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37th PARLIAMENT, 1st SESSION

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

EVIDENCE

CONTENTS

Tuesday, March 19, 2002

1535

The Co-Chair (Mr. John Godfrey (Don Valley West, Lib.))

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

The Co-Chair (Mr. John Godfrey)

The Co-Chair (Ms. Carolyn Bennett)

The Co-Chair (Mr. John Godfrey)

The Co-Chair (Ms. Carolyn Bennett)

The Co-Chair (Mr. John Godfrey)

Ms. Monique Guay (Laurentides, BQ)

The Co-Chair (Mr. John Godfrey)

Ms. Guay

Mr. John Godfrey

Ms. Carolyn Bennett

Ms. Wendy Lill (Dartmouth, NDP)

Mr. John Godfrey

Ms. Carolyn Bennett

The Co-Chair (Mr. John Godfrey)

Mr. Wendall Nicholas (Individual Presentation)

The Co-Chair (Mr. John Godfrey)

Mr. Wendall Nicholas

1545

The Co-Chair (Mr. John Godfrey)

Ms. Joanne Francis (Client Advocate, Mohawk Council of Akwesasne)

1550

1555

The Co-Chair (Ms. Carolyn Bennett)

Ms. Joanne Francis

1600

1605

The Co-Chair (Mr. John Godfrey)

Dr. Rose-Alma McDonald (Consultant for the Mohawk Council of Katenies and the Assembly of First Nations, Katenies Research and Management)

The Co-Chair (Mr. John Godfrey)

1610

Ms. Monique Guay

Ms. Diane St-Jacques (Shefford, Lib.)

Dr. Rose-Alma McDonald

The Co-Chair (Mr. John Godfrey)

Dr. Rose-Alma McDonald

The Co-Chair (Mr. John Godfrey)

Mr. Wendall Nicholas

The Co-Chair (Mr. John Godfrey)

Dr. Rose-Alma McDonald

1615

1620

Ms. Joanne Francis

Dr. Rose-Alma McDonald

1625

The Co-Chair (Mr. John Godfrey)

Prof. Michael Prince (Lansdowne Professor of Social Policy, Faculty of Human and Social Development, University of Victoria)

1630

1635

The Co-Chair (Mr. John Godfrey)

Mr. Larry Spencer (Regina--Lumsden--Lake Centre, Canadian Alliance)

Dr. Rose-Alma McDonald

Mr. Wendall Nicholas

The Co-Chair (Mr. John Godfrey)

Prof. Michael Prince

1640

The Co-Chair (Mr. John Godfrey)

Ms. Monique Guay

1645

The Co-Chair (Mr. John Godfrey)

Mr. Wendall Nicholas

The Co-Chair (Mr. John Godfrey)

Dr. Rose-Alma McDonald

1650

The Co-Chair (Mr. John Godfrey)

Ms. Joanne Francis

The Co-Chair (Mr. John Godfrey)

Prof. Michael Prince

The Co-Chair (Mr. John Godfrey)

Ms. Wendy Lill

1655

Mr. Wendall Nicholas

1700

The Co-Chair (Mr. John Godfrey)

Mr. Alan Tonks (York South--Weston, Lib.)

The Co-Chair (Mr. John Godfrey)

Prof. Michael Prince

Dr. Rose-Alma McDonald

1705

The Co-Chair (Mr. John Godfrey)

Prof. Michael Prince

The Co-Chair (Ms. Carolyn Bennett)

The Co-Chair (Mr. John Godfrey)

The Co-Chair (Ms. Carolyn Bennett)

Prof. Michael Prince

The Co-Chair (Mr. John Godfrey)

Ms. Joanne Francis

1710

The Co-Chair (Mr. John Godfrey)

Mr. Tony Tirabassi (Niagara Centre, Lib.)

Mr. Wendall Nicholas

Mr. Tirabassi

Dr. Rose-Alma McDonald

1715

The Co-Chair (Ms. Carolyn Bennett)

Mr. Wendall Nicholas

1720

Ms. Joanne Francis

The Co-Chair (Mr. John Godfrey)

Ms. Joanne Francis

The Co-Chair (Mr. John Godfrey)

Prof. Michael Prince

The Co-Chair (Mr. John Godfrey)

Prof. Michael Prince

1725

The Co-Chair (Mr. John Godfrey)

CANADA

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

NUMBER 020

1st SESSION

37th PARLIAMENT

EVIDENCE

Tuesday, March 19, 2002

[Recorded by Electronic Apparatus]

¹ (1540)

[English]

The Co-Chair (Mr. John Godfrey (Don Valley West, Lib.)): We now, jointly and severally, declare this meeting open.

The first order of business is to apologize to the guests for their treatment by overzealous security officials. You made the huge error, unlike any parliamentarian ever, of showing up early, and because you were so well behaved, you were made to wait outside, I understand, until 3 o'clock, for a half an hour.

The Co-Chair (Ms. Carolyn Bennett (St. Paul's, Lib.)): Who makes those rules up?

The Co-Chair (Mr. John Godfrey): I don't know. It's not just that you were dealt with in this fashion, but I think it's worth our while, as parliamentarians, knowing what the rules are. Perhaps we could find out why people who show up an hour early are made to wait outside for half an hour, until 3 o'clock--why not make them wait outside for the whole hour?

Mike will report, and you will please accept our apology. This is no way to treat guests of any sort.

The Co-Chair (Ms. Carolyn Bennett): If it makes you feel any better, I get stopped at the Senate every day.

The Co-Chair (Mr. John Godfrey): I hope you have no ambitions in that regard.

The Co-Chair (Ms. Carolyn Bennett): No, but the security of the Senate is different, and they don't seem know who we are. Oh well.

The Co-Chair (Mr. John Godfrey): I have one piece of business that, if you wouldn't mind, dear guests, I would like to clear up. I just need a quick agreement from those who are members of the “at risk” subcommittee that normally would meet tomorrow afternoon, and there's quite an overlap. I would like your consent to invite a possible presentation by Tim Sale, the Minister of Family Services and Housing in Manitoba, on the evaluation framework for Healthy Child Manitoba.

[Translation]

Do I have your authorization? This is not definite yet but the rule is that I should ask you before inviting a provincial minister. Is it approved?

Ms. Monique Guay (Laurentides, BQ): From which province is this minister?

The Co-Chair (Mr. John Godfrey): From Manitoba.

Ms. Monique Guay: Yes,yes.

[English]

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

The Co-Chair (Ms. Carolyn Bennett): And I need something from my subcommittee. Our disability tax credit report will be tabled in the House of Commons on Thursday morning at 10:05 and released at the same time, and we need to know from the disability subcommittee whether they would like to do a press conference at 11.

Yes? Okay.

Ms. Wendy Lill (Dartmouth, NDP): I would just like to extend Libby Davies' regrets. She couldn't be here today, because she's on House duty, and she's the only one we have right now. She wanted to be here very much to hear what was going on and to hear your presentations, but I will transmit the information to her.

The Co-Chair (Mr. John Godfrey): We haven't quite worked out our Mutt and Jeff routine, but we hope you'll be richly amused by it. On behalf of both our subcommittees, which, as you may have gathered, have a certain degree of overlapping membership, so we never know which hat they're wearing--but they're all splendid people, I can assure you of that--we want to welcome all of you.

The two subcommittees see themselves behaving horizontally. That is to say, we try to take issues that affect a number of government departments, children, aboriginal children, and disability, and we try to use the power of the committee to get the government to think and behave more horizontally on issues that don't lend themselves to silos. So we're being doubly horizontal, if I can put it that way, because we're now trying to combine two of the interests of the committee, that is to say, the area of the children and youth at risk subcommittee, which is doing a long study on aboriginal kids and normally would meet Wednesday afternoon, and the abiding interest of this committee in disability. I think this is now a yearly event. We come together to deal with children with disability, and today we're delighted you're here, so that we can collectively deal with aboriginal children with disability.

The Co-Chair (Ms. Carolyn Bennett): I would just like to say that in all we do in talking about parliamentary reform and better governance for this country, with due apologies to the work that you all do and with huge respect for all you try to do in this rather difficult system, the issue of aboriginal children with disabilities is, I think, the most difficulty thing we face in this country, because of all of the silos and all of the levels of government. If we could get your piece right, I think we would feel that the rest of the country was working pretty well, because it is the most challenging thing we face. As the two subcommittees, we felt that if we could spend some time thinking about what's working and what's not working for this population of Canadians, we might better understand how we could do better with everybody else. So thank you for coming.

