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

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

EVIDENCE

[Recorded by Electronic Apparatus]

Wednesday, February 23, 2000

• 1539

[English]

The Chair (Ms. Carolyn Bennett (St. Paul's, Lib.)): I'll call the meeting to order.

We have a small problem on the Liberal side. Two of our members are on the clarity committee, so they are AWOL, or whatever “with leave” is. I believe Nancy's coming, and hopefully Joe. But we will proceed.

• 1540

We welcome, from Statistics Canada, Mike Sheridan and Doug Norris; and from HRDC, Jean-Pierre Voyer. Thank you for coming.

Those of us on the committee feel that the first tiny bit of work we did last year under the mandate of this committee was to fight to make sure that we would get another HALS, and we are thrilled that you're here to give us an update and a briefing. Then I think we have some questions.

Mr. Mike Sheridan (Assistant Chief Statistician, Social Institutions and Labour Statistics, Statistics Canada): Thank you very much.

My colleague Dr. Doug Norris, the director general of Census and Demographic Statistics Branch at Statistics Canada, is hopefully going to answer that question you asked with regard to where we are with the health and activities limitation survey—HALS. My colleague Jean-Pierre Voyer, director general of the Applied Research Branch at Human Resources Development Canada, is also here to help us sort out any questions or comprehensive issues that arise out of this.

I basically would like to make a 30-second opening comment to say that both Human Resources Development Canada and Statistics Canada have indeed made a long-term commitment to responding to the recommendations out of that very first Obstacles report, and in fact the one and only Obstacles report recommendation 113.

You'll recall that we said Statistics Canada will work with partners to develop and construct a series of databases and surveys that will provide information to feed both policy and an understanding of the kinds of barriers disabled persons are encountering in Canada. Through that we've developed a series of what I think are significantly and substantively important databases that have addressed some of the key issues, especially as they relate to long-term issues around health and disability.

So with that as an opening, I'll ask my colleague Dr. Norris if he could provide us with a rather quick update as to where we stand with the HALS situation.

Mr. Doug Norris (Director General, Census and Demographic Statistics, Statistics Canada): Thank you, Mike.

I was looking back over my notes, and it was a little bit over a year ago that I was here with you to talk about what we hoped to do, and I'm pleased to say that we have accomplished an awful lot over the past year in terms of working toward a survey following our census next year. I'll just briefly update you on what we've done over the past year and where we are today and just sketch out what lies ahead over the next year or so.

The highest priority for us over the past year has been to look at the methodology we use to conduct the HALS-type survey and to try to see if we can modify this to reduce costs and respondent burden. If you remember, last year I outlined for you that the approach we used in carrying out this survey was a two-stage one where we used our census of population and included in there what we call a filter question, a very brief question, to identify people who we then go on to survey in a second phase of a much more comprehensive survey. That approach has worked quite well, but it is fairly cumbersome and costly.

We've been looking at ways of trying to streamline the approach and still come out at the back end with high quality data. I'm pleased to say that I think we have come up with some modifications in terms of changing the questions we include on our census. We tested a number of new questions, and subject to cabinet approval of the final content of the census, which we expect fairly soon, these new questions would be included in the 2001 census.

This does a number of things for us. First of all, it allows us, I think, to look at reducing some of the costs. That was certainly the barrier, if you remember, back in 1996 when we couldn't carry out the survey. On the other hand, it also allows us to look at perhaps collecting a broader array of data on persons with disability from our other surveys, because we believe these new questions would be able to be used on other surveys we do, for example, the longitudinal survey of labour and income dynamics or the population health survey, to actually collect more data. So we're very hopeful that our proposed new methodology will work out on a number of fronts.

• 1545

We will be looking at some implications of changing the methodology. Whenever we change a methodology there may be some loss of comparability with the old data that we have in 1991. That's ten years ago, and it will be more than ten years ago. Overall we feel that loss is well worth the advantages we're going to reap from the new approach. Certainly I think our colleagues at HRDC feel very comfortable with the new approach we're doing and feel that it fits very well with the framework laid out in the In Unison report that allows us to address the priority information needs in this area.

[Translation]

In addition to working on the survey methodology, we have been working closely with officials at HRDC, who have conducted a comprehensive consultation to assess data needs of all levels of government as well as community groups.

Over 125 briefs that included many excellent suggestions were received. Currently the project team is developing possible questions that might be included in the survey to meet these user needs. In addition, HRDC is currently reviewing their own data needs from the perspective of the framework laid out in the In Unison Report.

Our plans for future work are to conduct a comprehensive test of the survey in the fall of this year. Based on this, we will then finalize the content for the survey and conduct the survey following the 2001 census in the fall of 2001.

