefits is often strong enough to prevent consumers from even considering re-entry into the workforce if they become well enough. They feel punished by the system. Being employable, even temporarily, means the loss of the social safety net.

Since Bill C-2 was enacted in January 1998, there has been a 50% reduction in the number of approved CPP disability applications. This figure is likely to be even higher among consumers of mental health services, who tend to have a limited, sporadic attachment to the labour market in response to dealing with the cyclical, recurring nature of their illness.

Many consumers do not even reach the application stage due to a myriad reasons, such as the complexity of rules, language barriers, and a fear around leaving one's apartment to fill out the initial application form.

[Translation]

Many doctors refuse to fill out the forms, and even more do not fully recognize the definition of disability used in the CPP disability benefits program. It is not uncommon that a psychiatrist, after filling out an application form in the best interest of his client, is told that this application was rejected in the initial phase.

The CPP disability benefits program is designed for people who suffer from a severe and long-term disorder. If there is the slightest doubt, the application is rejected. Considering this definition, a psychiatrist must know that, for his patient to be eligible, his prognosis must be as cautious as possible.

Furthermore, medical reports are generally of poor quality. Doctors are not encouraged to justify their conclusions or provide details on the pathological conditions of their patients, which would help make informed decisions.

[English]

The present review and appeal process can also be intimidating and confusing. The subsequent delay can be devastating for a person with mental illness. A Canadian from P.E.I. had to sell his car in order to live while his appeal took eleven months to be resolved.

What is needed is some out-of-the-box thinking that would lead to a disability program that provides incentives for persons with serious mental illness to increase their constructive involvement in society.

Thank you for your attention.

The Chair: Thank you very much.

Deanna.

Ms. Deanna Groetzinger (Vice-President, Communications, Multiple Sclerosis Society of Canada): The Multiple Sclerosis Society of Canada welcomes this opportunity to provide input today.

Canada Pension Plan disability benefits are a key support for people with MS. As of December 1999, more than 10,000 people with MS in Canada were receiving CPP disability benefits.

Most people with MS are eventually unable to work full-time, and many experience total disability, forcing them to have to leave the workforce totally. According to a major study of the cost of MS in Canada, the time between diagnosis and employment change occurs quite soon, and escalates with increasing disability. In fact, 25% of people with MS have a significant change of employment within five years following their diagnosis, 50% within ten years, and 80% within twenty years. Remember, this is a disease with an average age of diagnosis of thirty.

In terms of the severity of the disability, even in people who are still able to walk, almost 50% are unemployed. A major contributing factor for unemployment and MS is the impact of fatigue. This is an all-pervasive, overwhelming fatigue quite different from feeling tired because of physical exertion. It is thought by physicians to be connected to the location of MS plaques within the central nervous system, and is the most common symptom in MS, reported by more than 80% of those who have the disease.

These are shocking statistics, and some find them hard to understand. So the MS Society of Canada asked a leading MS clinician and researcher to explain how having MS leads all too often to unemployment, even in people who do not need to use a wheelchair and might appear to the untrained eye to be perfectly fine. Dr. Luanne Metz, director of the MS clinic at Foothills Hospital in Calgary, has identified the following significant factors: physical and/or cognitive inability to carry out the task of the job; inability to complete the job at an acceptable rate and capacity, with fatigue often being a factor in this; insufficient stamina to consistently complete the job reliably, in which fatigue is also a major factor; and frequent disease activity and illness related to MS and the need for treatment may lead to there being too many sick days to allow for employability.

I'd like to give you an example of how fatigue actually impacts a person and their ability to work. A man in Kirkland, Quebec, had to stop working after continually falling asleep at work. He said this would happen initially when he was working on the computer or reading contracts. At the end of his employment, the waves of fatigue resulted in him falling asleep, even at meetings with others. He said: “My life became work and sleep. I had no energy to do anything else. In the last month or two, there were nights when I went to bed without supper because I had no energy to reheat food in the microwave, or to answer the door if I ordered something.” He applied for CPP disability benefits, which he eventually received.

Unfortunately, MS Society volunteers and staff also report problems with people with MS in obtaining CPP disability benefits, even when people are more obviously disabled. I'm hoping this is an extreme case, but in Calgary a 42-year-old woman with primary progressive MS--meaning the disease progresses relentlessly without the relapses and remissions we see in most cases--was denied benefits at the application level and later at the appeals and reconsiderations level. She has experienced many visible and invisible symptoms, including having to use a manual wheelchair because she cannot walk without assistance; significant fatigue, unless she sleeps 15 hours to 20 hours a day; intense neurological pain, for which she must take a number of medications, which also impact her quality of life; inability to tolerate any light because of neurological reasons, and having to wear special glasses to reduce this light; difficulty swallowing, meaning all food must be puréed to prevent choking; and bowel and bladder incontinence, and speech problems. Our chapter was able to assist her in finally obtaining benefits at the review tribunal level. They still cannot understand how a person this disabled could slip through the cracks.

The MS Society of Canada has identified several areas within the CPP disability benefits program that should be improved for the benefit of people with multiple sclerosis and others with cyclical diseases. We believe this would not place a major financial burden upon the Government of Canada.

The current qualification criteria from CPP disability benefits require the illness to be severe, long continued, and of indefinite duration. MS is permanent and often severe. But the often fluctuating nature of MS, with periods of remission followed by periods of unpredictable worsening, frequently prevents many individuals with MS from participating regularly in the workforce and from qualifying for disability benefits, because their condition is considered recurrent rather than prolonged.

