Proceedings of the Standing Senate Committee on
Human Rights
Issue 8 - Evidence - Morning meeting
EDMONTON, Wednesday, September 20, 2006
The Standing Senate Committee on Human Rights met this day at 9 a.m. to examine and report upon Canada's international obligations in regards to the rights and freedoms of children.
Senator A. Raynell Andreychuk (Chairman) in the chair.
[English]
The Chairman: Good morning, ladies and gentlemen. We are the Senate Standing Committee on Human Rights. We are here in Edmonton to examine and report upon Canada's international obligations in regards to the rights and freedoms of children. We have been travelling across Canada and receiving witnesses in Ottawa to discuss Canada's compliance both at the provincial and the federal level, although we are targeting more the federal responsibilities for the Convention on the Rights of the Child. Obviously, we are talking about children in the broader context and to put the convention in proper perspective.
We are very pleased today to have with us Yvette Ludwig and Gail Wilkinson, both from the Families for Effective Autism Treatment.
Yvette Ludwig, Representative, Families for Effective Autism Treatment (FEAT): Good morning. I am the mother of three children, one of whom is a son with autism. Because of the vulnerabilities of children with autism and the unique demands families face in protecting and ensuring opportunities for our children to reach their potential, I have joined with other families in forming a parent organization dedicated to helping children. This organization is Families for Effective Autism Treatment.
In addition to my own experience, my involvement in this parent organization has given me the opportunity to meet with hundreds of other families who are also negotiating their way through Canadian systems as they try to help their children. Today I would like to be their voice and to share some of their experiences as well.
Canada has an obligation beyond the basic physical necessities of food, water and shelter. The convention talks about ensuring survival and development of children. There needs to be an implementation of commitment to maximize and to optimize opportunities in physical as well as emotional, mental, spiritual, cultural, and community aspects of society.
It is very easy for us to get wooed by the rhetoric around protecting and supporting the vulnerable in our society, and it would be considered a no-brainer, for lack of a better word, that children, and especially those with disabilities, need protection and support in order to develop to their highest potential and to achieve meaningful participation and fulfillment in society.
Yet in practice, the best interests of children are not the primary focus or concern. Although autism is a medical diagnosis, treatment is largely unavailable or inaccessible. The goal should be to develop the child's abilities to prepare for active participation in society.
In Alberta we have huge issues around assessment and access to resources. Those issues are shared across the country. We recognize that and we connect with families across the continent.
It can take years for families to get appropriate assessment. It can be a very difficult pathway to negotiate simply to find the right people to see, the right lineups to get into.
There are not enough scientifically validated programs, and the programs that are available, whether scientifically validated or not, have long waiting lists. Often, therefore, families have to carry the burden of the financial responsibility for services and treatments. It is not uncommon to have families rest the financial weight within the mortgage of their home in order to support the extra costs to get the vital and timely services that are needed.
Access to programs is inconsistent provincially as well as nationally, often leading families to uproot. Many Albertan families will leave their communities in order to access services that are offered in another region simply because that is how governments have organized the services. Some families will totally leave their communities, transferring their children to different schools, setting up new homes and seeking work closer to accessible resources. Other families will live separated. Sometimes it is not feasible to move the whole family but the child can stay with a relative who lives in a region that offers programming.
It is unconscionable that families should have to consider being separated in order to have their children get the services and resources that they need.
We often feel that we as families are not heard. Many of our children are capable of sharing their ideas and opinions and there really is not any better advocate for a child than a parent who is truly and sincerely trying to see that the child will be able to meet his or her fullest potential. There are no hidden agendas within a family, and a family's voice really needs to be recognized in advocating for a child.
It has been made clear to us in many of the services we try to access as families that our voice is not always welcome. For example, within the Ministry of Children's Services, a review panel openly acknowledged that families are allowed to be present only for a small portion of the proceedings regarding accessing programming, and that was only with great pressure exerted on them, and children are not welcome to attend.
Within the educational system, there are families with children who present strongly academically and who, although they have deficits in other areas, meet criteria for certain programs that are offered to typical students. However, often those children do not have the opportunity to express how this affects them or how important accessing that regular program is for them.
Frequently our children are seen and treated as if they carry a diagnosis before any capabilities they have. We feel that often children with autism are perceived more as game pieces, not really part of the process.
Another huge concern is that children with autism are vulnerable to abuse and neglect. They are misunderstood and they appear different. Their needs are often overlooked or ignored. Without appropriate treatments and supports, children with autism are easily fall prey to bullying and marginalization.
Unfortunately, because there are difficulties around accessing appropriate treatment and programming for children, a lot of strain is put on families who are then ill-equipped to better support the child in the community, and we end up with a very negative sort of a downward spiral. The answer is very simple. If we can provide these children with appropriate programming and the supports that they need, we will foster children who actually reach their potential, are able to live more typical lives, and increase their participation in the regular community we all want to enjoy.
