SPER Committee Meeting

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

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

EVIDENCE

[Recorded by Electronic Apparatus]

Wednesday, June 7, 2000

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[English]

The Co-Chair (Ms. Carolyn Bennett (St. Paul's, Lib.)): We're going to call this extraordinarily special meeting together, the joint meeting of the Sub-Committee on the Status of Persons with Disabilities of the Standing Committee on Human Resources Development and the Status of Persons with Disabilities and the Sub-Committee on Children and Youth at Risk of the Standing Committee on Human Resources Development and the Status of Persons with Disabilities.

We are thrilled that you're all here and that we will obviously, by the end of today, have what needs to be done all sorted out and just be able to motor along this summer and make sure it all happens. As in so many of these things, there's the what we want and the how we're going to get there, and I hope we will be able to share all of that this afternoon. Along the lines of how we get there and where we move from there, my fantastic co-chair, John Godfrey, will fill us in.

The Co-Chair (Mr. John Godfrey (Don Valley West, Lib.)): There's just one thought. It's very important that we not lose the momentum as we move into the summer period, and I have this little surprise to spring on the chair of the main committee. I hope he isn't going to be appalled by what I'm about to suggest, or totally astonished, but we have been talking—we co-chairs of subcommittees—and we would like to propose, I hope with the consent of the membership of our subcommittees, that in the fall each of us present a round table to the main committee with some of the stakeholders and a kind of statement about where we are as a result of the work we've been doing through the winter and the spring. And that way we can both inform the main committee of what we're doing, perhaps point to future budget directions, and maybe help the work of the main committee as it moves ahead. I think it would add a certain neatness, if that doesn't strike anyone as objectionable.

So we are petitioning the main committee to receive us. I hope this is now officially on the record.

Mr. Peter Adams (Peterborough, Lib.): Mr. Sub-Chairperson, it would be a pleasure.

The Co-Chair (Mr. John Godfrey): Now back to the matter at hand.

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The Co-Chair (Ms. Carolyn Bennett): As we are now working in terms of the study on the future of children and youth in Canada with particular reference to children with disabilities, we all know there are a number of things happening downstream from a budget piece, to hopefully a deal on a national children's agenda, to hopefully a plan through the Social Union Framework Agreement for all persons with disabilities. I think we felt very strongly that we didn't want children left out of a disabilities plan and we didn't want children with disabilities, or families with disabilities, left out of a children's agenda.

We are delighted to have you all with us today. We hope it will be informal and that people will be able to respond. We're truly lucky to have, from the Department of Human Resources, Marta Morgan and Deborah Tunis; and from Health Canada, David Fransen and Heather McCormack. What we found last week with the round table on disabilities is that sometimes it is appropriate just to take a response, even after the opening remarks, before we move to the next opening remarks, if there's something that needs to be clarified right then.

So I think you've drawn your own lots, and Dawn Walker, from the Canadian Institute of Child Health, their executive director, I believe will speak first for five minutes or so.

Ms. Dawn Walker (Executive Director, Canadian Institute of Child Health): The initial 20 minutes that we had talked about, which then went down to 10 minutes, has now gone down to five minutes, so this is going to be a really quick review.

I'd like to thank you for inviting us here. I am the executive director of the Canadian Institute of Child Heath. I am going to talk a little bit about the data in terms of the numbers and within the context of the CICH profile, which is called The Health of Canada's Children, and then I'll look to my colleagues to talk about a number of issues within that data.

You've all been given chapter 9, the “Children & Youth with Disabilities” chapter. You'll notice it has “draft” and “embargoed” on it, and in fact the officials who received their copies yesterday received it with edited comments on it. Today you have received, fresh off the press, the most current, and I'm going to go through that.

There was also an orange flyer that talks about The Health of Canada's Children, and this is the third edition that the institute has put out with substantial support, and involvement and participation, by a number of federal departments: Health, HRDC, Justice, and Environment. So it is a collaborative work, which takes about a year and a half, looking at all the national data, some regional data, which is compiled in one book and published every four or five years, called The Health of Canada's Children.

So what I have done for today is brought some of the data on this chapter. Both departments have copies of the entire chapter and it is available, but as you can see, it's in the format now of being desktop. It's going to be released on August 22.

[Translation]

The Co-Chair (Mr. John Godfrey): I should say, for the benefit of French speakers and readers, that the French version is to be found at the bottom of each page. That, unfortunately, does not apply to the tables.

[English]

Ms. Dawn Walker: I apologize for the tables not being translated, but the decision was that we couldn't get them off the computer and get them downloaded and we felt we needed the most current stats.

The other thing I wanted to mention is that the Canadian Institute of Child Health is also a board member of the Canadian Coalition for the Rights of Children, which has just put out the NGO report to the UN. It has a substantial chapter on children with disabilities, and it's worth while for this committee to also have a review. You've all been sent these, so you should have them.

I'll quickly go through some of the data so you have an understanding of the scope of the number of children we're talking about. The very first chart in the book actually says that we don't have very good data on how many children there are. We had to use the 1996-97 national population health survey because we did not have any more recent national information other than the HALS survey of 1991.

We are extremely pleased with the involvement that we have had to date with the development of the new HALS for children and cannot speak strongly enough about how this was needed. We thank the government and the department for carrying forward with this. The consultation process as it pertained to the children's part of the HALS survey has been quite exceptional.

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We are concerned that the department has enough resources to carry out the HALS survey, as discussed and developed and tested with the NGO sector. Because we had to use the national population health survey, we feel that the numbers are probably consistent to the ratio that was in the 1991 health and activity limitation survey. You can see that we are talking about approximately half a million children.

If you go on further into the next chart, you'll see that we are looking at the proportion of children and youth who report having a chronic condition by age, group, and gender. A substantial number of children—40% of males aged 15 to 19 and 49% of females aged 15 to 19—reported having some sort of chronic condition. This included diverse health problems such as allergies, anemia, arthritis, asthma, attention deficit disorder, juvenile diabetes, and the list goes on. But this is to point out that there are substantial numbers of children with a variety and number of disabilities in this country, and that we really need to consider this.

Going on to the next one, which is a great big question mark, you'll notice these have little numbers on the sides. This one has 9.4. That means you only have a very small subset of the data of this chapter. If you have a particular interest and you really want the whole chapter prior to its release, let me know and we can get it to you, and we can get those desktops cleaned up. Officials in the departments do have the entire chapters in rough form.

Children with complex health needs: Where are they? What are they? What do they need? We do not have any national data on this. It's a big question, and when the profile is released, we will be asking about this. And the HALS will not capture this data as well at that level.

Source of household income by activity limitation status: You can see what the income breakdowns are here, but I'm sure that my colleague Sherri will speak to this more specifically.

Then there is the number of times parents or caregivers identified gaps, difficulties, or barriers to home-based care for medically fragile children. This actually was my research a couple of years ago when we were talking to parents about home-based care or community care, long-term care, home care. And we found that the majority of parents talked about two things a number of times. One is funding issues and the tremendous amount of bureaucracy that parents of children with disabilities need to face, and the second thing was the need for respite care.

You can see the rest of the list. It goes on to respite care, which is a big question mark. We are trying to address some of these questions in the HALS survey. It is certainly a number one concern of parents, but it's something we know very little about. We know much more about respite care in seniors than we do about respite care for children.

Moving on, we come to children with disabilities and care of child welfare. You can see that the child welfare system has a large number of children with disabilities who really need to be considered, particularly those who have FAS/FAE.

Moving on, we come to children aged 4 to 14 and 15 to 24 in terms of general health status. You will see that the general health status of those with an activity limitation is not as good as the general health status of those without an activity limitation.

Finally, looking at children with activity limitations and their mental health, you will see again there's almost a 4:1 ratio all the way down the line of injury by suicide, attempted suicide, emotional distress, low self-esteem, and history of abuse.

Finally, there is the last question mark, the impact of disability on day-to-day activity, day-to-day life. It's a huge question. Who do children with disabilities play with? Where do they go to school? Who do they spend their time with? Who takes care of them? Do they go to camp? Do they not go to camp? Can they get to all the parts of their own houses that they live in? It's a big question.

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We are very pleased with the discussion we've had on the development of health. Some of these questions will be talked about, and hopefully we can collect some data on where children with disabilities are spending their time and to what level they are being included in Canadian society.

The Co-Chair (Ms. Carolyn Bennett): Thanks very much, Dawn. That was terrific.

Our next witness is Sherri Torjman, who's the vice-president of the Caledon Institute of Social Policy. Sherri's well known for her interest in the disability area and also in kids.

Welcome.

Ms. Sherri Torjman (Vice-President, Caledon Institute of Social Policy): Thank you very much, Madam Chair. I really appreciate the opportunity to appear before this committee today.

To be honest with you, at one point we were very worried that children with disabilities were being left out of the children's agenda. For one thing, they weren't mentioned on the children's agenda in anything we had heard or seen. And second, some of the language that was used in some of the descriptive documents appeared to be exclusionary, even though it was not deliberately so. We were quite concerned that it could have been exclusionary by virtue of the fact that it discussed certain things, such as outcome-based measures, that could leave out children. So we're very pleased that you have called this meeting and we're delighted that this in on the agenda.

Just before starting, I want to thank you on behalf of a friend of mine who passed away this week. She was the mother of a son with a disability, and her name was Joan Brinning. She worked for many, many years—more than forty years—trying to bring forward issues about people with disabilities and the needs of families. So I'd like to mention her and, on her behalf, to thank you as well.