¿ (0925)

Changing the definition of disability to include conditions that are cyclical would be fairer to people who have diseases like multiple sclerosis.

CPP disability benefits are calculated based on the amount of earnings and contributions credited to an individual CPP account as well as on how long the individual has contributed. This contribution period is significant, since each person's lifetime pensionable earnings are divided by the number of months in his or her contribution period.

A recent change, the change from the “four out of six” contribution year rule that replaced the “five out of ten“, has made it difficult for many people who are disabled because of MS to qualify for the program. In addition, the current 15% dropout rule does not cover many young people with MS who are unable to contribute to the plan for the required ten years. Again, we're talking about people with an average age of diagnosis of 30, with many diagnosed sometime before that.

MS causes a wide variety of symptoms that are disabling, including severe fatigue, as mentioned. Many people with MS tell us that while they aren't able to work full-time, they would be able to manage part-time or occasional employment above the current $3,900 cut-off for part-time work. This would bring about the obvious advantage of increasing income as well other benefits such as maintaining community involvement and a sense of self-worth.

In the past the MS Society of Canada has criticized the backlogs in initial CPP disability benefit applications and the lengthy delays in processing appeals. This process seems to be improving, although we continue to monitor them through our members. In addition, we will continue to seek opportunities to provide information about MS to Human Resources Development Canada and to the CPP Review Tribunal members because we want to assist them to do the best job possible.

We are also concerned that some private insurance and provincial social assistance programs require people to apply first for CPP disability benefits even though it's clear that most people will not qualify for CPP under current criteria. It appears to us that significant administrative costs are being transferred to CPP for disability assessments.

We found that the majority of people who do appeal with our assistance are granted benefits. It appears that within the appeals process people have an opportunity to provide more detailed information to the medical adjudicator. This suggests that there was a flaw in the system from the beginning, making the process inefficient and wasteful of taxpayers' money and leaving people who are struggling with disabilities without a way to make ends meet--and we've heard from Elisabeth one of the outcomes of that.

In conclusion, we do have some recommendations: first, that a new and fairer definition of disability be developed to cover people with severe prolonged or recurrent disabilities, one that will touch people who have cyclical kinds of illnesses; that the 15% dropout rule be extended to those who have contributed to the plan for at least five years, which will provide young people with MS and their families a more adequate level of income; that the rules be more flexible to allow beneficiaries to do more part-time or occasional work without risking their eligibility for benefits; and that there be fixed timelines for application, review, and appeal. Applications, for example, should be processed within 60 calendar days of receipt and internal reviews completed within 60 calendar days of receipt. As I mentioned, there have been improvements in this area, but this area should be monitored very carefully.

CPP officials as well should be provided with information and learning materials to increase their understanding of MS and the circumstances of people with the disease. We'll be very pleased to work with the Government of Canada to produce such materials and to ensure that they are accurate and current. We've already begun this process with several CPP regional offices and are pleased to note that this seems to be a very good collaborative effort.

We're also pleased that the subcommittee is undertaking this study. Secure adequate income support is a foundation for the ability of people with MS to fully exercise their rights as Canadian citizens and to be part of mainstream Canadian economic and social life. It's important that CPP disability benefits, which are a key component of the support, be as effective and fair as possible.

¿ (0930)

We would also like to congratulate the subcommittee for establishing the website and encouraging Canadians to participate directly through the online poll and the e-consultation. We have encouraged many of our members to participate, and I hope you've been flooded with responses. I think this approach should allow people from across Canada to play a role in this subcommittee's work and provide some important perspectives to you as members.

Thank you very much for your time and consideration.

¿ (0935)

The Chair: Thank you very much.

Your last comment may pre-empt my shameless commercial to make sure that all the organizations are making sure their members are doing the issue poll and telling the stories. As we've heard from the testimony, these stories are actually what tells the tale in terms of what Canadians want as fairness. The issue polls are important, but we do hope that your members will be telling their stories; I think that gives us the best ammunition to make change. So thanks very much.

Mr. Goldring.

Mr. Peter Goldring (Edmonton Centre-East, Canadian Alliance): Thank you, Madam Chair, and thank you very much for your presentation, ladies and gentlemen.

Just in reviewing this information, I would make an initial comment that of course in a caring society we must help those who do need our help and assistance and that this should always be our goal. How to define this yardstick of acceptability or how to measure and qualify this seems to be the concern here.

Throughout the information I've read and from interacting with people coming to my office with applications for CPP and disability pensions, I've learned that we really must be very, very careful here too that if we make a definition on this, we don't interfere with one quality of life, and that's a person's ability to interact with others in the workplace.

I'm thinking of a long-time employee of mine, an employee for some fifteen years, who had MS. I could see his health degenerating, but his joy in life, if you like, or his reason for being was to make every attempt to come to work, and that was his first priority. That was his interaction with the public and with life. It's very important that when we define this, we don't interfere with this type of thing. In other words, let's not, to use an expression, throw the baby out with the bathwater. It's very important that it not be just a matter of financial gain; it's a matter of them having this quality of interaction with people.

With that in mind, I'd like to ask about HIV. This may be relative in other areas, maybe not so much in the MS area because we all know that's degenerative, but with HIV we have new medications, we have new things on the horizon, new medicines we know are coming, which will directly affect whether some people can return to the workplace. Are we keeping this in mind when we ask for definitions of a person's disability and ask to make applications easier, that some of these will be reversed by modern medicines and by modern practices?

Mr. Paul Lapierre: Yes, we are keeping that in mind, and I think it is the ultimate goal. Our raison d'être is that there will be a cure available, that there will be a vaccine available. But we are also very conscious that when we're looking at vaccines, we're looking at something that is probably 10 to 15 years down the road.