The conduct of the actual survey is of course dependent on HRDC funding.

[English]

Although this work on developing the methodology and content of the survey has certainly been our highest priority and we're well on track, as I mentioned, to bringing on that survey next fall, we have been looking at the broader program of collecting information on persons with disability. I think at the committee meeting last year a number of the researchers who appeared before you pointed out that while the HALS-type survey provided us with information at census time, really it would be very useful to have data on a more frequent basis between the censuses. We've been working with our colleagues at HRDC on ways of doing that.

One of the things we've been looking at is the possibility of picking up in the HALS survey next year a sample of people who we would then follow on an ongoing basis, perhaps every couple of years. And this would allow us to really get very rich information on what's happening to people as they move through various stages of life. The so-called longitudinal survey, which we're now using with children and it's producing very interesting results, we feel has some potential.

At this point there's no final decision to proceed along that line. Our priority is still to get the HALS survey done, but in parallel with that we're looking at the possibility of the longitudinal survey. As I mentioned, we're already looking at including the new questions on other surveys. I think the survey of labour and income dynamics will include the new question, and a number of our other household surveys. So we're moving ahead on the broader program as well.

I think that gives you a brief overview of where we are. We're well on track, I'm happy to report. Perhaps I'll leave it at this point to pursue any questions you might have about the work we're doing.

The Chair: Thank you.

Mr. Forseth.

Mr. Paul Forseth (New Westminster—Coquitlam—Burnaby, Ref.): Thank you very much, Madam Chair.

I think you might have touched on this or at least alluded to it, but perhaps you can go over again and emphasize the main elements that I wanted to ask you specifically. How are you ensuring that the faults of the previous post-censal surveys have been corrected without losing the valuable information they've revealed?

Mr. Doug Norris: I'm not sure if you're referring to the faults or to the challenges we had in terms of the complexity of the earlier survey, or whether you're referring to other things that perhaps have been brought to your attention. I'm not aware of any major shortcomings to the earlier survey. My comments were really directed at trying to streamline that survey to make it more efficient, make it more cost-effective and allow us to do a broader range of information.

• 1550

We will be testing the new methodology very extensively this autumn to ensure that the switchover from one method to another really doesn't result in any major losses. We're quite confident that would be the case. It's more a sense of how we do the survey than what we do. The kinds of questions we're asking will be very similar to what we asked before.

In fact there are a number of new areas we're looking at developing—for example, the impact on family life in families that have a person with a disability. The costs of disabilities is an area that was weak last time, in the survey in 1991 we're looking at. And we're trying to get a fix on the transitions that people make, perhaps from school to work, or other kinds of life transitions.

We're trying to improve the content. We're learning from a number of the areas where there were data gaps and trying to fill those and at the same time work on the methodology, which allows us, as I say, really the potential to broaden the overall program.

Mr. Paul Forseth: Certainly we are in a continuous feedback loop, and the desire is always to sharpen the instrument we're using for better results. Maybe we'll take a little bit of a different tack and—

The Chair: Paul, I think Mr. Voyer also had a response to your question.

Mr. Jean-Pierre Voyer (Director General, Applied Research Branch, Strategic Policy, Human Resources Development Canada): I have a related comment. We do have a process to ensure that we are answering the right questions from the point of view of the communities involved, the province. In fact, all our data search and the research program we're trying to design from this data is inspired by In Unison, the federal-provincial document that identifies a series of priorities for the disabled community.

Doug Norris alluded to the consultation we've had with 125 organizations to ask them what matters to them, what they would emphasize. These are two sources of information for us in terms of determining the shape of the data collection or the information we need.

Mr. Paul Forseth: It's a a different tack, questions posed like this. Given that the Department of Human Resources Development has a very strong employment focus, how are you ensuring that all relevant non-employment-related data will be collected? For example, what about the ability of people with disabilities to participate in leisure time activities? How are you ensuring that all relevant non-employment related data will be collected?

Mr. Jean-Pierre Voyer: Let me mention to this effect that preliminary analysis of our consultation—and we don't have a final document yet—shows that in fact the community is mostly interested in two of the four aspects that were underlined in In Unison. The overarching principle in In Unison was full citizenship. It's a concept that links to your question.

Underneath that, there were components of supports to disabled persons, employment and income support. Consultations seemed to show that for the respondents, the organizations that responded, the focus seemed to be on the support side and on the employment side. But in the four areas, including the full citizenship concept, we're making sure that the survey is structured to have a series of questions to get this notion of how people participate in their community, society, and barriers to that, which are aside from the labour market.