The Co-Chair (Mr. John Godfrey): Let's begin by welcoming Wendall Nicholas, who is an old friend to some of us here. We're just delighted to see you in your current incarnation as an individual.

Mr. Wendall Nicholas (Individual Presentation): Thank you. Bet you didn't know I was an individual, did you?

The Co-Chair (Mr. John Godfrey): I knew you were a character, but that's another issue.

Mr. Wendall Nicholas: Good afternoon, Dr. Bennett, Mr. Godfrey, and members of this joint committee.

I understand that we're here today to talk about the study you are concentrating on concerning aboriginal children with disabilities, their relationship to being on and off reserve, as well as those federal programs that are available to them. It's certainly my pleasure to be here today to help in this discussion, and I have some colleagues here with me who I'm going to introduce to you.

Joanne Francis is a member of the Mohawk Nation at Akwesasne. She is director of intervention for the Akwesasne addictions and counselling program. Ms. Francis holds a degree in nursing and a masters in social work, and she will provide you with an overview of her work in the community addressing the needs of people with disabilities. Ms. Francis has received community, national, and international acclaim for her advocacy work. She is joined here today in the observation seats by her colleagues Giselle Cook and Robin LaDue.

Dr. Rose-Alma McDonald, also a member of the Mohawk Nation of Akwesasne, is owner of Katenies Research and Management Services. Dr. McDonald holds a Ph.D. in education, and is certified as a permanent school superintendent. Her work has included being director of education in Akwesasne, and twice at the Assembly of First Nations. Dr. McDonald has authored several key reports in support of first nations health, education, and social justice, including “Injury Prevention and Indigenous Populations”. This paper, written for the Assembly of First Nations, will be presented at the sixth world conference on injury prevention in Montreal, May 12-15. Her research associate, Carol Fisher, is also here this afternoon as an observer.

Pamela Hunter, who is Moose Cree, is a social worker. She is a policy analyst with the social development secretariat of the Assembly of First Nations. Her principal role is to facilitate the implementation of recommendations to improve children and family services delivered within first nation communities. Her work also includes monitoring and evaluating federal initiatives that affect first nation people with disabilities. Ms. Hunter is here to gain insight into the study undertaken by this committee, and she joins us in the observation chairs.

Marilyn Carpentier is a member of the Algonquin First Nation at Kitikan Zibi. She is national coordinator of the Canadian prenatal nutrition program facilitated by the health secretariat at the Assembly of First Nations. Ms. Carpentier is also here as an observer.

I am Wendell Nicholas, and I am a member of the Maliseet Nation at Tobique. I am co-chair of the national first nations and Inuit working group on injury prevention and control. I am a member of the indigenous caucus of the World Blind Union, a member of the aboriginal reference group on disabilities issues, which advises HRDC on its programs affecting our people, and a volunteer director with the Gignul Non-Profit Housing Corporation here in Ottawa. I'm here today by invitation of Mr. Godfrey, and, sir, I thank you so much for the privilege of being here today with you and your colleagues.

I'm here to lend my perspective as a first nation person with a disability. Our presentations will focus, as best we can, on first nations children with disabilities. So I'd just like to take a very quick moment to give you an overview on who these people are and some observations.

There are 80-some first nations across the country, which are located on 633 reserves. In these communities there are more than one million first nations people. As you know, first nations people are one of three constitutionally recognized peoples in section 35 of the Constitution Act of 1982. Section 35 recognizes and affirms existing inherent and treaty rights. First nations children with disabilities, holders of these inherent and treaty rights, live with a rate of disability that is more than three times Canada's national average.

Health Canada this year invested around $600,000 on injury prevention in first nations and Inuit communities. On average, stretched out across the land, this represents around $900 per community. According to the Journal of American Indian Education, fetal alcohol syndrome, in effect, is now the leading cause of developmental disability within our community. I highlight these two examples because, obviously, there's a lot we need to do in the area of prevention, and there's a lot we can do in taking concrete steps.

There is only one post-secondary institution in North America that offers a degree program in injury prevention that is targeted on first nation people. The United Tribes Technical College in Bismarck, North Dakota, offers an associate of applied sciences degree program in injury prevention, and these folks do a tremendous amount of great work with the very little they have.

Members, I want to tell you that first nations children deserve every opportunity afforded to Canada's children, including the opportunity to live in safe housing, drink clean water, eat affordable and nutritious food, have access to the supports they need, and be free from the threat of injury, violence, and poverty.

I now call on my colleagues to make their presentations. Thank you.

¹ (1545)

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

Ms. Francis, would you like to carry on?

Ms. Joanne Francis (Client Advocate, Mohawk Council of Akwesasne): Sure.

As Wendall mentioned, by training I'm a registered nurse, and I have a masters in social work. I've been working in the area of disability for 25 years. During that 25 years I've appeared before many committees and read many federal reports on disabilities specific to aboriginal peoples. It feels like the first time. I guess the progress I have witnessed in my time as an advocate has been slow coming, but there's also been a lot of hard work and recognition that has come out of it. My biggest reward is that I'm seeing results in the communities now. The changes at the community level are occurring, but they're sporadic, at best. I think a lot of that comes from the realization of just how prevalent disabilities are within our communities.

One area I want to highlight is the issue of mental health among our children in aboriginal communities. We have done a lot of work in the area of disabilities per se, and for the last 18 years I have been working in the area of drugs and alcohol. Within the last six years there was an amalgamation of the NNADAP program with mental health and stuff, so the natural progression was to just fold into the mental health. So within that seven-year period we've been.... Actually, in Akwesasne, with the uprising we had in 1990, the civil war, there was a need for mental health services to be brought on site. So at that time therapists came into the community to help with the post-traumatic stress issue. A lot of that was focused on the children, because they just had no clue about what happened and why family members were fighting each other.

What I've noticed from my observations is that those mental health practitioners who did come into the community were predominantly non-native. They were the experts who came in, just a group that was gathered and brought into the community. They have stayed for 12 years. So for a brief crisis intervention, they're still present. I have to say that during that time the balance has changed. The non-native therapists have decreased, and our native therapists have increased, with people graduating and coming back to the community and working. So it's evening out a bit.

The most obvious thing with the therapists and non-native psychiatrists who did come into the community was the lack of awareness on the behavioural issues we deal with on a daily basis. A lot of that, I have to say, is culturally based, because of who we are, what we are, as Mohawks, and how we operate. A lot of times what I witnessed was over-prescribing of medications, because of not being aware of the cultural clues. For example, one child was given the label, at six years old, of being schizophrenic, and his medication load was quite high and strong. When we came to question it, we started to inquire with the family. They were a traditional-based family, and through that point, we discovered that this child was, in fact, having visions and seeing things. He had a gift, and the non-native psychiatrist did not see it that way. He just saw it as a pathology. When we made the connections through the culture, through the readers and healers, and put ceremonies through for this young boy, he was fine. It turned out that he just needed to be moved. The family had to rearrange the rooms. That was one intervention that showed clearly that something was not working here.

¹ (1550)

It became clear very quickly that we had to do something to intercede with this stuff, so that there was no more of this misdiagnosis and over-medicating.

Another thing we witnessed concerned the teachers, a lot of them being non-native and dealing with children who were exhibiting behavioural problems in the classroom. There were actually a number of parents who appeared at our doorstep saying, I don't know what to do with her or him. Teachers said, if he is not on Ritalin, he can't come back to class. Teachers were prescribing Ritalin to parents. The parents were showing up at the family doctor or the clinic and saying, I need Ritalin. They didn't have a clue what Ritalin was, what it did, or how it would affect their child. In some instances our physicians on reserve prescribed it without any kind of assessment or diagnosis. They just said, Ritalin, okay. Try this for a while and come back.

That behaviour went on for a while, and then we started to notice this pattern. Children's behaviour did change, and the parents would cut them off it or put them back on it. At March break they would stop the Ritalin, not knowing the effect of it, how long it needs to get into the body, and all that. So we saw some real problems developing. The children didn't know what was going on. They just knew they didn't feel right, they didn't like this. Their behaviour changed, and the teachers would respond to them inappropriately.