When it comes to medication, it's great, and over 50% of people living with HIV and AIDS in Canada are under treatment. But the finding is that even though people's HIV is under control--the viral load is undetectable and the CD4 count is high enough, as high as the average Canadian's--the high level of toxicity and the side effects of some of the medication, liver failure in some cases, are forcing people back into the disability program or to be off work.

Our ultimate goal is that everybody should have a healthy life and healthy living and be able to go back to work, but we know the medication is not as perfect as it could be at this point.

Mr. Peter Goldring: Now, for the people who have HIV, does this fact automatically trigger acceptability for pensions? Of the people who do have HIV, are there not a wide variety of reactions and responses? How many of the people who are identified and under treatment for HIV can function relatively normally? How do we measure and tell the difference if we're defining rules on acceptability for pensions on who is and who can't? How do you define that?

I guess the question is, are there many who are HIV-identified who don't show these reactions to medicines and can interact fully in the workplace?

¿ (0940)

Ms. Ainsley Chapman: I don't think we have numbers available here, if you're looking for statistics.

I'm not sure if Paul--

Mr. Paul Lapierre: One of the criteria used.... To be HIV positive is not necessarily the qualifier. But when you have shown to be living with AIDS, which is the next phase, where you do have a physical illness or cancer of lymph nodes, this is the qualifier that allows you to become eligible for the CPP program.

Mr. Peter Goldring: How many people are eligible now, and are all the ones who are exhibiting these signs qualifying now?

Mr. Paul Lapierre: It's not a problem. For people who have a medical note saying they have full-blown AIDS and the doctor is recommending that they be off work and go on CPP, it's no longer an issue. In the mid-1980s and early 1990s, it was a challenge, but it was well addressed, while taking under consideration...

From our membership and people, we're not hearing of problems getting into the system. The big issue that we're raising today is getting off the system to go back to work, either part time...or the fear of the three-month period, the trial period. In some cases, people will be back to work for six or nine months and realize that either the medication is no longer effective, or they have another illness or resistance to treatment, liver problems. They have to re-enter the CPP(D) program, and that's where the nightmare starts.

Ms. Ainsley Chapman: I think one of the big issues, too--and this is why we're pushing for, rather than full benefits, looking at part-time--is that with medication, a lot of the side effects of medication are in the morning only. Things like nausea and diarrhea can prevent people from a nine-to-five job. But in an ideal work environment, you can find employment where you can have flex-time, where you can have a supportive environment, where you can take enough time off to go to your doctor's appointment, or come in later in the morning--for example, start at eleven instead of nine.

The problem right now is that's not the environment we're working with, and that's not the climate. So part of it is looking at the CPP program. Part of it is also looking long term at what kind of climate the workplace is in now. If it were possible for people to have more flex time, I think people would need less reliance on the program.

As it stands, for people on medication, that's a reality. A lot of people can't work before noon. Afterwards, that's something else, and that depends on each person.

Mr. Peter Goldring: So when you're calling for a flexible pension, are you calling for a fifty-fifty, so if a person is able to work 50% of the time, the CPP would then go to a 50% paying rate? Is that what you're intending on a flex-time basis?

Ms. Ainsley Chapman: Yes, that would be one option.

The experience that I wish we could give a manual says: HIV is like this; here are the rules. But as we said, it's unpredictable and it varies for each person. For some people, a full work week is fine after a short period of illness; and for other people, halftime or three-quarters. I think there should be more opportunity to negotiate that on an individual basis, as opposed to following strict rules that say this is how it is. That's one of the suggestions we're making.

Mr. Peter Goldring: That would be true, too, with mental illness. If a person is able to work partially, on a fifty-fifty basis, or whatever percentage was decided, they could participate in the workforce.

Ms. Elisabeth Ostiguy: We really think that's important from two aspects: one, because the person is working and contributing, as you indicated with your own employee, where it meant a lot for them to be in there and to have that.

I figure that anyone who can contribute, we should be encouraging them to do so. In the case of people who are suffering from mental illness, it goes a long way to dealing with the mental illness if they can feel good about themselves and realize that society sees them as a worthwhile individual who can contribute.

Mr. Peter Goldring: Just as an observation, talking again about the employee with MS, it was over a period of many years, and you could see the gradual degeneration. He walked into work when he came to work, very slowly, but at the end he was in a wheelchair, over the period of years. So a flexible program, in light of circumstances like that, is probably one of the more clear examples, because there's a readily visible sliding scale, if you like, of his capabilities and mobility.

Thank you very much for your time.

¿ (0945)

The Chair: Thank you.

Madame Dalphond-Guiral.

[Translation]

Ms. Madeleine Dalphond-Guiral: Thank you, Madam Chair.

Good morning to the four of you. I have listened to your presentations and have read at the same time, which proves that one can do two things at the same time. There are a certain number of things that surprised me, but one in particular. I'm almost tempted to say it shocked me, and God knows I'm not easy to shock. When I read that the number of CPP recipients in 1980--the number, not the percentage, the number--was practically the same as today, I must admit that I find this shocking. I find it shocking because we all know that the number of people with functional limitations is increasing and will continue to increase. This is therefore something profoundly illogical. That is the first thing that somewhat amazed me.