We found, quite interestingly, a lot of emphasis on labour market and integration to employment. Mainstream, basically, is a concern.

The Chair: I think the committee would like to know if HRDC is the only department participating, or is Transport Canada? Somehow, we understand there's a bit of a fee-for-service model here. If departments aren't paying, are they involved in the question? I think we were a bit disappointed in some of the answers that came from Transport Canada. If they aren't participating and designing the questions, how do we ensure that these Canadians are obtaining full citizenship from these other departments?

• 1555

Mr. Jean-Pierre Voyer: I'm sorry, I misunderstood. Indeed, we do. First, we've developed over the last few years in the federal public service a practice of “horizontality”. We have a few institutions that we have created in the research community to ensure that we meet more regularly, that we exchange data, that we debate them in fact. That's been quite salutary in orienting the data needs.

Specifically, in this case we have a steering committee with StatsCan that includes people other than just HRDC, and we do have an interdepartmental committee at the federal level to look at the whole research program. Of course, you can't do research without the data, so that includes the data collection aspects and the data needed to answer policy research questions posed by HRDC from a perspective of employment or income support or transportation. Clearly, if it becomes a question of supports to the disabled, this is an issue they would have a say on.

The Chair: We'll go back to Mr. Forseth, but could you supply the committee with the departments represented in that interdepartmental committee?

Mr. Jean-Pierre Voyer: Sure.

The Chair: We've talked to eleven ministers, and there are still eleven more to come. We want to know which people actually are participating in this process.

Mr. Paul Forseth: I have a kind of off-beat question. I just wonder if you recall the book called Unobtrusive Measures. It came out in the sixties, and it's a treatise on how to get at measuring social service agencies and participation. For instance, if you're trying to evaluate whether a community drop-in centre is serving a clientele, it may be difficult for that centre to have someone standing at the door, clicking off who's coming in. But one of the unobtrusive measures is counting the number of styrofoam cups they're going through as far as their coffee is concerned.

There is a whole range of other ways of measuring utilization, so I just refer you to that old book. Maybe there was a whole host of others that came after it, but under that philosophy of unobtrusive measures, there's that tertiary way of getting at what we really want to find out.

Mr. Doug Norris: I'm not personally familiar with that, but I will look it up.

Mr. Paul Forseth: In fact I could probably dig it out of my old university library.

The Chair: I guess I still am not sure. How many departments are paying for HALS?

Mr. Doug Norris: In terms of the situation right now, as we understand it, HRDC has committed to the development money to develop HALS. They're the only department right now involved financially with the survey. As Jean-Pierre has mentioned, the other departments are involved with the content of the survey, but the funding of the survey is coming only from HRDC at this point.

Mr. Jean-Pierre Voyer: I can explain. The reason is that the ministry responsible for the file happens to be HRDC. When money or funds are allocated for a survey, they have to come from policy initiatives that usually are championed by the minister responsible. In this case, that's how we end up with having the key responsibility to manage this on behalf of the federal government with Statistics Canada.

The Chair: Is that the same as before?

Mr. Jean-Pierre Voyer: It has always been like that.

The Chair: I think the members of the committee were disappointed that families with children with disabilities weren't on the original children's agenda.

Whether it's health or whatever, we at this committee have a little bit of trouble with what the responsibility of the lead minister is and what needs to be picked up by the other ministries to do their part, I guess. Is it up to the lead minister and the interdepartmental committee to make sure HALS is useful for all departments?

Mr. Jean-Pierre Voyer: Absolutely. I cannot speak for my colleagues at StatsCan, but the production of data is firstly and foremostly a public good, so if there are areas that are not covered properly, the—

The Chair: So this interdepartmental committee is chaired by...

Mr. Jean-Pierre Voyer: It would be chaired by HRDC.

The Chair: Okay.

Mr. Desrochers.

[Translation]

Mr. Odina Desrochers (Lotbinière, BQ): Mr. Norris, you said in your presentation that you intended to change the questions and to improve methodology, and you mentioned that all these improvements you want to make would require additional funding.

• 1600

In the answers Mr. Voyer gave to my Reform colleague, he did not mention the amount that was set. Have you evaluated the requirements? How much will it cost to respond to the demand you will shortly be making to Statistics Canada in order to be in a position to target the matter being discussed today? How much will that cost?

Mr. Doug Norris: How much will the survey cost in all?

Mr. Odina Desrochers: Yes. And in addition?

Mr. Doug Norris: The second part, the survey itself, will cost some $11 million.

Mr. Odina Desrochers: And how much did it cost the last time?

Mr. Doug Norris: I think it cost $13 million.

Mr. Odina Desrochers: It cost $13 million then, and now the cost will drop to $11 million?