We did a major search. We joined up with the Royal Ottawa and CHEO to try to fast-track mental health services for our children, not just at Akwesasne, because there was no way for aboriginal children to seek mental health services in a timely fashion. Our children were being sent to North Dakota at six- or nine-month intervals while a psych assessment was being done, or they were being brought into outlying communities, where they were taken weekly or bi-weekly to the Royal Ottawa for assessments to be done. We could do that, is what our basic thinking was. The money we could save by not sending them to South Dakota. This was through the child welfare system. That was one of the recognized places, through Indian Health Services in the States.

¹ (1555)

The Co-Chair (Ms. Carolyn Bennett): Was that an aboriginal or a native health centre?

Ms. Joanne Francis: It was a native facility, but there were no native professionals in there, the same issue we were dealing with at home.

Those things brought us to ask what the literature says. So in 2000 we received a grant from the Minister of Community and Social Services to do a literature review. We found that 98% of that literature was showing examples of mainstream mental health on aboriginal peoples, and predominantly from the States. I believe it was for a royal commission that a Montreal group of psychiatrists had come together and done a big series on aboriginal mental health and stuff. That was about the most recent thing we came across in Canada, and that was the early 1990s. But all of that was zero benefit to the community. What they learned did not necessarily filter down into the community, so that it would have impact on how we delivered services in our community and how our children and members of the community receive services.

I guess the other part that came out of our liaison with the Royal Ottawa and CHEO was that most mental health problems in aboriginal communities sprang from social, emotional, behavioural problems.

We have an Akwesasne satellite office based at the Royal Ottawa Hospital, and we have clinics there every Monday. We bring our children up. Also, we have received referrals from New Brunswick, Saskatchewan, and elsewhere. Through that, we've discovered that with those children whose mental health diagnosis is not fixable through medication or treatment or therapy, there's usually an organic origin. It's a brain injury of some kind or some kind of damage, usually through FAS/FAE or trauma as a small child. So those things bring us back to the disability issue. We have found a large number of children who have presented with behaviour problems, but when it is organic in nature, there's not much else we can do for them, except provide services.

In addition to that, from way back in 1986, we've received lots of funding through the Secretary of State and then HRDC. Through those efforts and fundings, what we've done is research, trying to identify a long-term strategy for persons with disabilities in Akwesasne, something that would be workable within the community.

We have been focusing on an Akwesasne disability consulate. Because of our geographic location and the multiple jurisdictional issues that cross into our community, it was felt by a bunch of us and the leadership that a disability consulate makes sense. Our community is dissected by the international border. We have a very mobile community, we move back and forth across that international border as if it were crossing the street. It's nothing to us, it's no dilemma. But when it comes down to receiving services, that's where the barriers pop in, because residency is usually an issue. If you reside in the province of Quebec or Ontario, or you're a New York State resident, you're American or Canadian, it all comes back into those jurisdictions. When you splinter it further, it goes into counties.

Ultimately, our goal is to develop a community framework for the provision of services for individuals with disability. How can we avoid duplication, with all the services that are currently coming into the community, and how can we meet all the requirements from the funding source without breaching anybody's requirements or breaking the law in any way, while still maintaining our status as members of Akwesasne, community members who have lived and grown up there and don't want to leave?

º (1600)

We have actually been told by many of our health benefits, this is the best you're going to get here, maybe you'll do better if you move to a city, encouraging families to leave their community and move away to try to enhance their access to services. But from my experience and from feedback from some families who have taken that drastic move, it's not true. There is not really a panacea of improved services out there. They end up coming back into the community. Through that process, we got a glimpse of what was out there, but also realized that we've got a little bit more going on. The flexibility, I guess, is the big determinant, because we are somewhat flexible as to how we deliver our services.

We are currently receiving funding for a project looking at public and administrative disability awareness, and there we're going to start with our leadership in the community and work our way down with public awareness, re-educating the community on disabilities. It's not just the visible disabilities, it's not just me sitting in a wheelchair, it's people who are hearing impaired, even going down to someone with asthma hauling paper all over the place. We want to develop an intergovernmental strategy, a means of access to government to find out what's out there, what's coming up, where the RFPs are, and where we can gain funds to support the needs of persons with disabilities in the communities.

Also, as a community, we are looking at developing an Akwesasne disabilities act, because with all the jurisdictions we are faced with, we have to find something that is going to work within the community, set the parameters of what's acceptable and what's not acceptable, and come to that decision on our own. Through the the Akwesasne focus group, which is a community-oriented mutual support group of family and friends of persons with disabilities, we've just come together to present those issues to the members, to see how they envision something like this working. Everybody knows about the Americans with Disabilities Act and the recent Ontario disabilities act. So what do those two do for us, and how can we benefit from them, and if we can't benefit, how can we make something that will benefit us in the best way? It's a major undertaking, it's a thought process, and it's in its exploratory phase, but I feel confident it will be something that will work, just because of the sheer determination of the group I'm working with.

º (1605)

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

I must say that when you think about Akwesasne, two countries, two provinces, one state, so many counties, and three languages, it's sort of like New York: if you can make it there, you can make it anywhere. We should sort that out, my goodness.

Dr. McDonald, I think that's an appropriate segue, since you are also are from the community.

Dr. Rose-Alma McDonald (Consultant for the Mohawk Council of Katenies and the Assembly of First Nations, Katenies Research and Management): Thank you, and good afternoon. It's nice to see you, John. It's nice to meet you, Dr. Bennett.

It's a real honour for me to be here. I wear lots of hats. I have the great honour of being a consultant at the national level for the Assembly of First Nations. As Wendall mentioned, I was director of education, not once, but twice. I have a little bit of, I guess, a punishment thing here: I had to come back and do it again. The first time I was director for the Assembly of First Nations, we did the $6 million study Tradition and Education: Towards a Vision of Our Future. When I came back, we did kind of a revisiting and talked about inherent right to education in the 21st century. I'm also a certified school superintendent, and have been a director in my own community of Akwesasne. I created our first ever Akwesasne Mohawk Board of Education. That's been in place since the early eighties.

When I was asked to do a little bit of bio for the committee, I was writing about myself saying I've been working with education and with children at risk since the 1970s. So I thought, my goodness, it's been a long time already. What have the impacts been? Tradition and Education was an education document, but it was all about children at risk. It was all about aboriginal children and the things first nations communities don't take for granted that mainstream Canada does.

John knows too that I also have another life in Texas. I spend part of my time in Texas and part of my time in New York State. I have a home in Akwesasne. So I have the ability to see what mainstream society offers to children, compared with what our children get. Also, because I'm licensed as a school superintendent in the State of New York, I know what, in mainstream society, schools provide to children that we do not take for granted in first nation schools, starting with special education. Special education is not something that's provided or funded adequately by the Department of Indian Affairs, and we have children, as Joanne was saying, who are at risk and do have social and emotional problems. There's just not the proper funding for special education.

When we did Tradition and Education, we looked at the quality, management, resourcing, and jurisdiction of education. We had 57 recommendations that were made in 1989 and have yet to be implemented by the Government of Canada.

I brought several documents with me. I was told we had five minutes. I have a presentation in front of you that I understand will go into the record for the committee, so I will talk about the actual presentation, but I did bring several documents with me that I hope the committee will have copies of. One of them is “To the People Who Are Able”, a document I did for the Assembly of First Nations on children and disability. Wendall asked me to do that particular report. The date on it already is December 6, 2000. That particular document really changed my life. I've worked in education for a long time, and when I did the research on this.... Do the members have a copy of this report?

The Co-Chair (Mr. John Godfrey): We have an issue of protocol, because we want to be very respectful of the official languages policy of the Parliament of Canada. So we, as a rule, do not distribute documents unless they're in both languages, and only if we have the permission of those who could allow it. We don't have the permission, and that's fair. We can have them translated and made available subsequently.

º (1610)

[Translation]

Ms. Monique Guay: We will have them translated and we will study them after.

Ms. Diane St-Jacques (Shefford, Lib.): It is translated. It is not this document?

[English]

Dr. Rose-Alma McDonald: There are three documents, two available in the official languages. Again, my apologies.

The Co-Chair (Mr. John Godfrey): Which is the missing one?

Dr. Rose-Alma McDonald: The one that I was speaking to, “To the People Who Are Able”, was the one of which we couldn't find the French translation in time for this meeting, so my apologies to the committee.

The Co-Chair (Mr. John Godfrey): Go ahead, Wendall.