I want to put my remarks on children with disabilities in a certain context, because at the Caledon Institute we have put forward a proposal about early childhood development. I'll just speak to this very briefly, but it's important to state it so that you understand the context of my remarks.

We released a report in February 2000 entitled Ottawa Should Help Build a National Early Childhood Development System. In that report we talked about the need to have federal investment to encourage a system that would be quite comprehensive throughout the country, that would respect provincial jurisdiction and variability, but that nonetheless would have some important key pieces in terms of early learning and care and child development. We talked about the need for principles to be followed, including comprehensiveness, accessibility, quality, accountability, and universality. We talked about some of the best practices we would like to see in that system. I don't want to go into any more description, other than to say that's the backdrop to my comments today on disability.

There are many major streams of activity, but I'll mention two. I'd like to just talk about one of them but mention the other.

If you have in place a very high-quality system of early childhood development in the country, it's a very important way of identifying children who may have certain developmental, learning, or communication needs. It's an excellent way of identifying those children at an early stage and providing some assistance or remediation. So there's an important preventive component.

My remarks, though, will focus upon the inclusion component of the early childhood development system, to ensure we can include children with disabilities in whatever is set up. Whatever negotiations happen to take place and whatever actually comes about as a result of these discussions, we want to ensure children with disabilities are included.

I just want to put forward very briefly what that might mean, because in our view, every child is special and every child requires some form of individualization, but there are some children who need some extra assistance in terms of being able to communicate, learn, participate, or carry out some of the activities of daily living. It's those children about whom we're concerned in this discussion. They may need a technical aid or a piece of equipment, or they may need some extra assistance. Sometimes that's specialized assistance; sometimes it's not. Sometimes it's just extra help available. They may need some form of environmental accommodation, and by that I mean both physical premises and programs. So that's really what we're looking at.

In any system of early childhood development, as I said, regardless of what it looks like at the end of the day, a fundamental principle of that development is inclusion. We want to try to ensure children with disabilities can be included in any program, in any service, in any support that is set up. And as I said, that includes physical inclusion as well as programmatic inclusion. To do that, very often we need special training for people working in the system; we may need access to extra people, just to provide extra support; and we also need funds that would help in terms of physical accessibility.

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Over and above inclusion, we're looking at children who may have additional needs, and then we're talking about accommodation. There are several ways we can go about accommodation. First of all, it's possible to provide extra funds to any kind of program in order to ensure accommodation for the needs of a particular child. Another route you might want to take is to help parents offset the costs of any special assistance they might require. Ideally what we're trying to do is ensure an inclusive system and move as far as possible in every single service to ensure inclusion.

But as I said, over and above that, there will always be children who have some kinds of additional needs, and the question is, how do you do that? How do you meet those needs? We do have the policy levers in place to do that. We can make available extra assistance through grants and we can help offset costs for parents.

An inclusive system though also includes special programs. It doesn't mean we don't have special programs where appropriate. Certain provinces in fact have special programs for children with developmental disabilities—with hearing impairments, for example. If they choose to support those kinds of extra programs, that certainly would be part of our vision of a broad and inclusive system.

The last component of the system I'd like to talk about is respite, and Dawn made reference to this in her presentation, but respite for parents. Often parents are left out of the discussion, and their essential contribution to early childhood development is not recognized.

I should say a high-quality, accessible system of early childhood development services would in fact partly meet this respite need, if these good services were in place. But it wouldn't replace nonetheless the need for some extra assistance for parents who sometimes are working around the clock trying to provide support to their children. So I just want to make sure the needs of parents are not left off the table.

What are the policy levers here and what can the federal government in particular do? As I mentioned, in the proposal we made with respect to an early childhood development system, we talked about a federal contribution, a federal investment, that would then help lever provincial money and other money to be contributed to the system. Those federal dollars should come along with conditions, inclusion being a major condition or principle.

In addition to that federal-provincial work, there are several things the federal government can do to promote this agenda, to move it along, and to actually be able to do something in the near term if in fact we have extensive negotiations around a larger system, and those include the following.

There could be continued investment in programs such as Better Beginnings Better Futures. There could be investment in demonstration projects around respite care and family matching and family caregiving. There could be a short-term access fund, for example, that would provide money for both modification of programs and retrofitting of premises so that we can ensure accessibility. And then several changes could be made to tax measures that would be of great assistance to parents in particular.

I wanted to mention the fact, by the way, that the year 2000 budget had some very important changes made to the tax system. I would like to say congratulations to the committee for having put forward these proposals, because they will be very helpful to parents.

Some changes were made to the disability tax credit to allow a maximum of $500 in additional money to be claimed in respect of children who are eligible for that credit. An extra amount is provided to parents for the child care expense deduction, up to $10,000, if their child qualifies for the disability tax credit. And some of the provisions of that disability tax credit itself have been made more generous in terms of eligibility.

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Those are very important changes. They're modest; I think they can move further. And I'm worried that most parents probably don't even know they exist, because there certainly wasn't very much publicity around them, and it is important to give parents some additional assistance.

The medical expense tax credit is one area where we might be able to help parents, the disability tax credit can be changed to ease up the eligibility criteria somewhat, and changes can be made to the infirm dependent caregiver credit to allow parents to claim some money in respect of respite.

So a number of measures can be taken, both in the long term with respect to building a comprehensive, inclusive system, and in the short term for helping parents and children immediately with access to an inclusive early childhood development program.

Thank you very much.

The Co-Chair (Ms. Carolyn Bennett): Thank you, Sherri.

Next is Connie Laurin-Bowie, the director of policy and programs for the Canadian Association for Community Living. A lot of you may know it was founded in 1958 by parents of children with intellectual disabilities to help them promote their active participation in all aspects of community life. It's now one of the ten largest charitable organizations in the country. That reminds us how big the issue we're dealing with this afternoon actually is.

Ms. Connie Laurin-Bowie (Director, Policy and Programs, Canadian Association for Community Living): Thank you for that nice introduction.

I would like to speak this afternoon a little bit about exactly that point: the issue of hearing the voices of families.

Our response to the initial national children's agenda I think was well heard. Essentially we brought forward what the national children's agenda, at least at that point, in draft form, looked like. The response we had from families was, “This is really excluding our children.” So we began to make the case that not only were children with disabilities not named, identified, or mentioned in the strategy, but when they were, it was in the form of: how do you actually prevent a child from being born with a disability? It was not in the more generic sense of how you actually develop a children's agenda that would be inclusive of all kids, and those with a disability in particular.

Once we made our point and had a few people unhappy with us about what exactly we meant when we said they were excluded, we realized we had some homework to do in terms of actually going back and talking to families and to parents and saying “What are the real issues and what would an inclusive agenda look like for your families and for your children?”

Dawn and Sherri have both spoken about the issue of respite. We went across the country. We didn't go to every province and territory, but we're still continuing to meet with families in different parts of the country. We had a fairly good sampling from different regions, and we had a round-table discussion with families about what their lives look like today—not, “What do you think the policy implications are for your kid or for your family?” but “What does your life look like?”

And we didn't restrict our discussions to Canadian Association for Community Living affiliates. We had a fairly open dialogue with families from different groups. I think Ms. Lill was in attendance at the one in Halifax, for example.

What we heard from families was incredibly compelling. They started in every place by saying “What we want for our kids is exactly what every other parent wants for their kids. We want them to be safe, we want them to be loved and happy and accepted, we want our families to have an adequate income that they can support their children with, and we want a family life that's like everybody else's family life.” They want to function, and they don't want the disability a particular child has to define the child and in turn the family, and in turn their place in the community. They expressed those feelings very compellingly in a number of different ways and identified different things that stood in the way of getting there.

We developed... and this is not at all comprehensive; these are reflections on the process. They really expressed to us that while every family had a series of struggles in terms of either being in the labour market or meeting the needs of their kids and making their children's lives what they wanted them to be, what they dealt with that was very different from most other families was that they were the only ones taking full responsibility for the lives of their children.

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That meant that while most families could trust that an education system would be there for their kids, these families couldn't even trust that their children would be safe in a school and not be abused. They couldn't trust that a child care centre would have the kinds of supports available for their children. It wasn't that they wanted separate safe places for their children; they wanted people to share responsibility with, as other parents have the opportunity to do, so other systems available for kids would take on some of the onus they were bearing solely.

That responsibility took the form of financial issues that have been alluded to in terms of one of the policy implications. It was also around coordinating numerous kinds of systems, advocating within both the generic and the disability-specific systems, and coordinating that kind of support. Then I think they resoundingly identified the issue of respite.

As Sherri outlined, respite can mean a number of different things. If child care centres, for example, were more accessible to kids with disabilities and inclusive, what they call respite wouldn't necessarily be necessary. Yet there are still some very specific respite care needs in the homes that are disability-specific and required. Home care is the other sort of place you would look. There are some medical needs related to respite for some. For others, it is really family support kind of respite—just some time to breathe.

In going back to look at the policy implications of all of those messages, the most important thing for us is that it's not simply enough to state that the children's agenda will include kids with disabilities. It's our joint responsibility, we feel, to figure out what we mean when we say it's going to be inclusive of all kids, and what the implications of that will be in designing things like accountability mechanisms. So if we want to have systems that are effective for all kids, we need to design accountability mechanisms.

What does that mean in terms of measuring the success of children? We think we understand what we mean, but there is room for a real discussion about benchmarks for kids. There should be individual benchmarks on the improvement of individual children. Our feeling has been that early childhood educators have pretty good knowledge on how you do that. They are doing it in many child care centres across the country.