Mr. Doug Norris: I think so.

Mr. Odina Desrochers: You have improved the methodology, changed the questions and made changes to the informatics service. How do you justify the lower cost.

Mr. Doug Norris: Because of the changes in methodology, we need fewer people. It is a bit complicated...

Mr. Odina Desrochers: I do not want to go into the specifics, I want to keep to the general.

Mr. Doug Norris: The last time, we surveyed 50,000 people, but most were not disabled. We have to ask questions to find people with disabilities. This time, with the new questions, there will be no need to survey 150,000 people; it will be possible to survey about 30,000 people. So, a lot fewer people are involved in the survey this time, which cuts the costs.

Mr. Odina Desrochers: Will your proposal reflect the current reality of people with disabilities?

Mr. Doug Norris: I think so, yes.

Mr. Odina Desrochers: Have you had a response from the department on the money you mentioned? Is it currently being negotiated?

Mr. Doug Norris: Perhaps Jean-Pierre Voyer could answer that.

Mr. Jean-Pierre Voyer: This year, we have found the means to finance part of the development. At the moment, the big question is whether funding will be provided for future years.

Mr. Odina Desrochers: How much have you invested this year?

Mr. Jean-Pierre Voyer: We have invested some $900,000 this year.

Mr. Odina Desrochers: Now, with what Mr. Norris has asked for, are you in a position...

Mr. Jean-Pierre Voyer: We expect it will cost about $11 million to conduct the survey Mr. Norris mentioned.

Mr. Odina Desrochers: And what will your share of the $11 million be?

Mr. Jean-Pierre Voyer: It will be $11 million.

Mr. Odina Desrochers: You will be assuming all the costs?

Mr. Jean-Pierre Voyer: Absolutely.

Mr. Odina Desrochers: That is all I need.

Thank you very much.

[English]

The Chair: Wendy.

Ms. Wendy Lill (Dartmouth, NDP): Thank you for coming in.

I'm interested in the figures you mentioned of 50,000 and perhaps 30,000. It just raises for me the question of how you do this. Do you actually try to survey every person with a disability in the country? The census is all about getting the data on every single person in the country, so I'm wondering why the HALS survey isn't about getting the data on every single disabled person in the country.

Mr. Doug Norris: You're right, the survey itself does not survey the total population of persons with disability. To try to do that with the amount of information that seems to be needed would be extremely expensive. I don't know how many hundreds of millions of dollars would be needed.

We feel that by surveying a scientific sample of the population, as we do with most of our topics, we can generalize those results to the total population of persons with disability, and I think our track record there is quite good. That not only is a much less costly endeavour, but in terms of the burden we put on people to answer all these questions, I think it is also much more acceptable to the Canadian population.

So we don't go to everyone with the survey itself. It goes to about 30,000 in total, which is about the same as we did at the end of the survey last time. As I mentioned in the previous question, last time the methodology required us to start out with about 150,000, but about 120,000 of those people were not persons with disability. To find the 30,000, though, we had to go to a large number. The actual size of the population we survey and base our information on is about 30,000, and that's the same as it was last time.

• 1605

Ms. Wendy Lill: I guess I'd like to follow up on what Carolyn had to say about our concerns about this being skewed toward HRD because it is HRD-driven. We worry about issues such as leisure, income supports, transportation, educational supports, and disability supports. There are so many areas in which it would be useful for agencies and government departments to understand more about people with disabilities and the conditions that are facing them. I just want to know how we can make sure these issues are all being dealt with.

Also, I'm concerned about the relationship between the provinces and the feds on this. We are now in an age of social union, and there's supposedly a lot of cooperation going on. How are the provinces involved in this? That would be another question.

Mr. Jean-Pierre Voyer: In terms of your concern that the HRDC focus may be too narrow, I should assure you that this is not the case. As you well know, HRDC is a creation that dates back with many constituencies, basically. It has people who were working in the health department, some who were with employment and immigration, some who were with the secretary of state, and some who were in education. The collection of all this history means that within the department there are all kinds of interests and concerns that are well represented. Sometimes they come from one specific program area, and sometimes from another. We could have two programs that are interested in the disabled and belong to different parts of the department, but with different concerns.

On the question you mentioned about leisure, education, and use of time, they are in a survey right now. All I indicated earlier is that from the consultations with the NGOs representing disabled communities, the focus on employment and supports—not necessarily a traditional area for HRDC only—came out.

In terms of ensuring... there will be a pilot before we go on with the main thing. Before we invest all the money dedicated to that, there will be a pilot and the questions will then be available. Perhaps the committee may want to consider having another discussion after the date when the questionnaire is completed in order to address your concerns.