Mr. Wendall Nicholas: Mr. Chairman, it's a matter of policy with the Assembly of First Nations that documents are produced in both languages as well. Regretfully, we couldn't locate all the documents we produced in the other languages, but we have copies of some of the documents on the table, if members are interested in taking a copy later.

The Co-Chair (Mr. John Godfrey): If there is an untranslated document, and I think the only one that applies to is the deck, we will have that translated, but you could refer to it. I think that's the best way of moving ahead, and if we have both documents present, we can talk about page 3. Otherwise, you can make it up.

Dr. Rose-Alma McDonald: I only wanted to mention that the documents exist, one specific to child disability that I prepared for the Assembly of First Nations and was accepted by resolution in December 2000 by the Assembly of First Nations.

There is a second document that is available in both of the official languages, and that one is on early childhood development, the landscape document. That one really looks more at the development of children from prenatal to birth to the age of six, and it talks about how important it is for our women to be sure they don't drink alcohol, they take care of themselves, there isn't smoking around them, there is proper care. Because we know that if our children, even before they're born, are at risk, we need to do prevention now. FAS/FAE, for example, is 30 times the rate for aboriginal children it is for mainstream Canada, so we know it's preventable. These are the kinds of things that are in this particular document, and there is a strategy in there for what we can do as aboriginal people, but with Canada, in prevention. We also know it costs about $1 million to about $1.5 million in a lifetime to take care of somebody with FAS/FAE, so it's an investment by the government to make sure you prevent that particular disability.

The other document I brought that also is available in the two official languages is the national policy review on child and family services. That also talks about children at risk. So, Mr. Chairman, I'm just going to go very quickly through my deck.

Children are the most precious resource of our nations. They are the link to the past generations, they are the enjoyment of the present generations, and they are our hope for the future. Aboriginal children are the fastest growing segment of the aboriginal population; in 1996 40% of aboriginal people were younger than 17, compared to 21% for Canada. The fertility rate is 69% higher than the rate for Canada and is twice the national rate, so we know that by the year 2015 there will be approximately 277,000 children aged zero to 17 of aboriginal ancestry in Canada.

Yet without healthy, socially developed children and youth, we have no future. Without them, we have no guarantees for any of them beyond today. First nations communities are in crisis, and first nations children are forced to live under third world conditions. Basic infrastructure, like housing, plumbing, roads, communications, electricity, and other things average Canadians take for granted, are severely lacking or non-existent in many first nations communities. I've lived in some of those communities. I've been up in Davis Inlet, I've been up in Nunavut, I've seen some of these places.

According to the aboriginal people survey, 31% of the Indian register population has a disability, and we know that rate is higher. In Akwesasne, for example, we have looked at the world health definition of disability. It includes diabetes, heart diseases, so it's higher; it's not 31%, it's probably more like 80% in our community. We also did, as Joanne mentioned, an Akwesasne disability consulate study, and we do know that's an accurate number.

According to Health Canada, injury is a major cause of death among first nation young people aged 15 to 24, at a rate of 86%. Disability in first nation children creates a life expectancy at birth seven to eight years less than for Canadians generally. Census figures indicate that income of nine out of every ten aboriginal persons living with a disability is below the poverty line. The tuberculosis rate among the registered first nation population is nine times the national average.

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As I mentioned earlier, fetal alcohol syndrome and fetal alcohol effect are the result of alcohol abuse. The estimated cost of meeting the needs of someone is $1 million to $1.5 million. FAS is 30 times that of the general population.

Death rates for infants from injuries is four times the rate of non-first nations infants. Death rates from other causes, such as birth defects, respiratory illness, and low birth weight, are also significantly higher for infants.

As Wendall mentioned, we also did an injury prevention paper that will be released in Montreal in May. I would say that these are underestimates for the actual numbers in aboriginal communities.

If you compare us to mainstream Canada, the ninth annual report on child poverty in Canada says 1.3 million Canadian children live below the poverty line. That's 400,000 more than 10 years ago. The cost of bringing every Canadian child out of poverty would be $12 billion. In Ontario alone there was a 91% increase in child poverty over a nine-year period, compared to the national average increase of 27%. According to the Canadian Council on Social Development, adequate income and child development are the key determinants of the health of a population long-term. God forbid that you're aboriginal, you live on a reserve, you have a disability, and you're a child. God forbid.

If child poverty is a Canadian crisis, where does that leave our first nations children? Our children face inadequate nutrition, substandard housing and sanitation, unemployment, poverty, discrimination, racism, violence, inappropriate or absent services, and high rates of physical, social ,and emotional illness, injury, disability, and premature death. How does poverty relate to disability? Poor health and poverty among first nations people causes higher rates of disability and makes existing disabilities worse. The quality of life for first nations people is significantly diminished when they have a disability and they are poor.

The problem continues today: too many government promises. Still the needs of first nations children are not being met. In 1981 there was a report of the special committee on the disabled and handicapped, the Obstacles report. In 1993 there was the Standing Committee on Human Rights and the Status of Disabled Persons, completing the circle. There was in 1993 the United Nations declaration on the rights of indigenous peoples. In 1996 there was the federal task force on disability issues, and also the royal commission on aboriginal peoples and Gathering Strength. What is very frustrating for me is that I've been in this business for 30 years, I've been national director of education twice, I've come and gone in and out of this business, and I haven't seen anything change or improve. If anything, I've seen it get worse.

So what is required? A national strategy on first nations disability: access, resources, support. We need housing. We need assisted living devices. We need barrier design. We need retrofitting. We need education, transportation, integrated learning, alternative media, work, equity, training, accommodation. We need community awareness, as Joanne was saying. We need leadership awareness too. We also need Canadian public education to the crisis our first nations people are in. We need prevention for our children, our families, our young adults, prevention of suicide rates. We need research. I have my pile of research here, and there's more. We don't need to just be pumping paper, we need to implement what's in the reports. We need to implement the recommendations. We need to implement all the things that came out of these standing committees before.

We also need support. We need income support, we need income tax structure, we need a Canadian pension plan that meets our needs, social assistance. We need advocacy, peer support, communications. We need care. We need health. We need daily living. We need independence.

The United Nations convention on the rights of the child, article 24(1) states:

States Parties recognize the right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health. States Parties shall strive to ensure that no child is deprived of his or her right to access to such health care services.

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There are benefits in the government's making some investment in children. I know the government has made announcements about early childhood development, but there haven't been dedicated dollars for aboriginal people in early childhood development.

Poverty is an important determinant of health and disability, and if economic and community conditions can be improved, health and disability can be affected. Early medical treatment and detection can make child disability less likely. Prevention and community education can decrease infant mortality rates and incidences of alcohol abuse and violence, which are major determinants of child disability, and the costs to society and for rehabilitative services can be reduced if the number of disabilities can be reduced.

In the case of pre-existing disabilities, the benefit to government would be less institutionalization of first nations individuals with disabilities. The general benefit, of course, would be enhanced independent living, an ability to stay within the family and in a familiar cultural environment, which is another problem for us, more employable educated first nations individuals with disabilities, fewer subsistence payments, and better quality of life. Also, there would be more accurate data on the scope of the problem, better coordination of the services, and identification of need.

The Prime Minister, on December 6, 2000, said too many aboriginal Canadians live in third world conditions, and as a Liberal, he deeply believes the government has a responsibility to promote social justice, and he is committed to carrying out that responsibility. I think we're duty-bound to hold him to his promise.

As the next steps, we recommend that there be an information campaign. It's necessary to bring attention to the dire situation, and community education, as well as national public education, is required as a preventive measure. Also, the cost to government of continued inaction must be correlated to the savings for immediate and long-term intervention.

Without healthy, socially developed children and youth, we have no future. We have no guarantees for tomorrow without them.

Ms. Joanne Francis: She wants me to read.

To survive as a people, a culture, and a nation, we must attend to the health and well-being of all our special children.

Dr. Rose-Alma McDonald: Thank you. This is a very emotional issue for me. It's something that I've worked on almost all my career, something that's obviously very near and dear to my heart.

Thank you for the great honour of making this presentation.

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The Co-Chair (Mr. John Godfrey): There's nothing wrong with any of that, and I can't think of a better witness to address the interests of both committees. You're the perfect witness. Come back as often as you want.

Dr. Prince, you've been very patient. You are going to bring a whole other coast into play here, but I'm sure you have a national perspective as well. Welcome.

Prof. Michael Prince (Lansdowne Professor of Social Policy, Faculty of Human and Social Development, University of Victoria): Thank you, Mr. Godfrey and Dr. Bennett.