I have had the opportunity to complete two one-week tours in Québec, and I heard one thing, specifically as regards mental health and multiple sclerosis. I must say that because of my former life, I am really very concerned with this. However, for everything relating to aids, this is something that did not show up in my tours; I did not hear anyone speak of it. I know HIV/AIDS is an extremely debilitating disease. Probably, what is the most debilitating, and this is not the most apparent, is the loss of self-esteem and the feeling that nobody will want to have a close relationship with us. And we know that work relationships are close ones. I think that, no matter what health problem we face, all this relational aspect has an influence on the capacity, not to heal, but to not deteriorate so fast.

I would like to ask a question to both the people who represent the mental health organization and those who represent the multiple sclerosis organization. Do you have information on the evolution of the disease among people who work? For example, I know there are people suffering from multiple sclerosis who are fortunate enough to be in an extremely flexible work environment. They can sometimes work five days a week, and sometimes only two days, and this is no tragedy. It is recognized by the company, and there are benefits to the company. I don't think they do it out of charity.

Can you tell me if working people suffering from a mental health disorder or multiple sclerosis--which are diseases that develop somewhat randomly--seem to have a more acceptable evolution? In other words, does work not have a therapeutic effect? If you have information on this, it is important to make it known, because there are human costs, but also social costs. I think this is something that should be narrowly targeted. In other words, when one has a job, even with an extremely serious health problem, does one not feel better? As regards HIV-AIDS, you probably also have information on this, because there are sufferers who manage to work. Anyway, we have the impression that things are not so bad.

There is another thing, and I will turn to Ms. Ostiguy. You said that when the first CPP application is evaluated, a report signed by a psychiatrist has more value than one signed by a family doctor. I can understand this, and it does not shock me. However, we know very well that mental disease does not hit only in major centres, where there are many psychiatrists. It can hit anywhere, and sometimes it is not at all easy to get a psychiatrist.

¿ (0950)

There are nurses specialized in psychiatry who are excellent professionals and who know the clients more than the psychiatrist, who is more dispersed. I think Carolyn will agree with me. Do you think nursing professionals who are truly specialized in psychiatry, who have expertise, should be recognized as sufficiently competent to fill out the first form?

As for work-hours flexibility, I had to smile when you talked about this because I remember the battles fought by mothers to have flexible hours. In a certain way, the battles fought by women and the few gains that were achieved may not necessarily be a model, but they may help people with functional limitations.

Finally, I will tell you what I think. I think we live in a very rich society. We also live in a society that may sometimes choose to close its eyes because it's easier. But I am deeply convinced that there should be a minimum level under which it is unacceptable that any person should be, no matter what the reason. I cannot see why such a person should be punished for being there. Some say that it's the person's fault. I personally drive quite fast, and if I ever go off the road, people will say that it's my fault. It's true, and I know it, but is this a sufficient reason to punish me? We are still in a Judeo-Christian system, and the notion of punishment is still there.

These are my reflections. The Chair is generous; she did not cut me off.

Mme Elisabeth Ostiguy: In mental disease treatment, we have a goal. We want a person suffering from mental disease to be treated the same way as a person with cancer. It's a disease. It's not something unknown or gross. It's a disease. All too often, people with mental disease are treated in a discriminatory way.

Going back to work is a success formula in treating mental disease, because these people recover their dignity. They are told they are worth something and are wanted. Very often, discrimination means that people with mental disease are not visited by their families and are set aside by their employers. There is a very punitive message from the start in the way these people are treated.

I do not have numbers before me, but I will give an example. There is a nurse who suffers from severe depression and who cannot work. Because of her medication, she put on a lot of weight and has respiratory problems. The care and financial assistance she has enable her to buy only enough oxygen for half the week. She is an intelligent woman. She is an intellectual resource that we are losing. We benefit a little from this in our association because she helps us move ahead with the home care issue, but she can only work three days a week because she has no oxygen left after these three days. After that, she has to struggle to survive the rest of the week.

To answer your question about nurses in psychiatry, I believe that in general, nurses are not used enough for what they can bring to the system. I think they are highly qualified to fill out the forms. Often times, they are more personally affected by the patient and can therefore sometimes better describe the disease.

¿ (0955)

[English]

Ms. Deanna Groetzinger: I'll give an example of the therapeutic value of work. I would say that most people with multiple sclerosis would want to maintain some kind of attachment to the workforce. What you propose in terms of actual data collection and a study on this, we haven't done. We do have a fair amount of anecdotal evidence in terms of people telling us that they want to stay attached, people who work part-time, who have worked with their employers, and who've asked us to help them convince employers that flexible work time is an advantage on both sides. We certainly spend a fair amount of support time in this area and develop some information.

I think that as an organization we have agreed that an attachment to the workforce should be maintained as long as possible. I think it lends itself perhaps to the physical well-being but certainly to the mental well-being of the person and one's sense of oneself as a person in society and within one's own family.

Going back to the questions that were raised around HIV/AIDS, we're talking here about illnesses that are extraordinarily unpredictable and individual. I think the approach of any kind of disability benefits program has to be a holistic one; it cannot be, “You have multiple sclerosis. Therefore, in five years' time you will be this.” There is a movement toward unemployment in MS cases, but I can cite many cases of people who still work full-time or part-time. A former mayor of Yellowknife had multiple sclerosis. There are all kinds of examples of people who continue on with regular employment. But we cannot lose sight of the fact that there are many individuals who cannot, and I think that's what we really have to concentrate on.

The Chair: Last week I was at the timely return to work roundtable meeting. It's obvious that the workplace environment itself is hugely important. There may be some dignity in returning to work, but if it's a toxic work environment, I feel that for patients whose condition has to do with their immune system, such as AIDS and MS, it can actually make them sick. In the broadest part of this policy, returning to work and flexibility truly added to the situation.