There is another policy mechanism, for example, on the parenting side. Parents who have children with disabilities need the same kind of support as other parents. I read recently, in a Down's syndrome society newsletter, an article about breastfeeding a child with Down's syndrome. It was really quite astounding to me that families who had children with Down's syndrome would not get access—and this was clear in the article—to the kind of support a new mom would get for breastfeeding a child without a disability. Yet the child with Down's syndrome would likely benefit more than many other children from that kind of nurturing from their mother.

So the range of implications is quite large. Today, because there is so much other expertise in different pieces, I don't want to go into a lot of detail on what we propose in terms of the policy objectives, but I would like to deliver two messages.

One is that whatever becomes possible through federal-provincial processes and this Parliament, have a lens for families that have children with disabilities within them. Also, have a process where we can work together to explore them, because clearly no one fully understands what the implications will be until we actually roll out where the investments will go.

The Co-Chair (Ms. Carolyn Bennett): Thank you.

Ms. Connie Laurin-Bowie: Can I add one quick thing?

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Both subcommittees on disabilities will know, because you helped launch the process for the 6th International Congress on the Inclusion of Children with Disabilities in the Community, that we are up and rolling. We're ready for the congress that will happen in October 2000 in Edmonton.

We would like at some point to have an opportunity to talk to both subcommittee. Invitations to both chairs will probably arrive on Monday. The question for you will be whether the two subcommittees would be interested in holding some kind of consultation or hearing in Edmonton during this event, so we would have an opportunity to have an international group of families and people from the various sponsoring agencies, which include PAHO, UNICEF and others, and how we might proceed to talk together about what that might look like.

The Chair (Ms. Carolyn Bennett): Thanks very much, Connie. That sounds very interesting. What is the date of that?

Ms. Connie Laurin-Bowie: The flyer is on the table in both languages. It's from October 22 to 24. For those of you who speak espagnol, we have it available in the office.

The Chair (Ms. Carolyn Bennett): Thanks very much.

Our last panellist this afternoon is Dr. Sharon Hope Irwin, who is the founder and director of the Town Day Care Centre in Glace Bay, Nova Scotia. She did such an amazing job of designing and having a totally inclusive facility and program that was clearly of value to all children, and we'll now get to hear about SpeciaLink, which is going to take this on the road.

Ms. Sharon Hope Irwin (Executive Director, SpeciaLink, National Centre for Child Care Inclusion): When I heard about your two subcommittees holding a joint meeting, I must say it won my heart. To this point, I had felt that the Sub-Committee on the Status of Persons with Disabilities had ignored children, and the Sub-Committee on Children and Youth at Risk had ignored disabilities.

Briefly, to elaborate on that, of course there was the seven-year national strategy for the integration of persons with disabilities, but that didn't say anything about kids at all. Now there's the In Unison agreement.

I had a chance to participate in the hearings on the current strategy, and frankly I felt quite isolated, since I seemed to be the only person back in 1995 addressing issues concerned with very young children with disabilities and their families. It seemed that attention was being focused on supports for employment of adults with disabilities on rehabilitation, and just possibly on transition to employment. It wasn't that I felt patronized or really left out by my listeners; it was just that the issues regarding very young children with disabilities and impacts on their families weren't even on the agenda at that time.

Just to prove that point, as I recently re-read one of the documents related to the development of the In Unison strategy, I was surprised and really pleased to find there was a statement in there about young kids. It wasn't perfect, I thought. It left out family economic well-being, but it did say the things we wanted said about being in there from the beginning, and being in child care programs with everybody else.

I wondered who else had testified about young children with disabilities. So I went to the back of the book to find out who it was—and it was me. I laughed a little bit, but it brought me back to earth, realizing that the issue of very young children and their families had received little or no attention from the subcommittee at that time.

I can see that things are changing rapidly, but that's not to leave the Sub-Committee on Children and Youth at Risk off the hook. Nobody seemed to explain more clearly how these deliberations were distressing people in the disability communities, and the group of parents Connie referred to wrote the statement, “Don't exclude our children; include all of Canada's children in the national children's agenda”.

In 1998, when the school readiness discussions were held, I flew up to Ottawa from Cape Breton—I actually took two planes—with Paul Young, the former president of the self-advocate group, People First. Paul asked me where I was going. I told him I was going to speak in Ottawa to a committee concerned with school readiness. Paul then said “Sharon, you have to tell them that some of us will never be ready.” That's another message I really want to bring you.

While we focus on normative outcome measures and evaluation, and design policies and funding streams that give us the biggest bang for the buck—by the way, I think that came from Eisenhower's Secretary of Defence, Charlie Wilson, from General Motors—we have to think clearly about two things: first, that our ability to figure out what to measure and how to measure is in its infancy; and secondly, if we get involved in that kind of disability calculus, we're likely to miss some points about the inherent value of all our children as children, not just as potential wage earners.

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Let me give you a quick little story on that one. Our day care centre, to which Dr. Bennett so kindly referred, in Glace Bay had been including children with disabilities for a long time, and although we worked very hard to help other Cape Breton child care centres include kids with disabilities, we usually had a long waiting list for such spaces. When a space came up, we'd hold a committee meeting about who would get it. I was the director of the centre, and my policy was “next is first”, meaning the next child on the list gets in. But there were so many kids waiting for those spaces.

Anyway, we had a committee. We had an accountant and a school board member, along with me and the resource teacher, a group of therapists, and a lot of parents. The accountant had another idea. He asked, what child would benefit most from this integrated placement?

Several people answered. The school board member said, you've told us that kids who spend three years in your program usually go into less intensive school placements. The kids who would have gone into TMH classes—that's what they called those classes then—usually go into the next level up, which they call the MH classes, and the kids who would usually have gone into the EMH classes usually go in the auxiliary classes, and the kids who would have gone into the auxiliary classes often go into the regular classes. That saves the school board money and brings the kids closer to the mainstream, which is what you say you care about. Which of the kids on this waiting list fit this picture?

The various therapists spoke about different children and how much input of their therapies would make a difference in terms of the kids getting ready for less intensive, less specialized, less costly placements in school.

I knew where I stood. If a decision was made based on anticipated outcome rather than “next is first”, I'd quit. But we're a democratic group, and discussion triumphed. I didn't have to threaten to quit, and sense prevailed.

So Sonia was accepted. Sonia was multiply handicapped, one of those profoundly involved kids of whom they say, “Does she really know she's there?” or “Does she have any consciousness of her surroundings?”

Sonia's parents weren't looking for miracles from us. They didn't expect us even to learn how to tube-feed or to do most of the physiotherapy exercises that kept her from developing scoliosis and further spasticity. As her dad said, we just want to feel that for the mornings, Sonia is a child among other children, with their games and their laughter and their songs. And so that's where she was.

Years later, her father talked about that time. He said, “There was real crisis in our family when we asked you take Sonia. We'd reached a point where we were going to have to institutionalize her. There was just never any break for us. Her time in child care gave us a break, gave us a breather, gave us respite, gave us strength. When she left your centre, she went to school... and so we were able to keep her with us.” Sonia died when she was 16, at home.

I would like to go back to that accountant. If I couldn't persuade him that “next is first”, that children have rights as children, not just for their potential wage-earning capacity versus their financial cost to society, I could show him in dollars and cents what we saved the province because Sonia wasn't institutionalized for the rest of her life, and that wouldn't even begin to get into quality of life issues.

I tell you this story because I want you to look at children with disabilities as kids first, and then to look at what other supports they need to participate equally in our society. I also want you to think about those young children within the context of their families, where lack of services such as child care and sensitive employment policies all too often make it impossible for their parents to remain employed. In a society where almost all parents need employment income to provide adequately for their families, parents of children with disabilities often end up in a special welfare ghetto, labelled “parents of kids with disabilities”.

Back in 1993 when the social security reform hearings were held, many parents of children with disabilities spoke before the travelling committee. In fact, the first speaker in Whitehorse and the last speaker in St. John's were both parents of children with disabilities. They spoke about the extreme fragility of their child care arrangements and how they were often just one illness away from welfare.

The committee's recommendation did include one about children with disabilities:

that a further portion of federal child care financing be allocated for the needs of children with disabilities, so that they may take advantage of opportunities for full participation in the community.

But as you know, the debt and deficit crisis of 1995 effectively ended any progressive social reform of this type for the next several years, until now.

• 1620

Since that time, there has been a growing awareness of the link between unemployment and parenting a child with a disability and a recognition that community-based child care, disability-sensitive employment policies, extended parental/maternity leave could mitigate some of the problems of disability-induced parental unemployment.

For the past four years, Donna Lero at the University of Guelph and I have been following a group of over 350 postal worker families that include a child with a disability, both to administer a support and consultation program and also to track the benefits of various individualized funding choices that they make.

Although we thought we were studying employed parents, the survivors in this game of balancing work with parenting a child with a disability, we learned that many of the mothers in these families had been forced to leave their jobs or to downgrade substantially their workforce participation because of the lack of appropriate services for children, notably child care. These weren't the upper-income parents and families often portrayed in the media, where the mother chooses to stay at home. In these families, the loss of the second income and the additional uninsured costs of parenting a child with a disability or health impairment often means huge debts, isolation from community activities that require either fees or transportation, and tremendous stress on the whole family.

I talked to a number of these families on a regular basis, and one story that makes it jell for me was a discussion with one of those moms whose daughter has rheumatoid arthritis. She had worked in a bank before the birth of her child, but found that the variability in the child's level of pain every morning made it impossible for her to have a job, for her to go back to work. The little girl was now five years old, and the mother thought the funding from the postal worker project could provide her either with a respite worker so that she could go back to work in the mornings and not end up with a negative amount of money at the end of the day, or simply a chance to use a community swimming pool with her daughter, which, on the one income and without a second car, they couldn't afford.