I teach at the University of Victoria in British Columbia. I'm non-aboriginal. I'm an academic who has written and taught and consulted and researched about social policy for 25 years, and I've worked with aboriginal communities for the last 10 years fairly intensively. I've worked on disability issues and written about them for about 15 years. I'm delighted that the joint subcommittees met last year and are meeting again this year. I applaud you and encourage you to continue your good work in advocacy.

I plan to speak to three items briefly. First, the reason I was invited, I believe, through one of your research directors, Dr. Bill Young, was a study I did last June for the Canadian Policy Research Networks, Judith Maxwell's think-tank, CPRN or RCRPP. That study was called “Governing in an Integrated Fashion: Lessons from the Disability Domain”. So I'll be speaking to you about government and governance issues and policy issues today. I wouldn't presume to speak on some of the community and cultural issues that my co-witnesses have spoken about. I want to talk to you about what my report said about aboriginal children with disabilities, their families and communities. And third, I want to offer some thoughts on what should be done in the way of reforms by the Government of Canada, within its own jurisdiction and in collaboration with other governments and sectors, to improve the lives and opportunities of aboriginal children with disabilities in their communities.

In my report I studied the governance regime, as I called it. I looked at five sectors, one of which was the aboriginal sector. The other four were the family or informal sector, the public sector, the private sector, and the voluntary sector. So it was fairly comprehensive, looking at what roles they played and how they interrelated and interacted.

If we go back to 1981, the International Year for Disabled Persons, and then we fast-forward to the year 2002, the disability policy domain does look different. Many things have been accomplished, many things have been done. Significant actions have been taken by all levels of government over the last 20 years on disability issues, I think partly thanks to this and past House of Commons committees. They have made a major contribution to that ongoing work and advocacy on the agenda. Yet many issues and problems remain, and some arguably have worsened over time; I think co-witnesses have just said that.

To characterize the public policy sphere in Canada, let me start with all children, and then I'll come to aboriginal children. The policy domain in Canada has the following characteristics: overlapping jurisdictions between the two orders of government; a bewildering complexity in the definition of disability in different programs and policies; a fragmentation in the nature of programs, eligibility criteria, levels and nature of benefits; a low priority as a policy field, quite frankly, among other social and economic policy areas that governments address; underfunding, chronically a common problem; generally poor coordination, both within a government and across governments; and multiple barriers facing people, be those attitudinal, administrative, organizational, geographical, or socio-economic.

Let me just speak briefly about what my report confirmed about aboriginal children with disabilities, speaking about the overall aboriginal sector, if I can call it that, the constellation of 60 to 80 nations Wendall mentioned, the over 600 bands. One of the good news items is the emergence of a substantial number of organizations dedicated specifically to aboriginal disability issues and to aboriginal youth issues. If you look at the landscape today as compared to 10 or 20 years ago, there are more service agencies, advocacy agencies, policy-oriented organizations dealing with aboriginal disability issues. We 've also seen the expression of aboriginal policy perspectives, frameworks, or vision statements on disbility, in the last five years in particular. And we've seen a growing involvement of the five major national aboriginal organizations in various federal and federal-provincial-territorial policy reviews and consultations over the last five years, on the national children's agenda and many other things.

º (1630)

What are some of the issues facing aboriginal families and communities with respect to children with disabilities? Let me just briefly highlight and summarize. The limited nature of services and supports on reserves you've heard about already here. Another one I was in a way glad to hear Joanne speak about so eloquently, as this is absolutely fundamental, is concerns about the cultural appropriateness of mainstream therapeutic, psychiatric, medical, and other clinical methods for assessing needs and prescribing interventions. The risks of over-medication have been described. With special education, there are the same concerns: professional or biomedical or therapeutic approach versus a more family- or community-centred indigenous approach. If we truly respect that they are founding peoples of this country, if we truly respect that they are a chartered constitutional group, then we must respect cultural appropriateness and the right of self-determination in deciding how to tackle these issues.

Underfunding is a problem, as are portability of services on and off reserve and entitlement to services off reserve.

There is what I call the jurisdictional morass. You can call it a swamp, you can call it whatever you want. This has become a rather perverse national political sport in this country, arguing which level of government is responsible for providing which services to which aboriginal peoples when and where. It's a tiresome and very sad debate. It does not do us honour.

There is then what I call déjà vu discourse, which our witnesses have beautifully illustrated today. What's déjà vu discourse? The sense that we've all been here before, that we've heard all this before. If you review the last two decades--and Rose-Alma mentioned a number of these reports--there's a circular repetition of words, declarations of plans and promises, then followed by external reviews of the record by parliamentary committees like your own, then governmental responses with a reiteration of the previously expressed plans and promises for action. And on and on it goes. Disability issues often seem trapped in a circle.

In a sense, aboriginal children with disabilities are the orphans of our social attitudes and our social programs in Canada. What should be done? Let me just throw out some for discussion and for your subcommittee's consideration.

There should be a Government of Canada policy framework and action plan on aboriginal children and youth and their families in communities, with a vision, goals, targets, and desired outcomes; a commitment by the Government of Canada to make regular public reports on agreed outcome indicators of child and community well-being, tabled in the House of Commons and routinely referred to this standing committee; evaluation of the experience to date of the first nations component of the national child benefit; an exploration of the merits of expanding the first nations component of the Canada prenatal nutrition program; a consideration of expanding the national children's agenda to include school-aged children, specifically school-aged children with disabilities; a consideration of expanding the early childhood development initiatives by adding a specific aboriginal component--a good start was made September 11, 2000 on this; an exploration of using the 115 or so native friendship centres that exist currently across the country as delivery agencies for supports and services for aboriginal peoples, whether on or off reserve, whether status or non-status; perhaps the establishment of multi-year framework agreements between the major national aboriginal organizations and relevant federal departments on funding child and family services for a variety of programs and benefits, including those for children with disabilities; and building on the throne speech promise last year of expanding significantly the aboriginal head start initiatives, an extension of that to include children aged 7 to 12, with a priority being given to inclusive services and supports in health, child care, and education.

º (1635)

Perhaps on the wider disability policy community debate, I would just conclude by saying, have the dollars follow the children and their families.'

Thank you very much.

The Co-Chair (Mr. John Godfrey): That's a rich policy prescription, and I'm delighted to say that at least in part, we are following your agenda in the subcommittee that would be meeting normally on Wednesday afternoon. Since we have many of the same players, we take to heart and note carefully all you suggest.

Given the fact that we have had such a rich series of presentations, we may be a little starved on the time side. I'm going to suggest that we get right at it, that we have initial rounds of perhaps four minutes for questions and answers. We may go a little over our time to get everyone in. We'll try to be fairly disciplined about this.

I would ask Larry Spencer to begin.

Mr. Larry Spencer (Regina--Lumsden--Lake Centre, Canadian Alliance): This is one time when I'd like to be last. That was an overwhelming presentation. It's hard to get your mind around all the need, and obviously, we've been presented with a need that's bigger than we can deal with in one chunk.

You've made some suggestions. Dr. Prince has just gone down a list faster than I can write. If you were going to prioritize two or three programs that the government could focus on beginning to help alleviate this, what would they be?

Dr. Rose-Alma McDonald: Head start and ECD are two of the main programs. I was pleased that my colleague mentioned early childhood development, because of the fact that we had major concerns that there wasn't an aboriginal set-aside in early childhood development. The AFN even submitted a proposal to the mainstream early childhood development to get funds allocated for us, which we didn't get. Again, as we said, the early childhood development time is the time when we want to work on prevention, to try to prevent disabilities before they can happen. Early childhood development and head start would be the main two.

Mr. Wendall Nicholas: I just have one quick thing. A number of initiatives and programs meant to help people with disabilities, including children, are delivered through the income tax structure, and because many first nations people are not a part of that structure, we don't benefit. There is a total absence in initiatives of CPP related to families that have children with disabilities and the benefits they can derive from those initiatives. I just wanted to mention that as well, sir.

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

Prof. Michael Prince: There are two or three here that really don't involve new money, in that they are programs already running and there's a timetable for evaluations in any case, so there are a couple that are already sort of on automatic pilot. As the national child benefit or the prenatal nutrition program come up for regular assessment in any case, that would be an opportunity for these committees, the Auditor General, or the departments.