What kind of work would we have to do on employers to make sure that if we were really going to get this right, the environment we're allowing people to come in and out of promotes wellness and dignity and is not something that makes people sicker than they would be if they weren't working?

Tony, you have to go back to the House. Do you want to ask a quick question before you go?

Mr. Tony Tirabassi (Niagara Centre, Lib.): Thank you, Madam Chair.

First of all, thank you for making an appearance here today.

What I've noticed is that for the people with disabilities who come into our office, their cases are as individual as the individuals themselves. I think you've all alluded to that, as have other witnesses.

Mr. Lapierre, I believe you made the statement that we have to think outside of the box. It just makes one wonder if CPPD by itself is the ideal vehicle for the partial income replacement program, which it was designed to be. Or is there another model or vehicle that could be used that would be helpful but at the same time affordable?

À (1000)

Mr. Paul Lapierre: That's a good question. From our experience with people infected by HIV/AIDS, some people want it to be one shopping mall where the one point of entry will provide them with all the answers. But in other cases there are a lot of confidentiality components and treatment issues, so we need to tailor the various approaches to the needs of the individual.

The model we are promoting is to get the players around the table to discuss it. I think what we're doing today is going in a good direction. We need to promote partnership with the employers, unions, and vocational schools.

We talk about self-esteem. Often going back to work, or la réinsertion sociale, goes beyond working for a paycheque. Entering an environment in the capacity of a student or a volunteer can be as effective and as healthy as going to work for a paycheque.

What I mean by thinking outside the box is looking at various models where we can be creative to ensure healthy living, where health as illness is considered but an environment is created where toxicity from the workplace or from your medication will create a mental framework that will promote healthy living.

Too often we talk about job re-entry or rehabilitation and limit ourselves to rehabilitation in the workforce, but what is the workforce? Is it doing volunteer work? Some board members of the Canadian AIDS Society have been off work for twenty years, but they have been so active that I wish sometimes I didn't have to work for a paycheque and could be a volunteer as active as they are.

The individual I call Bob has been telling us, “I'm here today because of the flexibility in the system that allows me to do volunteer work. Being stuck at home getting my disability cheque every month would have killed me. I'm able to be active.” So the volunteer model has been working well for Bob.

Maybe for Sarah we need a part-time program where she can go to school and go to work part-time.

I'm trying to answer your question in terms of the models. Put the individual at the centre of the model and have it individual-centred, not necessarily system-centred.

The Chair: In Quebec, is there a better organization between UIC and QPP...? Is there a model that you've seen across the country that's more collaborative?

Ms. Ainsley Chapman: I don't have enough of that information here, but I don't think we're in a position to say it's a better model.

Ms. Wendy Lill (Dartmouth, NDP): Thanks so much for coming.

It's fabulous to hear what you have to say, because you're putting forward very clear, concise, well-thought-out recommendations that are required for the people you're seeing every day, people who have HIV or who have episodic degenerative types of conditions.

I wasn't here for this hearing.... There was a hearing about three weeks ago now with Michael Mendelson and Sherri Torjman, and I actually just read these transcripts last night and I was very excited by them. I wish I had been here.

In any event, I want to ask a question on what was raised in this meeting, and they were big-picture questions. This is the idea that the Canada Pension Plan disability program works on a binary categorization: you're either on one side of the fence or the other. You're healthy or you're not healthy, and you have to work like hell to get into the category of being unhealthy, and then what does that do for your state of mind?

But the idea that was raised is can we think of the possibility of designing an income security system and a services support system in this country that never uses the word “disability”, or at the very least doesn't require the categorization of human beings as a particular thing, either disabled or not disabled?

You've talked about the issue of how people are able, or less able, at different points to connect with their world, economically, socially, whatever. Are there other ways of thinking about this whole issue and trying to push the people who make policy on this to re-envisage the whole thing so that we're not simply making more boxes? I'll tell you, we're very disappointed to see that the Department of Finance looks like they're trying to push back in the issues of feeding and dressing for the purposes of the disability tax credit.

So we're working against a mountain here, but there are other countries--the Netherlands, for an example--that do not use this disability model for income support programs, and they're able to meet the needs of people with varying degrees of ability with a lot more dignity than we've managed to accomplish. So any comments you have on this I'd appreciate.

À (1005)

Ms. Elisabeth Ostiguy: I'm presently organizing an art exhibit that we're going to have on the Hill during Mental Health Week, and I'm bringing in art work from each province and each territory, art that has been created by people who have been affected by mental health problems.

One of the burning questions I've had to deal with is that when we're applying for a Canada Council grant to help us do this they require me to pay a stipend to the artists. We would also like to have a bursary to provide to the artist who shows the most talent to allow them to develop their skills further. The burning question is, do you really have to give me money, because it's going to affect my disability benefits? And we're talking about a stipend of $30 and the possibility of maybe getting a couple of hundred dollars that would help develop talented Canadians in an area in which they're contributing very positively to society. But we've compartmentalized them. We have told them they are unemployable. We have told them they are disabled, which speaks to your point, and we say go off, take your pension, and then get out of our faces.

We have created virtual asylums. We do not need four walls. We do it very well with a little cheque they get every month.

The Chair: Elisabeth, on that point, is that CPPD or is it the private insurers, and the provincial plans, and all of that, which are that strict?

Ms. Elisabeth Ostiguy: Partly it's the provinces and it's partly the federal as well. They are allowed to earn a certain amount at the federal level without affecting them, but if I give them a bursary of a couple of thousand dollars, it does affect it at the federal level. So I have to be very careful about contributing--

The Chair: My understanding of CPP is that $30 a week wouldn't tilt you over.