I wanted to get the necessary forms from her right away, so I asked her if she could find a fax machine—which wasn't a nice thing to say to someone whose husband works for Canada Post, but it was a real hurry. She said, “I'll check with the girls at the bank; maybe there's a fax machine there now.”

I'm not sure I'm conveying to you how isolated this mom was, who, in the six years since she had been at the bank, had never made any real connections with anybody other than a doctor or health care provider. In her mind, the only possible source of a fax machine was “the girls at the bank” with whom she had worked six years earlier. It still makes me shiver a bit to recall her voice, and to know that her isolation and lack of resources are so common in such families.

Many of us look to the throne speech for the five areas of opportunity, really six, that were outlined there: one, the centres of excellence for children's well-being—they've been alluded to, and finally, we think, because of a lot of response from the disability community and parents, one of those centres of excellence will be for children and youth with disabilities, which was not the original plan—two, the enhanced national child benefit and the reinvestment fund; three, the national children's agenda; four, enhanced maternity and parental leave; and five, a more family-friendly environment in federally regulated workplaces. There were also discussions of the tax measures, which Sherri talked about and which Dr. Bennett summarized in a statement that the Canadian Association for Community Living used in one of their papers.

In all of these areas, in the national children's agenda, there seems to be a window that, if it were more sensitively designed, could address additional issues facing families with a child with a disability.

As a last item here, I want to talk for a moment about the enhanced EI maternity/parental leave plan that will take effect on January 1, 2001.

Issues surrounding the 55% payment rate and the high percentage of women who are not eligible have been raised by many groups. But what about the inflexibility of when leave is taken? What about parents whose children spend the first few months of their lives in intensive care units of hospitals? Surely that leave would be better saved for the time after the child leaves the hospital.

Other parents, especially those whose children have chronic illnesses, have asked about a children's illness benefit being built into the enhanced EI plan. Other countries have done something similar. If, as it is said, children are being released from hospital quicker and sicker, we need a societal response to this problem. Coming from Cape Breton, I am well aware that our local employers will not be able to afford a sick child benefit for their employees, and I'm sure this is the case with many small and medium-sized employers everywhere.

• 1625

I welcome this opportunity. Thank you again. I am eager to address any questions.

The Co-Chair (Ms. Carolyn Bennett): Thank you all very much.

In welcoming back Dawn Walker, I think I neglected... If people don't know her organization, the Canadian Institute of Child Health, it has been amazing. It's seriously dedicated to the health and well-being of children in Canada and it has done amazing advocacy and public awareness. The monitoring you see in that document is just a small example of what they're up to: healthy pregnancy and childbirth and healthy child development and a healthy and safe environment.

We learned a great deal from Dawn's presentation to the children at risk committee last year. We were very impressed then that disability was one of the things they raised, as well as the environment.

I thank you again for coming and I apologize.

Do the officials have anything to add now or do you want to go to the questions?

Ms. Marta Morgan (Director, Children's Policy, Department of Human Resources Development Canada): There are just a couple of issues that I wouldn't mind picking up on that have been mentioned by the presenters.

On the national children's agenda, as many of you who have been involved in it know, we are expecting that ministerial counsel will soon release the response to the national children's agenda dialogue documents that were released about a year ago now and to the public input that was received. As a couple of people have mentioned, the concerns of the disability community were heard loudly in that process. We're hopeful that the document that's released, the report on what was heard, will reflect that input. The revised vision that will be released will also reflect that input. So we look forward to hearing from you about your response to it.

On the issue of outcome measurement, I think governments are increasingly trying to focus on outcomes and find ways to demonstrate the effectiveness of their policies and programs. We do recognize that we're in the early days of this kind of work and that we're trying to develop measures that are meaningful and inclusive. We need to work with the various communities to make sure that the way we measure and what we measure lead us in the right direction for all kids.

The other issue that Sherri Torjman was talking about is the issue of early child development. As many know, there was a commitment in the Speech from the Throne last fall for the federal government to work with provinces and territories on early child development. Clearly this is an area where most of the services at the community level are delivered by provinces and territories. The input from the disability community on the national children's agenda and some of the thinking that's been done by Caledon in terms of an agenda for children with disabilities should provide useful input into the work that's going on among officials on those issues.

The Co-Chair (Mr. John Godfrey): David, did you have anything you wanted to add from a Health Canada perspective?

Mr. David Fransen (Director General, Population Health Directorate, Health Promotion and Programs Branch, Department of Health Canada): As so often is the case, there is very little to add after Marta speaks. At least this is my experience.

We find ourselves, HRDC and Health Canada, involved in a lot of work on the children's agenda and on the ECD front. Marta has kind of touched on the highlights in terms of what needs to be said in response.

I welcome the opportunity to be here. There's no question that the theme is something that is important to us as we move forward on the ECD discussions. I think we should just get to the discussion.

• 1630

[Translation]

The Co-Chair (Mr. John Godfrey): As of now, we have only three names on our list, Mr. Crête, Mr. McCormick and myself.

Mr. Crête.

Mr. Paul Crête (Kamouraska—Rivière-du-Loup—Témiscouata—Les Basques, BQ): I would first of all like to say that I am quite surprised. Two or three times in the course of your presentations I found myself wondering whether I was not in a provincial legislature or whether we were not trying to do something that lies within the jurisdiction of the provinces. A lot has been said here about school, about early childhood and about a host of other things that are under provincial jurisdiction. I understand your wish to take advantage of any available forum and I understand the issue that you are addressing. I want to be able to discuss it with you but I also wanted to say right off that I was quite surprised because it seems obvious to me that most of these issues do not lie within federal jurisdiction, except for tax measures. That seems very clear to me.

There are two other things I wish to say, however. I would ask Ms. Sharon Hope Irwin to take a look at the respite program that the government of Quebec has just announced. Rather than have, from one coast of Canada to the other, a single program under which a person would get 55% of her salary during maternity leave, we would offer 70% of her salary for a period of 40 weeks. We've made the necessary adjustments and can be much more flexible than what is contained in the federal government's offer.

The issue that I am personally most interested in, and that I would like to discuss with you, is that of respite programs. I am particularly interested in respite care because of the situation in my own riding. We have a center called l'Auberge la clé des champs, which offers respite care to parents of people with disabilities and to young people with disabilities. They can spend their holidays in this well-equipped facility. But that is not where the problem lies. The problem is more like the situation we had before Quebec set up low-cost child care centers. Many parents would like their children or themselves to be able to benefit from such a service whenever respite is necessary. This service is available but it costs too much and the facility I spoke of cannot afford to reduce the cost. Several of the witnesses have spoken about this and I wonder whether you could elaborate on the solutions that seem appropriate to you. The idea is not to set up more respite care centers but, rather, to find the funding that will allow this service to be made available. How do you think we should go about this?

[English]

The Co-Chair (Mr. John Godfrey): Sharon, did you want to comment?

Ms. Sharon Hope Irwin: Sure. I always would like to take a minute on this one. Then I'll turn it over to the respite experts.

Let me go quickly to the early development and care issue or, as some people call it, early childhood services that are employment-sensitive. Some others call it child care plus. I'd throw into that, even though it's definitely provincial jurisdiction, education systems.

Even though teachers might not want to think this, a lot of people see the fact that their kid is in school as being an employment support for them. Not only are they learning what they're supposed to be learning in school, but they are also being assured, hopefully, a healthy and safe environment while their parents are at work.

An early childhood care and development system would take care of a lot of what often ends up being classified as respite needs because parents aren't able to access child care or child development programs during a good part of the day. To some extent, it narrows the range of respite care that has to be taken over by some other system if an early childhood development and care system is in place and education is as accessible as it ought to be to kids with disabilities. That doesn't mean that the rest needn't be there, but it certainly narrows the costs and narrows the need for a stand-alone respite system.

Let me give that to somebody else.

• 1635

Ms. Sherri Torjman: I agree with what Sharon has just said. Over and above that, there always will be a need for a system of respite services. And I think there are two policy directions in this regard. In response to your question on what do we do, one is an investment in the actual respite services, and they may look very different.

There are different kinds of respite services required for short-term care or for long-term care like vacations, for example. There has to be an investment in this service, in the supply, just as we're talking about an investment in the supply of early childhood development, which includes child care and family resource centres. That equally is an important place for an investment.

Over and above that, there likely will be costs for parents, because most of these services are based on some form of parental fees. And that's where I think the tax system can be of assistance. Provinces can choose to provide additional assistance to those parents through grants, or there could be some addition to the medical expense tax credit, for example, if we want to use the existing provisions. And the problem with the current federal provisions is that they are very medically oriented, they are very institutionally oriented, and any form of natural care like respite care, for example, does not easily qualify under the medical expense tax credit.

So that's one area where there could be some direct movement in terms of offsetting costs. There have also been suggestions for an additional disability credit that would include a lot of the components, including respite care. That might be a longer-term initiative.

In response to your question about the policy directions, I really think we need to invest in the supply and then also offset the additional costs, because there likely will be additional costs with that kind of service.

The Co-Chair (Ms. Carolyn Bennett): Ms. Walker.

Ms. Dawn Walker: Something that could be very helpful would be if this committee encouraged linkages with the home care and long-term care discussion that is going on through FPT committees and with the federal government.