I think the early childhood development initiative would be one. I remember talking last spring to Fraser Mustard about the ECDI, and I criticized the amount; I didn't think $2.2 billion was enough. He said, that's a pretty good platform, let's get the capacity up and running across the country and let's get some experience on the early childhood development initiative, let's see what the provinces do with it, and we can learn from that and build on it. I take guidance from him in his wisdom and experience and commitment in this area.

My only concern about the ECDI and others is that it's from zero to six, and your terms of reference right now cover birth to twelve. We need to start pushing that envelope up into the elementary school ages, and we have to include prenatal. A lot of programs stop around age four, five or six, depending on the province. That just builds in yet another program hurdle and transition problem in so many of our services. That's where the federal government, in conjunction with the provinces, could be thinking about smoothing out some of those transitions, which are artificial in respect of program times.

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The Co-Chair (Mr. John Godfrey): Thank you very much. The challenge is, once you get past six, you're dealing with a provincial jurisdiction, which I'm very acutely aware of

[Translation]

with the presence of Ms. Guay. There are limiting factors here.

Ms. Monique Guay: I want to congralute you for appearing before the committee.

I sit on the Sub-committee on children. We are now studying the status of native children from zero to 6 years and from 6 to 12 living on and off reserve. What we hear is not very good. There are a lot of problems and many situations which are not addressed and that need a very special treatment. You help us open our eyes, you flash a number of aspects, but we can't solve everything at once. This is almost impossible. We have to find short term, medium term and long term solutions.

I think it is a terrible thing to diagnose a six year old child as schizophrenic. It is hard to beleive. There is a lack of integrity somewhere. This is senseless; a six year old can't be schizophrenic. I know this illness well; there is some in my family. This condition appears much later than in childhood.

I do not know what we can do in the short term. If you could give us some direction...What can we do to help you?

You talked earlier, Mr. Prince, about overlapping. This can't be avoided. I don't want others to meddle in some jurisdictions, like our 5 $ day care program, which has been much talked about. If we do well what we have to do, I don't want us to be penalized because others don't do their part. So, there is this side where we need some balance.

Do you also have ressources in the volunteer sector? Do you have ressources, associations of persons with disabilities, groups that help handicapped native people that could be of use to you in the reserves , or even off reserve? I am interested in having this type of information. What can we do in the short term?

You have to keep doing what you are doing now. This is absolutely necessary but we would also like to have concrete proposals we could work on to make things happen faster for those children. I am all ears.

º (1645)

[English]

The Co-Chair (Mr. John Godfrey): Don't be shy.

Mr. Wendall Nicholas: I'll just make one quick point, and I'm sure we'll be able to move down with our colleagues. Thank you so much for your question.

When I met with Mr. Godfrey a couple of weeks ago, we talked about where we could start, some of the things in place that, with a bit of tweaking or a bit of work, could cause a lot of good change. What's important to understand is that there is some very good infrastructure within first nation communities. There are programs that are very well established, mature, if you will. One I think of is health centres. This is a mechanism that delivers, in some cases, primary health care right within the first nation community, with nursing stations, visiting doctors, or a doctor who may come for scheduled visits. They also have community health representatives and, in some cases, community health nurses, who may or may not be from the community, but generally, it's a specialized care they conduct at the community level.

I think building on these types of infrastructure would be most helpful. We've experienced, over the past 10 years, a shift in the way these programs are operated at the community level, the major shift having to do with the transfer of who operates the particular program at the community level, who has the authority to make decisions. We've seen some success with that, we've also seen some problems.

We do need to see some greater investments in things like injury prevention and helping families with children. As I mentioned, there are parts of the country, and I know Quebec, with other types of benefits delivered to families who have children with disabilities that are meant for them, but routinely, these programs are delivered through an income-based formula. In other words, you have to prove a basis of income in order to be eligible, the national child benefit being one example.

So in a sense, there are some wonderful initiatives out there to help Canada's children, but the point is that they're not reaching first nations children.

The Co-Chair (Mr. John Godfrey): We can have a brief follow-up down the line.

Dr. Rose-Alma McDonald: When I was doing the early childhood development paper, we did recommend that there be better coordination of services. I think, as Wendall says, we do have some programs in the community that we could build on and we could better coordinate, so that the government departments also talk to each other and there isn't an overlap of these silos, as Dr. Bennett mentioned at the beginning. We proposed a circle framework, whereby, if you go to a one-stop window and say, I need this service, that one-stop window can say, okay, you go here, you go there, whatever, rather than getting sent to all these different places.

And then the funds can be given to us in such a way that we have more control over them. One of the other problems we have, again in regard to education, is that the federal government gives us dollars, but limits how we can spend them, and we aren't able to do more culturally specific things.

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The Co-Chair (Mr. John Godfrey): I would note for our own purposes that the specific ideas of a kind of centre or platform using perhaps the health centre as a place to begin the whole notion of coordination, both on the ground and for backup here, are themes we are very much pursuing, at least on our side of the fence.

Do you have any compelling additions to this, Joanne or Michael?

Ms. Joanne Francis: From the example of Akwesasne, not all of our community members will go to a health centre, because of their traditional philosophy and beliefs. They will still go to the traditional healers and medicine people in the community. With that in mind, we've acted through our delivery of mental health services. There is the example I gave earlier, which is the most alarming I've come across, but a frequent occurrence, of misdiagnosis and over-medicating. So what we've done is bring in the best of western medicine and traditional medicine and create options for our community members, so that they have a choice. And within that choice, they have the option to go for western medicine, but also use traditional medicine, and then come back and forth between them, depending on their needs and the severity of what they are presenting with.

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

Prof. Michael Prince: It's a very good question: where can we start in the short term? There's so much that will go on and is going on within aboriginal communities on revitalizing traditional cultures, healing, and capacity building. For a House of Commons committee, I think what can be done in the short term is to look at the federal departments you've had appear before you and keep pushing them on getting an agreed definition of disability across programs and services, agreeing on some comparable indicators or measures of performance outcomes, and then holding the deputies of those four or five or six departments accountable to you every year.

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

With your collective permission, I would propose that we extend until 5:15, at which point a bell will begin to ring. At 5:30 there will be a vote. Is this agreeable?

Some hon. members: Agreed.

The Co-Chair (Mr. John Godfrey): We don't want to force people to sprint to the vote. We will try to balance the time and the vote and our needs.

Ms. Lill.

Ms. Wendy Lill: Thank you very much. I really want to thank you for coming here today.

I've heard over and over from different people a sense of fatigue, discouragement, and sadness. There is a sadness, because, underlying all the material you're putting forward, I know there are faces and names and stories of children you're dealing with. I think it's a huge tribute that you continue to have the tolerance and the patience to come before committees like this again and again over the years, knowing the answers are all out there. They've been put out there over and over, and have not been acted upon. I do believe people in this room care about these issues, and we have to try again to get them out there and have some of those short-term, long-term, middle-term solutions acted upon.

As for the short-term ones, I think we're all hearing very clearly that there have not been any dedicated dollars put into an aboriginal early childhood development program. Clearly, that needs to happen. Also, there's the issue of an expanded head start program. Those seem like two reasonable things to say we need in the upcoming federal budget. We've just got to see them.

As for the long-term strategy, though, you were looking at profound poverty and social and economic devastation in your communities. There are no band-aids for that. It has to be a major economic and social restructuring. The money and the commitment and the policies have to be there for your communities to build and heal. The work has to happen in your communities. You have to make the decisions on how that happens.

Let's just be honest about that. That's the big picture. You talk about pre-existing disabilities and preventable disabilities. This is a concept that is mind-boggling. There are so many disabilities that come from the harshness, conflict, and violence that are built into your communities, They shouldn't be, and nobody wants them there. That's an issue we have to really come to terms with. We can't just simply talk about patchwork solutions.

That's just a bit of a monologue, but I'd like you to top up that monologue with some very specific short-term.... If you want to reiterate what I've just heard, that's good. That gets on the record one more time. If there are any further comments you want to make, fine. We're hearing some very important material here, which I think can be condensed and fed right back to this government and the Minister of Finance for the purposes of the upcoming budget.

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Mr. Wendall Nicholas: Thank you for your question and your comments.

We're probably not going to see success within our lifetime, to be honest. That's a realistic feeling I have. But I know the work that's going on in Akwesasne, as an example, is an amazing step forward from where we were just 10 years ago, even 5 years ago, even 2 years ago.