Ms. Elisabeth Ostiguy: It does at the provincial level, but the larger bursary would really throw them off. But that's the thinking they have to deal with. They have to sit there and say, “I can't work more than this”, or “I can't do this and I can't do that because I have to keep this unemployable label. I have to keep my disabled label so that I can have my social safety net.”

Going about it in different ways...and I've always believed a positive approach bears a lot more fruit than if we're always saying to people, no, you can't. I believe we should say yes, you can, you can work what you can, whether you have MS, whether you have AIDS, whether you have a mental illness, and we're here as a society to say it's a good going, you've done it, you're out there contributing--and by the way, we're going to make sure that you have that minimum so that you can survive and that we will top up rather than take away.

The Chair: Mrs. Groetzinger.

Ms. Deanna Groetzinger: If I could answer that as well, what we have is a very piecemeal, confusing system. I think most of us have been at this table before talking about disability tax credit issues, and we're still talking about those, and I suspect we will continue for the rest of this year with some of those issues. It is very compartmentalized. It is very much a challenge for people who have a number of health issues to begin with to actually understand the system, to actually manoeuvre their way through, to get the proper supports they need from various health care professionals and to work it through.

What's occurred to us in my organization is there must be a better way to do all this. Can we look at something broader around income support? Whether the word “disability” enters into that or not is I think open to debate, but is it based on need? Is it based on some other criteria? I think this is a discussion that should begin, because I think what we're having now is that we're often quibbling about nuances, and I don't think that's terribly helpful to an overall outcome.

À (1010)

Ms. Ainsley Chapman: I have one quick comment.

One other challenge a lot of people face when applying is there are different definitions of what's considered disability or ability. When one person applies at the federal level for a disability plan, when they apply for another social assistance program they don't qualify. So a lot of people are receiving mixed messages that I'm financially eligible for one program but not for another, and I'm disabled enough for one program but not for another. That's another thing, that a lot of people are getting mixed messages as they apply to different programs.

Ms. Wendy Lill: I have a further question about the workplace. The fact is we need workplaces that will recognize the varying abilities of people, and I don't know whether they exist. I'd like you to comment on that. It seems to me the best place would be the federal government--

Ms. Madeleine Dalphond-Guiral: I'm not sure it's true.

Ms. Wendy Lill: I don't think it's true, but I'd like to know what you have to say on that. Are there workplaces you can tell us about--and I'd like you to say it's the ODI, and all sorts of places right here--

A witness: The Department of Health.

Ms. Wendy Lill: --where people with MS, people with HIV, people with mental illness can in fact do appropriate job sharing, where they've worked it out and there are best practices around that, and we can all say look, it works. Then we can do educational programs with larger employers out in the community and show, look, it works. It's good business, but it's also basically a positive message of we want you, you have a role to play, and you're part of the family. And that's a message that bears fruit and doesn't destroy people.

Ms. Deanna Groetzinger: Perhaps I'll start and then--

The Chair: Just to follow up on Wendy's question, because she's not allowed to ask it, can unions sometimes be helpful or hindering in terms of the linear approach to this, as well as workplaces?

Ms. Deanna Groetzinger: I will start with some examples I know about.

Actually you're quite right, when we were talking before we were talking about the ideal workplace. That is, we assume that everyone out there is supportive, there's flex time, there are all of these other good things, and that's unfortunately not the case, because I think--and hopefully Elizabeth will back me up on this--that probably one of the major causes of stress in the society is the workplace.

So I think we have dilemmas here. But certainly--again, it's going to be anecdotal, I don't have hard data--there have been a number of people with MS who have been able to work out very positive working relationships with employers, including flex time, part-time, and being able to be on leaves during periods when they have relapses and then come back.

What seems to be perhaps something that is a common throughout this is that perhaps we do better with larger corporations because they have more people, more flexibility. Maybe I can cite some names here of organizations or corporations that have been very helpful. For example, Bell Canada has a very positive attitude toward flexibility in terms of at least people with disability, and the Royal Bank is quite aggressive in this area as well. I'm only citing those that I know; I'm sure there are others.

I think when you get into smaller organizations perhaps again they don't perhaps have the flexibility that is needed, so do we then need carrots and sticks kinds of things to help people make these kinds of arrangements?

On the other hand, I also know that even with these very positive arrangements, often with MS, because overall the course of the disease will be increasingly disabling, these arrangements usually do come to an end at some point and people have to leave the workforce. So again there's the question of flexibility, knowing that it's going to be for a period of time, but we also know that not every workplace is going to be supportive and helpful no matter what all employment equity legislation says. There are dynamics at work there that can be problematic.

À (1015)

Ms. Wendy Lill: I'm not shying away from the union question. I'd like to know whether you would say that the Public Service Alliance and CUPE, for example, are doing progressive things in this area. In your estimation, are they trying to look out for workers who have episodic illnesses? Are they trying to get some kind of language into their contracts, that you know of, and have you worked with them on that?

Ms. Deanna Groetzinger: We haven't directly. I don't know whether others have.

Ms. Elisabeth Ostiguy: I can't address the broader question, but what I can say is that we have chapters across the country who will have work programs where they will have set-ups where there are support systems so that there is a social worker who is supporting a group of people who are suffering from mental illnesses to work on a part-time basis. These are very sporadic; it depends on priorities within specific chapters, whether they do it. I know there's a program in Toronto, which I probably could get more details about, to show just how those types of things work.