With respect to federal-provincial, as I said, we are inspired by the framework provided by In Unison, which is a product of the collaboration between the federal government and provincial governments, and through our consultation we've also seen a lot of support from the provinces in terms of us proceeding.

Everyone wants to see the data, so we're drawing a lot of support from the provinces in that respect. We intend to produce the data. Certainly the demand is for provincial data, and often sub-provincial data at a level of disaggregation.

The Chair: In the commitment that we've made to portability and mobility with the disaggregated data, is it possible to make comparisons in terms of disparities, in terms of supports and services from province to province, based on the next HALS?

Mr. Doug Norris: The survey will be able to provide us with data at the provincial level, and one would be able to look at differences between provinces, yes.

The Chair: Wendy, did you have another?

Ms. Wendy Lill: I'm just looking at the graphs at the back of In Unison. It would be very interesting to know whether or not we're looking at a different picture now in terms of the different kinds of disabilities. You've defined them as speaking, seeing, hearing, mental agility, and mobility. I'm not sure, but are those the ones you're going for again, or have those definitions been refined over the years now that nine years have passed? You say you're working with different groups who are representing persons with disabilities. I wonder if they have a more refined idea of how to get this picture.

• 1610

It's just a thought, because I think this is what the committee has been concerned about, that there are lots of people who don't fit in those, or fit in all of the above—for example, somebody who is very sick with AIDS or hepatitis C. I guess I've been concerned not only with whether we're going to measure it the same way in terms of those indices, but also in terms of severity, because, as you know, for cystic fibrosis people, breathing isn't listed there. Once they get breathing in the day, they actually are fairly mobile.

We are concerned whether the filter question, or the triggering question, let alone the “hows”, is really uncovering the people in this country who are not able to have full citizenship because of what really is a disability. Maybe it's not a disability in their minds, because it's like asking women whether or not they're on any medication. They say no, yet they take the birth control pill everyday. To them it's not taking a medication, it's just the way they live.

We're really concerned that the “hows” be applied to as many Canadians as possible and that we actually do have a real picture. I think Wendy's question about the bar graphs shows that it isn't really the way a lot of people live their lives. Are there people counted in many columns? Are we double-counting people? I don't think we know what we're looking at.

Mr. Mike Sheridan: Let me say on that one that with your example, this is a really complex issue to measure and has been for some time. Quite honestly, I think we've made significant progress in this since we first began in the early 1980s. We've been at it for twenty years. I'll admit that I don't think we have come to a system or classification that enables us or permits us to identify every possible sort of physical condition or health problem that would precipitate itself in a limitation to daily activities.

That, ultimately, is what we calibrate ourselves on, as in the World Health Organization model. As you move along that continuum of either going from a health condition that causes you problems to a healing process or vice versa, the grouping of the data, the objective of what we're trying to do, is to find at the lowest common denominator the particular issue that impacts on that person's activities and ability, as you say, to participate fully in Canadian society in “a healthy context”.

So this bar chart you refer to is simply one way, one aggregation, one possibility of grouping data to look at them. There are certainly numerous other ways of cutting the data and information, and one could almost as easily look at this in terms of the condition and how many people are suffering some impairment as a consequence of, for example, having asthma or some other long-term physical condition or health problem.

So your point speaks to the issue of whether these are the right aggregations. That's a really good question. I think it depends upon the question that is being put forward, and I think that our goal in designing the survey, certainly with our federal and provincial partners in the organization, is to find the best set of disaggregated information that will leave us in a position to be flexible to aggregate this into numerous and different outputs, depending on what the required use is at the end of the day.

Ms. Wendy Lill: That's very interesting.

I would like to pose a question. We all around this table know that there are many people who collect social assistance because that's the only way they can get the pharmaceuticals they need to deal with their disability, whether it's AIDS, Gulf War syndrome, all sorts of things. This is very interesting. It's interesting to get at these people, right? We have to figure out who they are. It seems to me that all sorts of policy really hinges on this pocket of Canadians who are absolutely not getting equal citizenship, who probably would prefer to be working but instead have to stay on welfare or they will not have the pharmaceutical drugs they need to continue to function.

• 1615

This is a researcher's dilemma, but it's a real challenge. We know we want that one dealt with, and I'm sure a lot of people on disabilities want out of that juggernaut. They don't want to have to live that way. We have to start designing programs that will allow people to get their disability supports and be able to work to whatever extent they're able to. We need to know how many people are in that kind of situation and we have to gain the ammunition to move us ahead to a better state of policy.

The Chair: Nancy.