A lot of this has to do with jurisdiction. It's at the heart of all this. There are a number of issues that are unresolved within this amazing relationship between first nations people and the rest of Canada and everyone else. Unless we can adequately move to resolve what these differences are, I don't know how we're going to press a button and say, this is our solution, this is our remedy.

The Constitution, in section 35, recognizes and affirms our rights. It doesn't define the rights. Canada didn't put a tray on the table and say, these are your rights. Those rights are what we, as individual first nations people, have inside, and so those children we talk about also have those rights. They have that relationship as well.

I don't think, at present, there is a serious enough need for this country to want to resolve and to start understanding what this relationship is all about. All of what we've said in coming to RCAP and this committee and with Dr. Halliday a number of years ago has been ignored. The committee even came to Akwesasne. So we're in a very difficult situation, and our children are most affected. I think we will do our best to find some remedies as we can. But it's difficult for me to differentiate short-term and long-term change. It's tremendously hard to do that.

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The Co-Chair (Mr. John Godfrey): In the interests of parliamentary equity, if you can hold and perhaps incorporate anything you might have wanted to say about that, I will go to Mr. Tonks.

Mr. Alan Tonks (York South--Weston, Lib.): Thank you very much, Mr. Chairman. Thank you to the deputations for being here today.

It shouldn't come as a surprise that in a vulnerable community where fetal alcohol effect and syndrome are prevalent, where there are high levels of unemployment and poverty, there will be child abuse, there will be a whole host of problems associated with those factors, whether it's among our first nations people, Métis, or other communities. The question is, what is the strategy to deal with it?

Mr. Prince, you have outlined a sort of clinical analysis. You have your analysis of the problems, and here is the prognosis for action. Similarly, Ms. Francis, you have indicated the same sort of approach. You talked about this focus group that is going to present these issues in a holistic way. When we talk about holistic approaches to community-based capacity building and so on, it has worked, where we have had indicators and measurements, where we have said to a host community, define the nature of these issues and give us the suggested tools you need to deal with it. It should be no different with the first nations community.

I appreciate, Mr. Nicholas, that you've mentioned RCAP. The royal commission talked about first nations governance issues. They're very difficult. They're going to become extremely political in a very highly charged environment. I would like to think we can look at capacity building, as the model that has been successful in other situations, and stay outside those for the moment. If you could design this integrated and holistic model that would do all the things you need to do, and we could take that and make it a recommendation, what would be the components of it? Just tell us the kinds of instruments you need and what support we could give you.

The Co-Chair (Mr. John Godfrey): This is known as the king-for-a-day question--or prince-for-a-day.

Prof. Michael Prince: Every day.

Dr. Rose-Alma McDonald: You can't escape the issue of first nations jurisdiction. Any of the services that are provided have to be driven by first nations. We can't get beyond that issue of prescribed, proscribed things that are given to us: here's the solution for you. We did a lot of research on why government programs don't work. One of the reasons is that they're designed from a non-aboriginal point of view. They have to be designed with our world view at the centre and have the services go from that. We talked about having the family as the centre of a lot of the remediation programs and services.

But the government also needs to keep in mind that any component of any program or service delivery has to have.... I'm sure there are a lot of academics in this room who have heard of Maslow's hierarchy of needs. At the very basic level, you have your physiological needs, the food, the water, the housing. Then you have your safety needs, security and stability. Then you have love and belonging, affiliation, acceptance and esteem, success and status and self-actualization. First nations communities haven't even gone beyond the very bottom of the hierarchy of needs. So when you're doing programs from the government level, how can we make sure our kids have food? How do we make sure there are not ten persons per household? How can we make sure there's infrastructure, so that they have water to take a bath? Those very basic things have to be included in any program that's designed, and then all the other things will flow from there.

It also has to be done in collaboration and consultation with us. It can't be just given to us: here's a nice program for you, that should make your problems better. No. It needs to be done where we sit together and we say what would best work for this community. Akwesasne is different from Moose Factory, Moose Factory is different from Nunavut, and every community is going to have a different solution. So I think it really has to be something where we work together as partners, community-based and driven by first nations.

» (1705)

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

Mr. Prince for a day.

Prof. Michael Prince: Again, I would start with that, as well as recognizing and respecting the diversity of indigenous peoples in this country, the Métis, the Inuit, the Innu, the first nations, the status Indians and the non-status. That's a political reality, it's also a constitutional reality. So being holistic means learning how to juggle at least five balls in the air at once with some finesse and some respect.

It is a politically charged environment. I come from a province where that is getting warmer every day. But I think also, perversely, there's an opportunity, because of that heat, to do good work here on the day-to-day needs. When they fight ferociously on the treaty issues in British Columbia, they recognize the pressing urban and reserve needs in that province. Things like head start, the friendship centres, the prenatal nutrition, and early childhood, in a way, span the partisan issues. They're non-partisan or they're multi-partisan.

It is a seven generation perspective, and if this is right, this is going to take a very long time. So patience is required, but we've got to act. All the treaties and all the self-determination don't amount to a hill of beans when diabetes is ravaging your community or fetal alcohol syndrome.

The Co-Chair (Ms. Carolyn Bennett): Are there any communities across the country where you would see best practices?

The Co-Chair (Mr. John Godfrey): Are you talking about kids with disability?

The Co-Chair (Ms. Carolyn Bennett): All of these things, yes, a holistic approach, following what Alma was saying.

Prof. Michael Prince: With the Nisga'a in British Columbia, it took them 25 years to negotiate a treaty with the two governments, but they've got a school board, they've got a hospital, they've got a health and social services system. They've got 6,000 people, there's a critical mass there. A lot of the bands and small indigenous communities are going to have to learn how to cooperate or rebuild into their nations. That's part of the RCAP vision. There may be 600-odd bands, but there are only about 50 nations in the country. We've got to make sure our programs, Dr. Bennett, do not perpetuate the fragmentation of traditional nations and say this has to be done at a band level or a tribal council. We've got to encourage the economies of scale and the rebuilding and revitalization of cultures and traditions.

So I think you'll find some best practices in very small communities, but also some of the larger ones. I know western Canada better than the centre or east.

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

Ms. Joanne Francis: There are best practices, as Michael said, in the small communities, individual communities, and, I have to say, Akwesasne. We've been doing a lot, and we've been persistent and tenacious in keeping things going. With or without funding, we've been managing to do some revamping within the structure of our health and social development program.

In addition, I would like to say to the government, keep in mind--Dr. Bennett, you mentioned earlier the silos of housing and justice and all those--disability cuts across all that in infrastructure. I don't think that is something that's remembered or recalled, because it's, “Where does that fit?” When I was before chief in council and pushing the issue of disability, in the instance of modern nation-building, the big discussion was about where it finishes. Disability is horizontal, whereas everything else is vertical. So it's a dilemma. It's something new, but if minds were open to it, I think it's definitely something that could work.

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

Mr. Tony Tirabassi (Niagara Centre, Lib.): I would like to add my thanks to you for taking the time to come before the committee.

The subcommittee on children and youth at risk--this has been my first year on this committee--has heard from many witnesses, and they've described a number of programs. There seem to be a number of policies and initiatives out there, and they cross many government departments. Nonetheless, when it comes right down to it, it seems to be a patchwork. I believe that was expressed earlier. Because of that, inevitably, many of the families and children fall through what we'd like to think of as cracks, but I'm starting to realize they're not cracks, they're craters.

But there are some initiatives. To give me some idea of the impact they have or how good they are or aren't, I just would like to refer to the fact that in budget 2001 the federal government announced $185 million over two years for aboriginal children in various programs. What does that mean? What type of impact does that have on what your needs are?

Mr. Wendall Nicholas: Are you talking about that overall package of money, including special needs education and all those other components ?

Mr. Tony Tirabassi: Correct.

Mr. Wendall Nicholas: I think it is an honestly good start, but do we actually know how much of an impact it's going to have if we don't have the numbers for comparison? Canada has, for the past number of years, conducted a longitudinal survey of its children, and aboriginal children were not part of this examination. It presents a complex problem. When, in 1998, first nations and Inuit decided they wanted to conduct health and social research within their own jurisdictions, they didn't initially ask questions about children. In the next round we're hoping we can.

It's difficult to say what the fuel was that brought us to that point with that amount of money. We, of course, complained. We complained that the national children's agenda seemed to move along without focusing in on aboriginal children. We complained about ECD, as it came out, that the package of money, $2.2 million over the number of years, didn't come near to meeting the needs of first nations children, because it was an agreement between the provinces and the federal government.