Ms. Deanna Groetzinger: It's an excellent question, though. I'll do some more work.

Mr. Paul Lapierre: Before working with the Canadian AIDS Society, I was working in Winnipeg with the community health centre, the AIDS service organization. The partnership with the employer and CUPE to ensure that the collective agreement was representative for the people living with HIV and AIDS was absolutely amazing. It was done at the local level.

The challenge at that point was that both management and the union were in agreement, but in order to fund those programs we had to rely on the government for funding initiatives. So the challenge we were facing, in order to provide flex hours or...

Two employees working part-time is more than one FTE, because there's an overlap--joint meetings and all that. So we needed to come up with an increase in FTEs to allow people to work part-time, to offset the needs of job-sharing and all that. We had to go back to the provincial government and the federal government to increase the funding, and that's where we had resistance, because often governments work in compartments, in timelines, in programs that are restrictive.

One example I will use is the AIDS community action program to support the community. They were saying the funding level has been frozen for three years, so we'll try to help you find more resources. But in order to implement time-sharing, we needed more salary dollars. So unions and management, in those circumstances, have worked well.

The HIV community has created good modules or training, and it has been implemented. In our experience, when we have Bell Canada or the Royal Bank, it's hard, but if we go to a branch or a local office and one of your sisters or brothers is infected, or one of your immediate colleagues, because you're part of the local family, there will be some sensitivity to the issue. You might have some workshops, the AIDS awareness week... You can build. I think it's our role as an AIDS services community when we work with other companies to ensure that there is some basic stuff happening.

When the Canadian AIDS Society organizes a skills-building in November in Calgary, one of the contracts we're giving to the hotel is some HIV training for the staff. We insist. You want our business, so not only will we give you money, but we'll provide you training, HIV 101, in terms of prevention. It's to force the issue, because we cannot rely on what I call the “big boss” over there to make it happen. It's us who have to make a social change.

Thanks.

The Chair: For some of your clients or your members, in this change in society toward more contract work and all of those, have you come up against problems where people are hired for six months less a day so they don't have to pay benefits, and then eventually don't qualify for anything? Is that a societal trend we should also comment on, that people who've been obviously working lots of contracts, who then come down with any of these problems, end up with no benefits?

À (1020)

Ms. Ainsley Chapman: Yes, I think that's a larger problem in general, certainly not just something that people with disabilities are facing. But overall....

One of the points we made in the brief is that when this was set up in 1966, people had job permanency and job security, and there was more opportunity to create savings, private insurance, and investment opportunities, whereas now, not just people with disabilities, but as a general rule people have less opportunity to acquire savings, less opportunity to have their own pension plans through their companies, things like that. That's also affecting eligibility requirements, people who haven't met the ten-year...those rules again.

The Chair: Mr. Goldring.

Mr. Peter Goldring: Thank you very much, Madam Chair.

It's a very important subject, and I think as members of Parliament we all have had many people come to our office raising the complaint that they have difficulty in having their needs assessed by CPP. Again and again this fixed yardstick rule is used and eliminates so very many of them. It must be a disappointment for you.

I'm just going to raise this as an observation, that the one party that could really address this in the House as we speak is decidedly absent from this room, other than Madam Chair. It's very much of a disappointment, and it must be a disappointment for you too. As I said, many people have come to my office.

One of the other areas of degenerative disease is arthritis, and it's a very common one. Once again, it's very difficult for people to access disability benefits because of time and time again being turned down by the assessors, even though they're very visibly debilitated by the encroachment of it. Arthritis is one disease that degenerates on a gradual scale, and many of those who have arthritis have been in the workplace where they have had heavy physical work over a period of time.

What is your feeling on that—as well as on MS and some of the others too—that no, they can't continue as a nurse in their profession, or can't continue as a college professor or something else, something that has more physical mobility requirements? Are there allowances here for retraining, and not just in volunteer work—you've mentioned volunteer work and social work, non-paying jobs—but returning to the workplace?

Is there not a disincentive for it because generally the jobs might be low-paying, and generally the low-paying jobs may well not equal the pension payment itself, too? Is there an active encouragement for people to get beyond the paycheque level and to look at re-entering the workplace as therapeutic, if nothing else?

Who would like to answer that?

Ms. Deanna Groetzinger: I'll give a first answer.

Specifically with MS, I think we are looking at a population in which the first thing that is difficult for them to manage is the physical work. Going from a white-collar job, which is less physically demanding, to one in which there is a lot of physical effort involved would actually be extraordinarily detrimental for most people with MS, with the clients showing regular symptoms.

As for job training, I've spoken to people who have actually found it difficult to get retraining. Because MS is known to be degenerative and will progress over time—people will get more disabled—it's considered to be not worth the investment to invest in someone who will probably, five years down the line, no longer be able to work anyway. That's a real problem people with MS face, because of the long-term prognosis for the disease.

What we would want is for people to be retrained—that's if somebody is in a physically demanding occupation—for something that is much less physically demanding. But there are some barriers to getting that retraining, just because statistics say these people are going to end up disabled, so why bother to put all this money into them?

À (1025)

Mr. Peter Goldring: But is one of the barriers not lower wages? Many of these jobs may be what you might classify entry-level, basic, simple jobs, but they are available—more sedentary jobs that people could, even with MS, perform with very little training.

Ms. Deanna Groetzinger: It depends on the job. Again, I would ask, is it data entry, which you would be doing seven hours a day? That presumably would be less stressful than being perhaps a teacher—certainly physically less demanding—but much lower paid. I haven't heard a lot about that; I hear much more about people wanting to just go to more of a part-time whatever.