Mrs. Nancy Karetak-Lindell (Nunavut, Lib.): Thank you. I'm sorry I came in a little late. If I ask a question that someone's already asked, excuse me.

In regions like my territory of Nunavut, how does a group that's working with disabilities help Statistics Canada pose questions that will help them with the type of information they need? Is there a role for organizations to submit questions to Statistics Canada so that they're getting the information they need to work with people with disabilities? That's one question. If so, is there also a role for them to do that work on behalf of Statistics Canada so they are getting all the questions answered?

The background for my question is that you talk about provinces a lot in answering the questions and you don't mention territories. I know our numbers are often too low for Statistics Canada to include us, unfortunately. I find that the groups that are trying to work don't have all the statistics as to how many people they are dealing with. Again, maybe that's because we're not asking the right questions.

Also, how do we find out about the availability of training for people with disabilities? Are you measuring that? If so, how are you doing it? Those are my three questions.

The Chair: I would also commend the witnesses for the fabulous audit Nunavut has done, where they've actually mapped every single person with a disability in the territory. It is a fantastic piece of work. It would be interesting perhaps for your department to look at their audit and just see what themes and trends are there with this huge problem in such remote communities. Right, Nancy? It's a good piece of work.

Mrs. Nancy Karetak-Lindell: Yes, but they do that with their own funds usually. Right? I'm trying to see how they can—

The Chair: Right. But also, to see what these people would make of it would be interesting.

Mr. Doug Norris: If I could just add to that, first of all I would apologize for saying “provinces” and not adding the territories. That is a mistake and it's not meant in general to be restricted to the provinces. That's an oversight on my part.

I would like to say that we are looking very seriously at how we collect information in the northern territories. Because they are small, they present us with real challenges. On a number of our surveys we have looked at new ways to provide much-needed information. In some cases it may in fact be different information too. Sometimes we can't take the questions we design for the south and apply them in the north.

We're starting to learn, by working with people from the north, how to ask relevant questions for their own population on a variety of surveys. We're even doing things a little bit differently in the territory. The suggestion that was made is a good one. If in fact there is a map in Nunavut of people with disabilities, that could in fact be used to carry out a survey. It could be a very efficient way for us to work and carry out a survey, and it's certainly something I will pursue.

• 1620

We're looking at the possibility of surveying the north a little bit differently than the south for a lot of the reasons you mentioned. We need a larger sample and there are different issues. That is an issue that is getting a lot of our attention. We're going to be carrying out a large survey of aboriginal people in the north. We're working very closely with the territorial government on a special survey of Nunavut that would be adapted to Inuit people. I'm very optimistic that, perhaps for the first time, we'll be able to produce some very specific data tailored to the needs of the territory.

We're making progress, but I would agree with you that we have a long way to go. It is a small number of people and we have to remind ourselves that we need to deal with that, not forget that. I think we're on the right track.

The Chair: In the post-census aboriginal survey, are there disability questions?

Mr. Doug Norris: Yes, there are. In addition to being in the persons with disability, there were last time... The survey is not final; neither of these is final. I believe they're looking at disability questions in the aboriginal people survey as well.

Mr. Jean-Pierre Voyer: I just want to join in the remarks of my colleague. À l'unisson is a federal-provincial-territorial... It just gets long to say, and we have a tendency to skip the territorial part. We apologize for that.

In terms of our consultation, several groups actually responded to our consultation, one of which was from the territories: the Northwest Territories Department of Education, the Northwest Territories Council for Disabled Persons, the Government of the Northwest Territories, the Yukon Council of Disability, and the Yukon government. So we had six groups that took time to tell us what their priorities were at this juncture, at this time.

The Chair: How would the disability answers for the aboriginal post-census survey be meshed with HALS? When you have those two pieces of work, how do you—

Mr. Doug Norris: We certainly would want to try. What would be on the aboriginal people's survey would be a subset of the questions related to disability. We may also carry out the HALS-type survey as well, so there may actually be two sources of data. We'll want to make sure we can use those together with one another, and that's a challenge. Last time, we felt the data we collected from the aboriginal people's survey was reasonably consistent with what we got from HALS and we used it in some comparisons.

The Chair: Thank you.

Did you have another question, Nancy?

Mrs. Nancy Karetak-Lindell: I have that one question about the training. If they do it, how do they measure the availability of training for people with disabilities? How would I find that out?

Mr. Doug Norris: I'm not familiar with the content of the survey and the questions we may be looking at around the issue of training. It's something I could certainly follow up on. I would think it's very likely that it's one of the topics being considered within the HALS survey. As I mentioned, that content is now under development, but we'll certainly take that suggestion under advisement and look at the questions around the training issue.