I'm the only one on the steering committee of the home care sector study right now with experience with children, and it was difficult to maintain that position. About 98.9% of the discussion is focused on the senior population. And, yes, the senior population certainly has a need. Children are always tacked onto the end of home care, community care, long-term care planning. And so children really need to be integrated within all services and plans being developed. A concrete recommendation for this committee is that the discussions going on at that level of home care and long-term care incorporate the needs of children.

The Co-Chair (Ms. Carolyn Bennett): Dave, can you help us a little from the Health Canada perspective in terms of home care, or is this a—

Ms. Dawn Walker: Could I make one more point on that? The sector study is also run out of HRDC, but Dave may be able to refer to that. The second issue, though, was the international obligations that Canada has made in terms of the UN Convention on the Rights of the Child, which has article 23. It is very specific, through a number of subarticles, about the rights of children of disabilities within the state. So I do feel that the federal government does have a sound role through its international obligations, as articulated in the Convention on the Rights of the Child.

The Co-Chair (Ms. Carolyn Bennett): Also, I think from Monsieur Crête, who wasn't on our subcommittee during the testimony of Madame Falardeau-Ramsay... that actually more than half of the complaints to the Human Rights Commission are about persons with disabilities. So I think we do see this as a human rights issue and we need to be moving forward on it.

Is there some comment on where the home care piece comes over? I understand in some places parents are able to take incubators home. There are lots of places we could be going. How far along that road are we?

• 1640

Mr. David Fransen: I can't tell you with a great deal of knowledge about precisely what's going on in the home care discussions. To my understanding, from where I sit in the population health directorate, with responsibility on the one hand for seniors and on the other hand for children, something we're very mindful of is the need to see the linkages and to have the people who are responsible for home care see that there's a need for the caregivers who are caught between both directions to have those linkages understood and worked on. We've been talking with the home care people who are responsible for the ongoing negotiations.

That's as much as I would be able to say at this point.

The Co-Chair (Ms. Carolyn Bennett): Thank you.

The Co-Chair (Mr. John Godfrey): Larry McCormick.

Mr. Larry McCormick (Hastings—Frontenac—Lennox and Addington, Lib.): I want to thank our panel of expert witnesses for being here. You're always doing so much great work, such as this sixth annual international congress.

You've been very kind today. I've been sitting around this table of HRD for six and a half years, so when I hear some of you outside the door, I do accept your frustrations and applaud your patience, because it's been great.

As we look at this congress that's coming up on the inclusion of children with disabilities in the community, under the umbrella of the excellent work of this subcommittee—and I applaud the chairs—on early child development, where should this come together with the prevention of disabilities? I'm thinking about low birth rates or fetal alcohol syndrome. Should there be a partnership there? Should they be separate? How can we bounce and juggle this together, Mr. Chair?

Ms. Connie Laurin-Bowie: An excellent question. We've really forced ourselves more recently to try to hit that question head on. In the past our position and the position that families have taken has been to forget prevention. That approach to disability is focused on a biomedical model. We've been forced more recently to have an internal debate about what we mean when we say move away from prevention.

What's been really helpful for us, actually, is the international discussions in this regard. Many international agencies, where they have a disability strategy, are focused on prevention. So we've taken a closer look at what that actually means.

I'll leave you this. Unfortunately, I apologize to the members, I don't have this in French, which is why I didn't leave it with the committee. We are translating it, so it shall be available.

We realize that instead of disregarding the need for some prevention strategies, what we really mean is that you need to shift some of the investment strategies towards inclusion and the perspectives of inclusion that are focused on generic systems. I'll use the education example, and I apologize for using a provincial jurisdiction as an example, but it's always a clearer way of talking about kids when you think about education.

If your focus in disability is on prevention, then you really take the onus off school systems and educators to create inclusive environments. Then the corresponding result is that you provide accommodation in a classroom. An inclusive classroom, as opposed to a classroom that accommodates, is a classroom where you look at the needs of the children in the class and you say, this little boy didn't get to eat breakfast this morning; this little girl has complex medical needs and a series of disability and communication needs; this child gets beaten up and he can't do his homework at night. You think differently about what the classroom looks like.

I use the education example simply as a metaphor because I think in terms of how we support kids in communities we have to have exactly the same approach. It's a roundabout way of saying the issue is really not to have any prevention strategies. We would never propose that you don't prevent accidents. We understand the need to focus, for example, on fetal alcohol syndrome and women's health. We don't therefore think that we shouldn't also be investing in strategies for families who have a child with fetal alcohol syndrome to address the needs of the family and respite and all of those issues. So really it's a question of investment and shifting to a more balanced approach.

• 1645

Ms. Sherri Torjman: I would just like to add that the notion or the framework for an early childhood development system in our view really includes prenatal and perinatal services, so those would be a comprehensive or an integrated part of a comprehensive system.

The federal government actually has several major investments in this area already through Health Canada, but we think it should really be expanded as part of this broader comprehensive system we're addressing. So thank you for raising that.

The Co-Chair (Mr. John Godfrey): Sharon.

Ms. Sharon Hope Irwin: I wanted to elaborate just for a second on Connie's classroom and just mention that along with the three or four children whom she talked about, there were another 16 or 20 who did have breakfast, who do not have a disability, and who help normalize the environment, or who just get a good early childhood service or education because they too are part of that program.

When we try to gate-keep and have a classroom that only has those kids at high risk, we really lose a lot of the natural balance and natural learning and natural socialization that is part of successful education and part of successful early child development services.

The Co-Chair (Mr. John Godfrey): Larry had a quick comment.

Mr. Larry McCormick: Yes, just a comment, Mr. Chair, before I pass it on.

I'm sure, witnesses, your work on the goals and on the action of the inclusion of the children with disabilities in our communities will benefit all involved and strengthen all of our communities.

Thank you.

The Co-Chair (Mr. John Godfrey): David.

Mr. David Fransen: If I could add one thing too, there is a temptation frequently in this... There is a limited amount of resources available everywhere. Everyone needs to make choices, and so there is the inevitable movement toward priority-setting. So you set up—is it a low birth rate issue, is it an FAS, and can we decide among all of these various problem areas that need to be addressed?

I think it was Connie who made the point that there is no system for parents with children with special needs. When you talk to them and ask them what they need, one of the things they ask for, in addition to financial assistance, in addition to respite, is coordination. Can someone help us coordinate all of the variety of services that are out there? I think this is a point we too often lose sight of.

There are some really interesting examples out there across the country of jurisdictions that have identified this need, that there is a variety of services that can be brought to bear on a particular problem or a particular family. No one service suffices in and of itself, and very often it's the parent or the family that's left to its own devices to find them.

I think one of the things municipalities and provinces can do to help this is to facilitate coordination of services.

I visited Saskatchewan a few weeks ago. They have put in place a model there at the provincial level, something called regional intersectoral committees. They are funding and facilitating bodies across the province that bring together all of the different services in a municipality. People sit around a table, do the brainstorming around needs, and you have a synergy and a leverage factor going on there that goes way beyond the limited investment of the province in that facility.

I just mention it here because what it points to is a way to get much more bang for the very limited amount of bucks that go to any one specific program and help in the end, I think, the people who are without devices to do that kind of coordination themselves.

The Co-Chair (Mr. John Godfrey): You've really started something here, McCormick.

I'm recognizing Dawn and then Connie.

Ms. Dawn Walker: I think we have to be really careful that the coordination of services is a bigger bang for the buck as opposed to a smaller pop from the instrument, because in the interviews we did with the Convention on the Rights of the Child when we brought together experts from across the country to look at what's really happening across the country, there was a concern on this issue of coordination at a government level.

• 1650

Often that coordination at the government level results in fewer services for the individual family. Coordination as a service or as a support at arm's length from the funder is a much preferred way rather than coordination through the funder. There is story after story after story of how, in the guise of coordination—I see everybody here nodding who's working with these families—the actual services that support families have often been reduced. It's a plea that parents make, in doing the convention in particular, that the concept of coordination and assistance in coordination in case management is a terrific idea, without a doubt. The confusion is something that parents often have to take. In order to manage their child's care, they cannot work. But the reality of what's happened recently across the country is that in the guise of coordination, services have actually been reduced.

I'd like to make another point. I wish I could find another word for this, because these are not services. We have to flip our jargon. Children with special needs have rights. These are human rights. The convention says it very clearly; a number of us worked on this. Supports to families with children with special needs, or the care and treatment in the way we integrate and work with children with disabilities, should not be an add-on to an affluent society during a time of privilege. It's a right. It's a basic human right for children to be children and to be able to participate with their disability to the best of their abilities.

That's one of the themes that come out in the convention over and over again. We have to flip our jargon in terms of its being a human rights issue and not a privilege or an add-on of an affluent society.

The Co-Chair (Mr. John Godfrey): We'll have a last short comment from Connie.

Ms. Connie Laurin-Bowie: I have two points on this question that I think are both building on Don's point. We've done a little bit of work with families who have children with complex medical needs, and there's a perfect example of where they're trying to coordinate lots of services and supports. Two issues really come out.

One is the amount of time they use in planning. One of the difficulties we've had in a lot of pilot projects in trying to find ways to support that planning process is that it's difficult to find a place where you could have independence in the planning process, so the planning process is not owned by the service provider and the professionals in the process. Then it becomes dictating what you need because what we've got to give you is this; this is what you need because this is what we're selling. Everything's building on Dawn's point on that one. We've not actually resolved the question of how you establish independent places for planning supports, and planning supports that are accountable to families.