It is still difficult for me to say at this point exactly where that money is headed and how much of an impact it's going to have. I think time will tell the story there. There is so much needs to be done, but I don't want to be totally negative about it. I want to say it is a good start.

Dr. Rose-Alma McDonald: I want to make a couple of additional comments. It sounds like a lot of money when you say $185 million, but you divide it, for example, between the five aboriginal groups, then you have 663 first nations, and you divide that by population. That $185 million is not a lot of money when you start dividing it out by our jurisdictions, by our populations,by our communities. That's part of the problem: how do you get that money out there?

One of the other numerous hats I'm wearing is that of co-author of the HRDC report on disability. I am writing the aboriginal part of that. One of the things we're struggling with, actually in the last few days, is this. The federal government have accessibility, they have accountability, they have disability supports, they have education and training, they have labour markets, all these five categories we've identified as indicators for success for disability for HRDC. When we tried to quantify that for the aboriginal population, I was the one responsible for conducting the consultations with the five aboriginal groups. The Inuit want to say, of this money, this much of is ours. When they look at the indicators, they want to say, how many of the Inuit in Nunavut or wherever have been affected by this money? First nations are the same way, Métis are the same way, non-status, off-reserve are the same way, and so are women. When you take $185 million and divide it by five aboriginal groups, then by 633, it's not a lot of money.

We are making the attempts to have indicators of success. My colleague Mr. Prince has mentioned that. But we don't even have the statistics to quantify it. We had meetings with Statistics Canada yesterday to say, how many people have a need for disability support, and how many of them are receiving it? The data aren't even collected that way. So it's very difficult for us to say to the government, you haven't met your requirements to us, because the government and everybody else don't even collect the data that way. So that's another thing that we have to do.

When we did the consultations, through HRDC, with the five aboriginal groups, the only way we were able to get them to participate in the consultations was by taking all the recommendations from all the standing committees of the last 20 years and saying, here's what the government has said it was going to do: what's required to address this issue, what are the outcomes, what are the indicators of success, what are the timeframes, who are the stakeholders? HRDC has that plan. It's a plan, probably about 50 pages thick, that comes from the five aboriginal groups, a work plan for the federal government, with all the indicators and everything.

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The Co-Chair (Ms. Carolyn Bennett): Last year, maybe even the year before, we were impressed by severely disabled children who cannot be maintained on reserve, so their families have no choice but to move off reserve. Do we have the data on how many families that would apply to? It seems those kinds of numbers would be very helpful in explaining what's not happening. If you have a severely disabled child, you have to go to the city, and then you're treated off reserve, and you lose all your supports and services.

On the Nunavut side, they do have some sort of self-government that allows them to map every single disabled special needs child and adult in the territory, but even there--and I've been there every summer since I was elected--is it reasonable that they should have to apply to crime prevention for this little bit of FAS/FAE money and to prenatal nutrition for this little bit of money? They don't even know they qualify. Hamlet by hamlet, they don't know they could have been getting crime prevention money or prenatal nutrition money. It does seem incoherent.

I think Tony's point is, how do you make that $185 million work in such a way that we could show outcomes? What would we measure if we wanted to show they were getting results among the five aboriginal groups?

Mr. Wendall Nicholas: I just wanted to leave you with the point that ultimately, if a child is born with a disability in a community, that child is going to end up leaving the community, if that helps with understanding the impact. It's that, or the child and family remain in isolation without any support. That is the reality, Dr. Bennett.

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Ms. Joanne Francis: For a little insight into that $185 million, years ago the Mulroney government gave $158 million towards disability. What ended up trickling down to Akwesasne, which at that time had a population of 9,000 people, was $2,777.49. What can you do with that in a community of that size? So as it trickles down from the presentation to the community, it becomes very little. That was what we received for five years. It was not enough to do very much, let alone support a child, when, as Dr. McDonald has said, it takes $1.6 million or something to raise a child with disabilities through a lifetime.

The Co-Chair (Mr. John Godfrey): I just want to ask this question, and then we'll move to Dr. Prince. One of the things we have heard on the kids at risk side is that one of the strategies for getting help for a kid is putting them up for care. Is this a strategy that also applies to children with disabilities? Is that actually happening?

Ms. Joanne Francis: Actually, it has been common, because our services are so haphazard. We do receive certain funds, as with the early childhood initiative, but they come and they go. So parents don't know from year to year what is in place and what is not. They can say they had it for their second child, but it's not there for their fourth child. Those kinds of hazards happen. This has been a common theme.

As a client advocate, I actually get parents who seek funds or assistance at any level. They end up going to the child welfare program, because the image is that they have a lot of money. They go and find out what they have, how they can help them, and they say, if you want to put your child into care, we can assist with this. What kind of recommendation is that to a family where there is no issue of neglect or child abuse? It's a means of receiving adequate services for their child to remain in the community. This is an action they may have to consider at some point. The other option is to institutionalize and remove from the community altogether. Those are some of the horrors we face.

The Co-Chair (Mr. John Godfrey): Dr. Prince.

Prof. Michael Prince: I'm just reading of the various murders and suicides in families we have seen both in British Columbia and elsewhere in this country over the last year or two, and the big debates carried on in the Globe and Mail and other newspapers, French and English. The incentives are to declare yourself unfit as a parent and to have your loved one institutionalized, because you'll get support there and you'll get miserly, from the Dickens age of nineteenth-century England support for doing care at home. We just have these upside down values on dealing with not just children, but adults with disabilities as well. It's a shock.

I'm conscious of your time.

The Co-Chair (Mr. John Godfrey): I'm hurrying you along.

Prof. Michael Prince: A couple of other thoughts on best practices came to my mind, if you're wanting to make notes. One is the Mi'kmaq in Nova Scotia. For child and family services, up in the Yukon you have the Champagne and Aishihik. There are 14 first nations up there who have signed comprehensive land claims agreements with the Government of Canada. They all signed separate agreements, and now they're all moving towards building capacity by cooperating with each other, rather than re-inventing the wheel 14 times with 14 small communities. On Vancouver Island, out near Port Alberni, you have the Nuu-chah-nulth tribal council, which is again, like the Nisga'a, a fairly vital and vibrant culture still, an indigenous community with a very active tribal council and confederacy. So where you find still a mature political system and culture, you can find some of these good practices.

The aboriginal people survey was last done in 1991, we've just had the one done in 2001. That'll be the baseline for the data for the next ten years. What troubled a lot of advocates through the 1990s was that we were using data that were increasingly getting older to make arguments or analyses. The 1996 one was cancelled, but the 2001 has been done. I think that'll be very important.

I know the subcommittee on children and youth has been talking about the idea of a commissioner for children. I know Minister Stewart is going to be visited by the Easter Seal Society in the not-too-distant future about a commissioner for disability. It's trying to find the common ground. You want to help children and youth at risk, you want to help people with disabilities, including children with disabilities. Help to bridge that, so you don't create another silo, saying, politically, there's enough advocacy support out there for a commissioner for children, so we'll go for that, and we'll squeeze a little bit of a disability file into that commissioner's mandate. I don't think the disability side has got the strength that the children's side has got to make the case. For God's sake, don't produce more silos. If you're going to go with a commissioner or a parliamentary officer, try to bridge the two worlds. That's why I think this is such a wonderful opportunity, where your two subcommittees do work together, so that we don't unwittingly recreate these organizational barriers.

Thank you, sir.

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The Co-Chair (Mr. John Godfrey): On that note, let me just make the following thanks.

First, on behalf of the children and youth at risk committee, I want to thank Julie Mackenzie, our researcher, who has abandoned ship, leaving us to our fate, sinking like I don't know what--the metaphors are going wild here. Anyway, we are going deeply to miss Julie for all her work. We wish her well in her next assignment. I just wanted to thank you very much on behalf of all of us for a job well done. We hope to stay in touch with you.

Second, thanks to the witnesses for coming, in your case, Dr. Prince, from a great distance, from not so far down the road, so to speak, for the others. Nicholas Wendall lives in the same neighbourhood I do. Thank you very much for helping us on this. I think it's been a very useful meeting. You've given us some direction and some information that we will, severally and together, incorporate in our reports and our work.

As the bell chimes us out, we thank everybody for their participation.

[Translation]

The meeting is adjourned.