The Chair: Mr. Forseth.

Mr. Paul Forseth: Thank you very much.

I suppose the gentrification of society is a demographic reality in our destiny. It certainly has implications for the Canada Pension Plan, disability claims, and the disability tax credit. The costs and the predictability for these must be based on good data.

Given the linkages between an aging population and disability, do we have surveys on people with disabilities, even longitudinal surveys, to assist in devising policies to deal with our aging population? Maybe you can just talk a little bit about where we are and where we're going concerning the aging population and disabilities and the implications for policy development.

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Mr. Doug Norris: Certainly the HALS survey itself will provide some of that information, but in addition, we're looking right now at the whole issue of our aging population and what survey needs there will be to track people as they move out of the labour force into retirement, into different activities post-employment.

We don't have any specific survey on that now, but it is something we're looking at. In addition, our population health survey, which is a longitudinal survey tracking people over time, is also collecting data from a health perspective on persons with disabilities. So I think information on this topic is available from many different surveys.

One of the things we're doing now is looking at these different surveys, at whether there are gaps still there and at potential ways of filling those gaps.

Mr. Jean-Pierre Voyer: I would add that we are considering the addition of a longitudinal survey to HALS to get at some of the issues you mentioned, because indeed HALS is a picture at one point in time. To understand the dynamics of any issue, whether it's disability or poverty, we have found out from our social research over the past few years that on a lot of the topics we're discussing, or status, poverty being a good example, when we have the right data and we start looking at longitudinal data, they're full of dynamics. People don't stay put forever. They go in and out. In a way, it's the same thing as unemployment. There's always a category of citizens who are in this situation in a prolonged way, but it's a small fraction, for instance, of people being poor for more than four years continuously.

It's the same for disability. We found out from earlier analysis that because there are different degrees of disability and different degrees of severity, people don't report their disability in a constant way. So we need those longitudinal data. There's a trend in the research and academic community to create more of these, and we're certainly interested in supplementing HALS.

The problem with disability data is that we were so far behind, in terms of the picture, that we have to do HALS. But after that, we should do as we do in other areas of social research and start thinking about longitudinal data, and part of the funding we're considering would cover some of these longitudinal surveys.

Mr. Paul Forseth: What I said was, on the destiny of our demographic character, we certainly need to put more resources into looking at that. I recall the decision a number of years ago to add the disability section to the Canada Pension Plan, and the predictability about the tax expenditures or whatever it was cost, and seeing now, in retrospect, that they were so far off; they had no clue.

Even in the riding, as a member, that is one of the issues. I get a lot of people coming in the door, because it's a concern for them. They're fighting to get something. It's a boundary of controversy, and certainly we need a lot better data about our aging population related to whether it's this program... or the data might show that we maybe need to get rid of what we have and get something much more comprehensive.

I'm hoping it's more than just a consideration, but that is our reality. So if that's where the demographics of our country are going, we'd better get there.

Mr. Jean-Pierre Voyer: I will add that we have an interdepartmental committee right now on aging of the population, again, a community research across departments, including Health, HRDC, and Finance, where we're looking at those, trying to get some... not foresight, but it's more than blue sky. It's basically asking the tough question, what's going to happen in ten or twenty years?

Just lately we had a special day with Statistics Canada looking at our database and at what existing data sources can help us answer some of those questions and pressures of an aging population.

Of course, there's the problem of disability and the fact that people tend to have more disability, although that's another issue. We find that people live longer and healthier now, so you cannot automatically associate disability with age. Nevertheless there is a series of new questions, a new way of looking at things. In that committee we're on the ball, and we're basically trying to do what you suggest we do.

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The Chair: So this means that most 90-year-olds will have some help or limitation, so the work that you're doing is separating out a little bit the natural aging process in terms of limitation from actually disabilities that come from other causes. Is that correct?

Mr. Jean-Pierre Voyer: We're not going to help determine that, of course, but in a sense we're trying to look at it. There's an area of uncertainty with respect to how an aging population will affect health costs, because we cannot merely take the costs of today and say that given the demographic pressure the health costs will be such and such, because there are elements of improvement that may reduce the per capita.

So even though we have an aging population, with the life expectation increase the cost per person may not necessarily increase. I think the consensus now is that what drives the health costs—and I'm out of my field here—from an aging population perspective is much more the costs of the service of technology than the demographic pressures.

We're trying to sort these things out and to have a better picture, and trying not to panic over the aging phenomena, if I can say so.

The Chair: Wendy.

Ms. Wendy Lill: I think it's such a daunting task, and I'm really glad you're doing it, but I have more questions as I think about it.