The second thing, which is quite intricately related, and it speaks to Dawn's point about rights, is that families have actually expressed that in many of their experiences, the service systems they have access to that are disability-specific or medically specific overtake their lives. So instead of saying their child happens to need this particular medical support, they can only get that medical support if their child stays home from school.

So what ends up happening is the services kind of descend on the family and the family becomes defined by where they can get that service, which in many cases is a life service. They need it to live. Then the school system and the social service system and everything else kind of collapse around them, and what disappear are the natural supports in the community.

The title of our conference, The Inclusion of Children with Disabilities in the Community, is purposeful. We're just hosting the congress in Canada, as many of you know. Its former title was Serving Children with Disabilities in the Community. It speaks directly to this issue: that in fact what we need to do is find ways so that services do not control and define what a family looks like, but exist for the purposes of the disability and the family's needs in a context where a family can still be members and contributing parts of the community. There's a lot of natural support that we actually prevent from happening because of the way we deliver services.

• 1655

The Co-Chair (Mr. John Godfrey): Thank you very much.

I'm mindful of the fact that there are six folks, including myself, who have things to ask, that there are many people who have things to say, and that we have a vote at 5:30, I think.

Is that right?

I think what we'll have to do, starting with myself, is exert some self-discipline.

Simply one observation, which I make sort of on the fly to my co-chair, with, I hope, the approval of the researchers and clerks, is something Sharon said, which would be very helpful. I think we should have a future joint meeting in which we systematically go through the seven points—I think there are seven—in the Speech from the Throne about the national children's agenda, with the double perspective of kids at risk or the triple perspective of kids with disabilities and families with needs.

In every case these are very useful examples: an inflexible leave system that doesn't take into account the reality of when they need the leave, workplace-friendly policies that might have a special connotation for families with children with disabilities, and so on. If we could go through that on a more systematic basis as a joint committee activity when we come back, I think that would be useful.

The Co-Chair (Ms. Carolyn Bennett): Or even if they would... They may have already done the work.

The Co-Chair (Mr. John Godfrey): You may have also looked at it jointly or severally. We just think that's probably a useful way of being more systematic about this.

But my question was this. One of those seven elements is the possibility of this national action plan for early childhood development services at the community level, in accord with the provinces, by December 2000. It is a possibility that three of the potential building blocks might be prenatal and perinatal services, parenting resources, and child care and early education, right?

Now, what's interesting is if you look at each of those units. In a sense, prenatal does address some of the prevention agenda, if you like. But starting right away, like the example that was given of the parent who's trying to breastfeed a Down's syndrome child, we are suddenly seeing that if you apply that disability lens to seek out and be useful to those families, I could also see that respite care could come under parenting resources.

Obviously making the day cares and child care places more accessible is another way of coming at it, but I guess I'm trying to think: if we're going to sign a deal with the provinces on all this stuff, what is the neatest way of expressing it? Is it simply an outcome measure that has to applied to the services? Do you have to get into micromanaging in every service? I'm looking just for some notions.

Sherri, do you have something?

Ms. Sherri Torjman: It's an excellent question.

My view would be that it's something right at the beginning, that it's a fundamental principle that applies across the board. I would have that right up front, as a key area that you would want to address, not simply as an outcome and maybe not even as an outcome—I would have to think about that—but definitely as an organizing principle around whatever system you hope to develop.

The Co-Chair (Mr. John Godfrey): Ironically, in some ways we're trying to move the discussion away from simply children at risk and poor kids, so we're using the language, which is “all kids”, right? But now “all kids” has to be understood more richly to specifically include the disability community.

I don't know if anyone else has a thought or comment before we move on to the next item.

Connie, then Dawn.

Ms. Connie Laurin-Bowie: You should never ask us if we want to talk.

Voices: Oh, oh!

Ms. Connie Laurin-Bowie: Really quickly on this, we'd had this discussion because at such a broad level the issue of including kids with a disability is hard to apply.

So what does it mean? It does not mean... I think Sherri's right. You need a statement right at the outset about what you mean by inclusion of children with a disability, not just including children with a disability, not how we want a separate parenting centre for the issues relating to parenting a child with a disability. If you're doing parenting centres, we want to make sure they're accessible to families who have a child with a disability.

The Co-Chair (Mr. John Godfrey): Dawn, do you have a quickie or shall we move on to the next one?

• 1700

Ms. Dawn Walker: I have a really quick story. It may actually reflect a little bit about the earlier discussion about provincial jurisdictions.

A number of years ago, as many of you know, I was at Health Canada. I raised the question a number of times about what we were we doing about children with disabilities. At that time, children with disabilities were thought of in terms of care and treatment, so that, yes, it was a provincial responsibility. There was no particular focal point within Health Canada about children with disabilities for quite a number of years.

It's as we've evolved our way of thinking: that children with disabilities have a normal life, which includes population health. All of a sudden we began to include children in the normal discussion about children. That is certainly what I have seen evolve, even in terms of the departmental participation. But it certainly is something that I've seen happen over the years: the movement from care and treatment into inclusion.

A voice: Citizenship.

Ms. Dawn Walker: Yes, citizenship.

The Co-Chair (Mr. John Godfrey): Mr. Pagtakhan.

Mr. Rey D. Pagtakhan (Winnipeg North—St. Paul, Lib.): May I comment, Mr. Chair?

The Co-Chair (Mr. John Godfrey): You may comment briefly, and then we're moving to Madam St-Jacques.

Mr. Rey Pagtakhan: You asked, Mr. Chair, about measurable outcomes. It was also mentioned by one of you, by Ms. Torjman, I think.

As for the focus here, I think, we know it's about “early” and it's about “children”, but the critical point of measurable outcomes, the piece that we are being challenged on, is about development. But immediately you have two categories of children: those with disabilities and those without. Among those with disabilities, you have varying categories of severity.

I think it would be a challenge to the community, to you, the experts, to tell us, since the Prime Minister has spoken about measurable outcomes, whether the Prime Minister is indeed realistic in having this as an achievable. If not, tell us, so that we can tell him, and if it is achievable, challenge us to a systematic approach of dividing the challenge before us, which is about development.

Quickly, my background is pediatrics. You have the normal child growth and development, and then you have children also with growth and development but with disabilities. Therefore these stages of development, the levels that you can measure, will be different at every age level because of disabilities. But if you do not provide services to these people, they can be even further so-called handicapped—if I can use that word—because they have the handicaps to begin with. So we have a measurable outcome, if we can talk to the people with child developmental specialists, in one instance. I would like us to see if we can address this challenge.

The last point, Mr. Chair, is this. It is interesting that Ms. Walker alluded to how this is a human rights issue.

I think you should be forthright with us. At one time the issue of people with disabilities was in the Standing Committee on Human Rights. Now it is in the Standing Committee on Human Resources Development. Today I heard from the health officer that... who is coordinating? Tell us. Is the government approach, the federal approach, right? Is it with Human Resources? Is it with Health Canada? Who, in your vision, ought to coordinate this issue for the people with disabilities, even as we look at the issue, in this instance, of children with disabilities with early childhood development? Otherwise I will feel frustrated. As I was listening, I had six questions, Mr. Chairman, and I will not ask one—

The Co-Chair (Mr. John Godfrey): That was a remarkably interesting short intervention, which has raised quite a lively agenda for folks. Why don't we just divide it into two, one on the measurement issue and the second on what we'll call Dr. Pagtakhan's responsibility issue, if you like?

Who would like to go on measurement?

Ms. Connie Laurin-Bowie: May I? We probably all want to speak on this one, but I'll try to say this as succinctly as possible.

The issue of measurement is about what we want to achieve for kids. I fundamentally disagree that what we should measure is a child's future capacity to work or to have an economic existence.

What we believe as a movement of families is that what we should have is contributing members of society in a whole series of different ways and roles, with different aptitudes, in different capacities, and in different ways. The only way to design a measurement of whether you're doing that effectively for kids is to find... I think the early childhood educators know how to do this. They're doing it. What they measure in a child care environment is not whether this child needs a certain milestone. What they measure is whether they, as a child care environment, have met the needs of a child. So the measurement flips back onto the system and not onto the child.

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I think that's not an easy debate for a lot of people to have. Fundamentally what we've done is said that we want to invest in kids so that they'll be better producers. It's really a fundamental question.

The Co-Chair (Mr. John Godfrey): Are there any other short comments on measurement?

Ms. Sherri Torjman: I have just a short comment. We have expressed our concern about the outcomes-based measurement that is pervading government and just the general climate of society and how it is skewing much of what we're doing.

We wrote a paper called Are Outcomes the Best Outcome. I think there is some value in terms of measurement, but we have to be very careful. We have to look at the other kinds of things that are going on, the other possible successes, and be far more intelligent with respect to how we're dealing with this measurement question.

Mr. Rey Pagtakhan: Mr. Chair, may I make one very short suggestion?

I was listening intently and I agree with you. Precisely, we can agree that there ought to be measurable outcomes. Where we may disagree is in the definition of measurable outcomes.

I will suggest, listening to you—and I agree, and this is my belief—that with measurable outcomes in terms of wage earners... These are normal children and they ought to be productive adults in the future. But there are measurable outcomes, and this is what the value of Canada is about. That is the quality of life, not necessarily independent of wage earners. If we agree that these are two measurable outcomes, then we can challenge the policy-makers—us—about the second aspect, which is the more difficult aspect. That does not mean that we should shrink from that responsibility.

I agree with all of you that we cannot put the two groups of children in one basket. It's impossible, it is unkind, it is not fair, and it's not right.

The Co-Chair (Mr. John Godfrey): Yes.

Dawn, do you have a quick comment, either a final comment on that or on the responsibility issue?