If we're talking about the kinds of symptoms most people with MS have, which are extraordinary fatigue, they could probably manage a morning's work; they could not manage to work in the afternoon, just because that's when they start needing the rest. Again, we're back to that individual question of what the real symptoms are, what the real prognosis is, and we have to deal with it here and now, with the symptoms that exist now.

Mr. Peter Goldring: There was comment on employers and the difficulty of assessing whether many employers would entertain flex hours and disabilities, and I would say yes, they would.

Now, you identified that perhaps the difficulty is funding to be able to make employers aware, to raise awareness of it. I would think, with our regular interaction with employers across this country--we already have interaction with them, whether it be for unemployment, special job hiring, or student hiring--it wouldn't be that much extra to add some clarity, some additional information, on this.

Members of Parliament are from varied backgrounds. I come from a business background, and I'll assure you that businesses don't necessarily have to have Christian charity, although that might help a little, but they do have consciences and they are members of the community. I think in most cases they simply have to be reminded of this and be spurred into thinking out of the box themselves on what they can do to better participate.

Mr. Lapierre, would it be your feeling that we could not very readily add this type of awareness for businesses with very minor extra funding?

Mr. Paul Lapierre: I agree. The awareness is needed, and I think together we can make a difference. When we target and move it forward, I think the private sector has a social conscience. But there's also the actuary component. Private sector business is there also to make some profit.

It's the ongoing dilemma we have with drug companies. We recognize the need for them to make medication for us, but also to make some money. There's a fine line.

But in terms of awareness, I think it's possible to make a difference and to implement some programs. I'm all for it.

Mr. Peter Goldring: I would think it would be a misconception for us to say that private businesses are there for the bottom line. That goes against the grain of private businesses contributing to charities, contributing to many other things that they do on their own. It's very regularly done.

Even if we went to private businesses, if we haven't already, to call upon their Christian charity, call upon their charitable hearts, I think you'd have amazing results. Have we done anything on this directly, going to them to encourage them to think about this?

À (1030)

Ms. Deanna Groetzinger: Well, certainly, as an organization we do work with employers trying to help them understand the disease better and understand how they can support an employee who has MS in the workplace.

We find the most success with people who have an employee there already. It's more difficult to bring someone in who is disabled. Because, as I think you've identified, you're working with the person, you know that person, you want to help them.

I think we've concentrated a lot of our efforts on saying this is a valuable employee, and we both have the goal of keeping this person employed. And we have had some success in providing those kinds of supports over the years.

Mr. Peter Goldring: From your individual organizations' funding, do you all do this on a regular basis? How much of your funding contributes to raising awareness with employers? Would it not be possible to combine forces, to be together on this? Because I can't imagine you're making a direct impact with the employers across Canada. It must be on a hit or miss basis, relatively speaking.

And speaking of the unions, have there been direct discussions, like you're doing today, sitting down with the unions on a national scale to see what they can do to contribute to the well-being of people, seeing if they can't fit it in, not be concerned just about the bottom line, but be concerned about human decency?

Ms. Elisabeth Ostiguy: I recognize that there's the good corporate citizen, and our businesses in Canada have been at the forefront of being part of a very positive contribution to society. Our Ontario division does work with a number of the banks to help educate and to increase the kinds of flexible programs there are. Working within our communities, we have a responsibility to try to influence the environment to be as receptive as possible to what we're doing. One of the reasons we're here today is that you have a fairly key role to play in influencing the environment that we need changed. But we understand that we also have a responsibility to go out into the communities and do that.

I think we need to get people thinking a little differently. A couple of months ago I was at a dinner at our church, and I was sitting across from one of the neighbours. I said, “So what are you up to now?” She said, “I'm on disability.” I said, “What's the problem?” She said, “I'm a nurse, and my back went out and I can't do any of the heavy lifting.” I thought, what a shame that we're losing access to this wonderful resource when we need people to give consultation on nutrition so that we can deal with issues of diabetes and we need to educate people on the consequences of different illnesses. Maybe this person can't do the physical work any more, but she certainly can use her knowledge base to go out and educate. As a society we've handed her a disability cheque and said go off and stay at home, without looking at the resources we possibly have.

One of the reasons I'm doing this art exhibit is to raise awareness that people who just happen to have a mental illness are also very talented and can contribute to our Canadian society. We're going to do it in a very visual way. You're going to be able to look at sculptures, photography, and paintings. There are some interesting things coming here from across the country in May. The reason we're doing that is to say here's a Canadian who has something to contribute to society. Let's recognize that everyone has something to contribute. We're here on behalf of our different communities to say that our people have something to contribute. We would like to see a structure that's going to allow them to do that.

The Chair: I think we're going to have to stop. Otherwise, we're going to run out of time.

I think we have a lot of work to do. On maternity leave, we're not doing so great with some of the employers. I think this is an ongoing responsibility of how in a collaborative way we can make the workplace more family and wellness friendly.

As we start to work on our report, we would like to receive from you any numbers you have in terms of your experiences with your advocacy work around applicants, and we would like to hear about some of the experiences your members have had within the department at tribunals and appeal processes. Some people with MS spend a lot of time going through the appeal process, and we talked about developing a tool, with the MS Society's help, that would be available early on and could prevent all of that. We are also very interested in the interface between private insurers, provincial plans, workers' compensation, etc.

Any additional observations you have and numbers associated with your work would be helpful. You can send it to the clerk so that we can include it in our deliberations.

We will now adjourn this part of the meeting and continue in camera.

[Proceedings continue in camera]