You've heard this a million times, but the kinds of questions you ask are going to determine the kinds of answers you get. We know that. If we are looking for data, I would say the persons-with-disability community says over and over again that they want a system that will allow income supports that are not attached to employment or to the disability supports they need.

We need ammunition. They need ammunition that will move us in that direction. So the question I'm trying to get at is how do we make sure that the information we're going to get is going to be the information that's going to be needed to move in the direction in which everybody is saying we want to go? We simply want to make sure that this data is going to prove the point that we feel is out there, and it's been said over and over again.

I'm very inarticulate on this point. Can somebody help me out?

The Chair: I think what you're saying is the information we want probably is a longitudinal survey. The gap that's taken place in terms of this ten years has been difficult for planning, and whatever we can do to help you make the case for the need for a longitudinal survey or what... I think this is what I'm hearing, that we should do whatever we can do, in a proper longitudinal fashion, to track this special population.

Mr. Jean-Pierre Voyer: The way we're going at this... And I'm glad you say it's a daunting task, because it is always a daunting task, and you're perceiving what we usually perceive at the beginning of an exploration of a new issue when we say oh boy, we've found out that there are more questions.

In the methodological approach we're taking, the scientific approach we're taking to these issues, we don't say let's go there and collect data to find out more. That's part of it. And a lot of people are telling us that we've not been at it for ten years, and we should go back and ask questions. We're saying what are the hypotheses that we want to test in terms of what matters and what can make a difference? If we don't ask these questions first, we're not doing our job properly.

Once we have those kinds of hypotheses laid out—I think it's in those terms you're speaking—and we do that with the community, with academics, we go with a model and we know what the variables are, what the phenomena are we want to collect data on, whether to affirm our hypothesis or reject it.

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And these signals we get from all the stakeholders, the policy-makers and people like you here who tell us this is what we're interested in. That's why we had these consultations. There's still some time between now and when the surveys run to do that.

The Chair: I'm also interested in prevention. So is there something in the survey that actually finds out the cause of the disability and if we're making any moves on some of the ones caused by accidents or by scatter rugs? Scatter rugs is one of my favourite problems at the moment. I go every week out to the cottage and collect them all and put them in the garbage.

The scatter rugs and broken hips and this person's never independent again study out of Sunnybrook was something I couldn't quite imagine we could be missing the boat on. It's practically like seatbelts in what we ought to be doing.

Is there a place in the survey to figure out the percentage of this population where it could have actually been prevented? I think we understand the risks with prematures and multiple births, and I don't think anybody wants to call those preventable until we can get better at doing what we do. But how do we find out really that big piece that could be prevented in terms of planning for the future? If we could take out a group of neck injuries or a group of whatever, how do we plan without that data? Or do we have it?

Mr. Doug Norris: We do, I think, ask—in the 1991 survey it was there, and probably in 1986 as well—the cause for the disability. So we'd be able to look at the kinds of things you're mentioning. I don't know what the breakdown is. I suspect there may not be enough in the sample of people with the rugs, for example, to really be able to study that in detail. It may be more frequent. But we do ask the information on cause and would be able to start to look at that.

The Chair: We're supposed to go and vote now. So if you want—

Mr. Jean-Pierre Voyer: I would mention that the survey is not the only way to respond to this. There are other ways to look, such as case studies and experiments. So we shouldn't ask too much from the vehicle, because it has its limits, of course. But the question should appear in our research program, nevertheless, and we should look at other ways. And we could link to other databases, like the national longitudinal survey of children and those sorts of things, to get at this aspect of prevention.

The Chair: Lastly, what for you is a perfect filter question? Or how are you coming along on the perfect filter question?

Mr. Mike Sheridan: I think you've hit the nail on the head, and there is no perfect filter question. I think we're still working on it. I think we're pretty close. I'll let Doug handle that.

In the end, I think just today we've identified five or six potential issues we haven't perhaps looked closely enough at. Our problem is at some juncture we need to make a real set of serious decisions about two things: one, prioritizing what the information needs are, what are the key pressing information needs now, given this large gap without any information; and two, how much can our respondents really tolerate in terms of the number of questions and the amount of time we can actually allocate to this interview and still get through it.

The Chair: The committee would offer our assistance in any way we can. I think we do feel that sometimes in terms of 125 groups that are consulted they sometimes are the usual suspects. And the people who we, in our constituency offices, hear from are the people with either cyclical illnesses or things they feel they've not been consulted on. Whatever we can do to make sure that this is as broad and as useful as possible... We would be happy to have a look at any of the questions or the survey and put maybe unusual suspects together to look at it for you.

Thank you.

The meeting is adjourned.