Ms. Dawn Walker: I just want to comment on the data issue. It's something that's being grappled with around the world. I think there have been some lessons learned in the development of the questions in data collection of health, particularly for children. But I think some of those lessons learned... The committee may want to... I'm not sure whether you've talked to the people who have been developing health from the perspective of one of the lessons learned from the children's perspective.

Now that we're up against shortening the survey, there is a concern that the quality of life questions, the indicators that would tell us about families' feelings of whether their children are included or not, may not be seen as the priority question. That's where there are some lessons to be learned in the discussion before we go out with the national survey.

Ms. Sharon Hope Irwin: Can I have a minute?

The Co-Chair (Mr. John Godfrey): Yes, go ahead.

Ms. Sharon Hope Irwin: I just wanted to go back to readiness for a second, that key and crucial measurement at the start of school. I again draw your attention back to my friend Paul on the airplane, saying that some of us aren't going to be able to do that, regardless of what you do.

That's where the question is. Do we toss the Paul Youngs out and say they can't be ready for school and there's not much we can do in the early years? This isn't really true. That's obviously why the early childhood educators you were talking about and a lot of special education people have developed individual program plans where we have individualized goals for people who aren't going to meet the normatively designed criteria but certainly can progress along their own life charts and performances.

Sonia was another one. I talked about the fact that there was nothing in terms of measurable change in Sonia that justified using a high-quality early childhood program. There were kids who could have done better on readiness criteria had we included them. We need to tread carefully. We're cautioned by the fact that there was an enormous outcome there, but it was measured in terms of that whole family functioning and then ultimately in that other number-counting way, of the fact that Sonia was able to remain at home. In our zeal and zest for finding measurements we can all agree on, those things are often left out of the picture.

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Ms. Connie Laurin-Bowie: I feel I need to clarify that I'm actually saying something slightly different from what I'm hearing other people say. I'm not suggesting that we need to set up a separate set of outcome measures for kids with disabilities. What I'm suggesting is that we need to re-evaluate the measures we're creating for all kids.

I don't know if that's clear, because where you go with it in terms of policy implications is, okay, we have this great set of outcome measures for kids and we know we need to address those kids who don't fit into those developmental milestones, so we're going to create a different set of standards for what their developmental milestones are. That's not what we're saying. What we're actually proposing—I think I'm saying “we” in fairness—is that you need to re-evaluate what measures you're measuring kids by, and whether you even should be measuring kids. Maybe you should be measuring systems.

The Co-Chair (Mr. John Godfrey): I have a feeling this could be a debate.

Ms. Connie Laurin-Bowie: It's a big debate.

[Translation]

The Co-Chair (Mr. John Godfrey): Ms. St-Jacques.

Ms. Diane St-Jacques (Shefford, PC): I will try to be very brief because I know that some of the other members also wish to ask questions and that we are running short of time. As you know, often, in order to further a cause, you have to get public opinion behind you. You can sense that the population does not have enough information concerning mental disabilities. This is obvious in Quebec today. When you broach the subject of autism, people think that you were speaking of some sort of ear infection, a totally unrelated condition. People are afraid; they are afraid to talk about it when it happens in their family and that too is a factor of isolation. People are even afraid to come into contact with adults or children with a mental disability. People think it is some sort of contagious disease. I wonder about what is presently being done to make the population more aware of this and in particular about what the government might be doing in this regard.

As you know, there have been awareness campaigns concerning AIDS, a disease that was formerly a source of ostracism, but about which people are much more open today. The disease is still not widely accepted but people seem to be willing to help and to further the cause. I do not believe we are seeing any of this with mental illness. Perhaps I am not sufficiently informed. We have not seen many awareness campaigns about mental illness. What could be done to improve this situation?

[English]

Ms. Dawn Walker: This one is near and dear to my heart.

I happen to have one of the new Maclean's magazines in my briefcase. I spent the morning with the Canadian Chemical Producers. I'll leave this one with you. It is beginning to question the increasing rates of learning disabilities, attention deficit disorders, all kinds of neuro-behaviourial problems, as well as mental illness in children. A number of you have heard me talk on the environmental file of the fourfold increase in asthma, the 1% per year in childhood cancers, etc.

The institute, along with a number of other organizations, has called upon government for a commission on children's environmental health protection. It was a unanimous recommendation made by the Senate, and a number of you have been involved with that.

Children's environmental health has to come into this somehow. It needs to be linked, because there is a growing body of knowledge and evidence that what's happening with children in terms of the indicators, as you have mentioned, is that they are affected by the environment, multiple chemical exposures. We will continue working on that with colleagues at Health Canada, Environment Canada, and around the world, trying to look at the new indicators of children's health. They are environmental, right into birth defects. When you come full circle, with a number of children with disabilities, you start looking at root causes in terms of environment.

Ms. Sherri Torjman: Can I answer very briefly? I think you asked about what governments can do to talk more about some of these issues.

This is just a very small example, but something that is going on right now is that the federal-provincial-territorial working group on disabilities is preparing a report to issue to the public. Part of that report will include a component on what they're calling exemplary practice or good practice in terms of community activity. It's starting to get at this notion of talking about the kinds of things we're doing and trying to do well, and getting stories of people who have succeeded or who have examples we should be learning from.

So it's something that government is doing, and I think it's a start. It's a very small start, but I think an important one in terms of encouraging dialogue and debate on these good practices.

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The Co-Chair (Ms. Carolyn Bennett): I'd just ask Deborah when we get to see that report.

Ms. Deborah Caron Tunis (Director, Social Policy Development, Department of Human Resources Development Canada): The current hope is that social service ministers will release that in the fall, at their fall meeting. Drafts are being prepared, and there's a meeting with community representatives and the FPT working group next week. Sherri won't be with us, but Anne Makhoul from Caledon and Gail Fawcett will be there to start to bring all these examples together. So we're hoping for the fall.

The Co-Chair (Ms. Carolyn Bennett): And stakeholders are included in the deliberations? How is that working?

Ms. Deborah Caron Tunis: Yes, there's a group of ten representatives of provincial and national organizations, so Charlie Macdonald, who was at your group last week, will be there for Nova Scotia, Rick Goodfellow from Alberta, as well as Laurie Beachell and Diane Richler.

The Co-Chair (Ms. Carolyn Bennett): Great.

Ms. Connie Laurin-Bowie: On the question of what governments can do, I'd make two important points.

Civil society is a huge vehicle for public awareness, and on the disability side, we're increasingly having difficulty. Our role is increasingly being seen as one of a delivery agent, and the kind of public awareness we were potentially able to do in the past is harder to support. We're in discussions about how to move that, so I don't want to overstate that point.

The other thing I wouldn't like to leave this meeting without mentioning is that Robert Latimer's case will go to the Supreme Court next week. Fundamentally, I think that's a case about people's devaluing of Tracy Latimer. It is somehow seen not as a murder trial, because she had a significant intellectual disability. That's fundamentally an issue of public awareness and devaluing of human life.

So what governments could do on that is not create a piece of legislation that would create a lower standard of murder for those who kill their children who have a disability.

The Co-Chair (Ms. Carolyn Bennett): Thanks very much.

We have three more members on the list, so I wonder if you would all take up your pens and we could let the members ask their questions or put their comments, and then you could respond to the ones you think appropriate in your closing remarks. Pretty soon we won't be able to hear anything, because the bells will start.

Wendy Lill.

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

It's very good to see you all. I must say I'm finding this a very difficult session. I'm finding it very emotional.

I agree completely with you around the issue of Tracy Latimer. This is the issue of Tracy Latimer. It's the issue of a young girl who was murdered. For whatever reason the father may have decided was his motivation, the fact is a young girl lost her life and it was not her choice. I feel very strongly about that.

Sharon, I'd like to say I look at the issue of young children with disabilities, and I have gone through life with a child with a disability, and I know the inclusion supports are desperately underfunded, and they are underfunded everywhere. We have to say that.

We have to say they've cut away the services at the day cares in Nova Scotia for children with hearing impairment, though I think they threw a bit back in. The schools are desperately underfunded, so the inclusion services are really so unsatisfying that nobody really understands what inclusion is, because it's not done well. In terms of nurses' training, nurses should be trained to teach or help a woman who has a Down's syndrome child to breast-feed. It's about training. It's about teachers being trained.

But I want to just raise something—and I know it's taking it a bit away from kids, but it's every parent's fear. As parents of children with disabilities, we have to look down the road. Right now, we have something going on in Ontario, and it's not far behind anywhere else. We have changes in the mental health legislation, the community treatment orders, which are basically drugging laws, which are going to allow for people—young people, mentally impaired young offenders or...

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We're talking about these young, sweet children, who are going to be given as much aid as possible at a young age, but who may face, at the age of 17 or 18, if we allow provincial governments to start privatizing mental health services, basically drugging laws that allow people to be sedated and put into facilities. I'm sorry, but this is what we're looking at in Ontario. How far behind will Nova Scotia be?

Isn't our train speeding towards a wall in terms of what's going to happen to children ten or fifteen years down the line? And what can we do about that? I hate to take it away from children, but let's look at the future and what is being put in place that can be extremely destructive to the human rights of our children.

The Co-Chair (Ms. Carolyn Bennett): Hold your thoughts.

Nancy Karetak-Lindell.

Mrs. Nancy Karetak-Lindell (Nunavut, Lib.): My questions were answered.

The Co-Chair (Ms. Carolyn Bennett): Really? Okay.

Bonnie.

Ms. Bonnie Brown (Oakville, Lib.): Thank you, Madam Chair.

I'll try to make two quick points. One is that I've heard a lot about the problems of parents trying to take care of and bring to flower their children who are disabled. I haven't heard much about those children who do not have those parents or that family set-up. There's one page in one of these documents, “Children and Youth with Disabilities”, that is dedicated to child welfare, but it really is just a set of statistics.

As you go about developing your policies around children with disabilities, how much time is being taken for children, say, in foster care or children who are in institutions? One of the reasons I raise this is it seems to me, as we live in this very materialistic world, we're going to have more and more children abandoned by parents who are crumbling under the stress of caring for them without sufficient support. So the state will become parent in more and more cases.

I remember when I went to the report of the national longitudinal study, one of the key members of that panel was just begging that we all begin to look at everything we're doing, not just with what we consider a normal family, but with those kids who don't have one. So I'm wondering what you're doing about that.

The second thing is how your discussion today is fitting in with what we've been discussing, and that is the actual existence of the Department of Human Resources Development. What I think I hear you saying is you do not want disabled children identified according to their lack of health. Therefore you don't necessarily want them assigned to the Ministry of Health, because they have certain areas where they're weak in health but other areas where they're strong. And you don't want them defined according to their possible contribution to the economy—that is, as a human resource. Rather you seem to agree with this committee, which in its latest document has suggested that Canadians are citizens first—not human resources, not on a spectrum of health, but rather citizens.

None of you answered Dr. Pagtakhan's question, which was, where should this be? So I leave it with you and we'll try again. Step into the exciting political world.

Voices: Oh, oh!

The Co-Chair (Ms. Carolyn Bennett): All of you, in whatever order, are invited to respond to both Wendy's question and Bonnie's.

Ms. Sherri Torjman: We have been talking for many, many years about where this should be. There have been debates in the country as to whether there should be a minister responsible for disability. We've gone back and forth on the issue. I'm not sure we have any correct answer or that there's a best answer to this.

All I know is there is an agenda right now underway in the country, and there seems to be some hope that we can actually do something positive and constructive and shape it in a way that will be inclusive. I'm really heartened by that. For the time being, that's really where we should be focusing in this agenda right now, and on supporting you in any way we can to help you push forward this agenda.

Ms. Connie Laurin-Bowie: On the issue of responsibility, the reason we don't have an answer—this is a good way to answer a question—is we are struggling with the future role of the federal government in terms of its support of the citizenship of people with a disability and how that relates to the charter. In the current system, other than through the courts, it's hard to envision exactly what mechanisms we have to make the federal government relevant to that issue.

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It's hard, and I think that's what you all are struggling with as well.

The Co-Chair (Ms. Carolyn Bennett): On that line, did you have a submission to La Forest in terms of the renovation of the Human Rights Commission?

Ms. Connie Laurin-Bowie: Yes, we did, but I'd have to recall it.

The Co-Chair (Ms. Carolyn Bennett): But did you think there could be a more proactive audit role for them, or...

Ms. Connie Laurin-Bowie: I'm really struggling to remember what our position was on the Human Rights Commission review. Essentially, I think our position was that we wanted to move away from a grievance type of process, but I can't remember the mechanics of what we proposed.

The Co-Chair (Ms. Carolyn Bennett): Thanks.

Dawn.

Ms. Dawn Walker: I wanted to make a comment on the stats and a little bit on the responsibility.

As I explained just before you arrived, I think, these pages are only excerpts from the chapter “Children and Youth with Disabilities” in the profile that is about to be released in August.

This is in words the way it is because we don't know. This is an Alberta study, and we don't have national information on how many children, within the child welfare system, have disabilities. That's why it's there the way it is.

So your issue is heard, and it's heard across the country. There is narrative before and after this that will also beg the question as to why we don't know more about children, within the child welfare system, who have disabilities, ranging from learning disabilities through to physical disabilities, and then those with complex needs and a combination thereof.

The other thing I learned in this process is that a number of families have more than one child, and children with disabilities often have siblings with disabilities. You therefore have the extended burden of parents who have a number of children with disabilities.

The Co-Chair (Ms. Carolyn Bennett): But will HALS pick that up? With your advice, will the new HALS help us with that vacuum?

Ms. Dawn Walker: Not that vacuum. It will help us with a lot of other vacuums, but not that one. There's no question on whether you're in the care of the state at all, and nothing on whether you have siblings.

In terms of areas of responsibility, I too have been thinking about this, both in and out of government, for a long period of time. The model I would have preferred to see it in, in terms of children with disabilities, is within a wellness model where all children are.

I haven't even talked to David about this, but I think it needs to be part of either Health Canada or HRDC. Just because it's a difficult decision to make we shouldn't be pulling away from making the decision; we have waited for so many years to be able to have an identified lead on the issue of children with disabilities.

Frankly, I don't care where you put it. Just do it. We really need to have someone take the lead on children with disabilities, and then they can work with all the other departments.

Ms. Sharon Hope Irwin: I see the bell, or I feel the bell; it doesn't go “tick-tock” but “ring-ring”.

I have two closing comments I want to make. I want to go to my last one first, just in case.

What can government do? When we're talking of these federal-provincial-territorial children and family initiatives, broadly called a national children's agenda, is there a way you can lever, or mandate, or see that children means all children? It doesn't mean just those who are easy to take care of, who are included in programs about parenting or in early childhood development services. To go to a parenting centre and not see a welcome there, in both words and in images, that kids with disabilities belong there, is a travesty of so many of the things we care about.

If there was a way of seeing that provinces could not leave out kids with disabilities, I think we'd move a long way to where we all want to be. It would also take care of a fair amount of the promotional stuff, because living it is often the best way of convincing other people to do it too.

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My last comment before that bell rings is to Ms. Lill.

As an early childhood person, I heard, 20 years ago, “Hey, it's easy to do it in day care. It's real hard to do it in kindergarten.” Then pretty soon we heard, “Hey, kindergarten, they can do it too. First grade is really the cut-off.” Pretty soon people were saying “Oh, sure, they can do it in kindergarten, first grade, and day care. When you really get to the serious grades, like grade three, then it's really hard to include everybody.” As we moved up, people were saying “Well, three is okay, it's junior high school that's tough.” Now that we've pretty well worked out the junior high school by doing it, people are saying, “Well, high school is really where the problem kicks in.”

Now we are at that next gate, and you're right, there is a black hole after that graduation from high school that we haven't even begun to articulate the boundaries of, except with a few of those points of light, or best practices, or actual situations that people have managed to create across the country that need to be more visible to everybody else.

The Co-Chair (Ms. Carolyn Bennett): Wendy, do you feel... or do you want to just ask your question again?

Ms. Wendy Lill: I guess I'm concerned about the idea of national standards. I get very fearful when I see provincial governments moving in directions that do not appear to be in the least bit inclusive. You therefore have to ask what role the federal government has in withstanding these kinds of assaults.

As David mentioned, parents have their aspirations, and I would say, from my CACL meeting, what parents ask for is a commitment that this government will guard the human rights of their children. I see that the directions we are moving in will not in fact be guarding our children's human rights.

Of course they're all the same—your child, mine child. All children, with whatever abilities, have the same citizenship. How do we make sure we have the safeguards in place as a national government? I have great regard for our need as a national government to set the standards and set them high. How do we do that?

The Co-Chair (Ms. Carolyn Bennett): Rey, do you have a comment?

Mr. Rey Pagtakhan: Very brief.

I'm glad you mentioned the need for a wellness-type approach. I think I can boast, if I may, that in my riding is one of the best wellness institutes or centres in the country, perhaps in North America. It is still underutilized in terms of what else it can do.

One example is people with disabilities. I have one constituent... At least now they are looking into this.

I would invite your group to look into that, into what way the facility could be used to advance your cause in terms of prospective groups. Call it a study, call it a pilot project, but by whatever name the idea is to start the thing going.

Now, in terms of standards, if I recall correctly, even Quebec signed the health accord, not the other kind of accord but the health accord.

I think the conditions you reviewed here as examples of disability, the chronic conditions, Ms. Walker, are all medical conditions, all health conditions. Therefore, I would submit—even to Mr. Paul Crête, with all due respect—that even Quebec would agree to national standards, at least on this issue. With a cooperative spirit, I think, we could achieve a great deal.

I will just end with that.

The Co-Chair (Ms. Carolyn Bennett): That was the Manitoba commercial.

[Translation]

Mr. Crête.

Mr. Paul Crête: National standards are not the problem; it is, rather, the nation itself that must be defined. But, that is another question altogether.

Ms. Walker, you were wondering how we could ensure accountability with respect to the enforcement of the international convention on the rights of children. In order to do this, should provincial governments get together with the federal government when the time comes to account for the way the provisions of this charter have been enforced? Would it not be a good way to make them accountable for this, rather than artificially putting the responsibility on the shoulders of the federal government? If, as was said earlier, we do not have statistics concerning this issue, it is because the federal government is not equipped for that. It is not really its business.

The Co-Chair (Mr. John Godfrey): Was that a comment?

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[English]

The Co-Chair (Ms. Carolyn Bennett): We'll take it as a comment.

I think we've all learned a great deal this afternoon, particularly around the outcomes piece. We want to know as a government whether we're getting where we want to be going. Are we asking the right questions? Are we measuring the right things? This whole new project in terms of actual quality of life and full citizenship is obviously a big piece of work, and we're thrilled that we have fantastic people like you to do it with.

Thank you again.

Some hon. members: Hear, hear!

The Co-Chair (Ms. Carolyn Bennett): The meeting is adjourned.