Families are stronger if they do not have the burden of dealing with children who have not been able to access the supports and services they need to reach their potential. We can easily turn this around so that families are strengthened and individuals are able to reach their full potential and be participating members of society.
Unfortunately, there is a tendency to want to warehouse or group children with disabilities together. It is much easier to deal with them if you pull them all into a segregated setting, and it is less demanding on typical environments. For instance, schools will often approach families, saying, "We do not know if your child's needs are best suited to this regular classroom environment within the community," and perhaps they would be directed into a segregated site. That is not a positive move for our children. We want them to have a typical experience; we want them to be around typical peers and have the same opportunities that their typical peers have.
Why should my child with autism have to be in a situation where he associates only with children who also carry the title of the disability when he could really enjoy a much fuller, richer, more meaningful life having the opportunity to co-exist with typical children in a regular community?
Families find themselves quite exhausted by having to negotiate and fight constantly for all the different services and supports they can access. It is a huge drain on a family, especially when there might be a number of children, to have to exert so many resources trying to make sure that one child has the same opportunities as the others.
I recognize that Alberta is sometimes held as a standard to which other provinces should aspire. There is an idea right now that things are very cushy here, and a tremendous number of people are moving from elsewhere in Canada to this province because they feel that here they are going to be able to access services that they cannot access at home.
Sadly, that might be the truth. People would actually uproot their families and move here to receive scanty and minimal services as compared perhaps to no services offered in their areas. If Alberta is the ideal, then we really need to take a hard look at what we are doing to our children, especially children with disabilities.
Alberta has a tremendous problem with respect to the availability of proper expertise for diagnosis. People can wait long periods of time before actually receiving a diagnosis, which they need in order to be able to understand the situation and to access appropriate programming.
Once they do have the diagnosis, actually finding high quality programs is extremely difficult. We have a much stronger tendency toward providing sort of respite or stress relief or glorified babysitting programs than we do providing scientifically validated programs that will make a difference in the long-term outcome of children. In addition to that, it is patchy everywhere you go. There are the haves and the have-nots. Typically, the children whose parents are the stronger advocates will end up accessing better programming and opportunities than those whose parents do not advocate strongly.
I have a hard time sleeping at night knowing that that is the reality here.
I would like to pass the opportunity to speak with you today over to Gail Wilkinson, who is the president of FEAT.
Gail Wilkinson, President, Families for Effecitve Autism Treatment (FEAT): Good morning, senators. My oldest son has autism. He is 15 years old. My comments this morning are brief but I thought they might help fill in the gaps, so to speak.
I want to mention briefly what autism is, just in case anybody has questions. Autism is often called autism spectrum disorder because it actually is a spectrum of symptoms. The current thinking about autism is that it is a disorder in how the brain processes information.
Causes of autism are yet to be determined. There has been a tremendous amount of research but there is still no answer to that.
Children with autism have delays or difficulties with social interactions, with speech and communication. They tend to have rigid or repetitive routines or behaviours or interests. They have difficulties responding to information from their senses of feeling, touch, hearing, and site. They have considerable difficulty in developing and maintaining relationships.
An underlying process in the brain affects so many aspects of the lives of these kids. In a functional sense, these kids have difficulties within the education system. They have difficulties functioning within a typical family system. They have difficulties functioning within the community as a whole.
The latest prevalence data around autism indicates that one child in 166 children has autism, or for every 10,000 births, 60 children will have autism. It is the most common neurologic disorder in children now. That means it is more common than Down syndrome. It is more common than cerebral palsy. When we are talking about this group of kids and about how we can meet their needs, we are talking about huge numbers of kids in Canada.
That is a snapshot about autism. I want to speak briefly as well about FEAT Alberta. Families for Effective Autism Treatment is a group of parent and family volunteers who have come together throughout Alberta, both in both rural and urban areas. Our primary purposes are to educate and to advocate for effective treatment for children with autism. We educate and we assist with advocacy efforts of individual groups and individual families in their efforts to get what their children need.
Effective treatment means early treatment; that has been scientifically validated. Early does not necessarily mean at an early age, but as soon as possible after a child is diagnosed. Effective treatment is also intensive and is individualized to meet the needs of the particular child. There is no one program fits all.
Over the past years, FEAT Alberta has been dealing with issues related to access to diagnostic screening, access to assessment by trained professionals, access to treatment programs, access to appropriate educational programs, access to necessary family and individual supports for these kids, and inclusion in the educational setting and in community settings. These are the issues our families face on a daily basis.
I noted in your report from 2005 that you had already identified that there was no national standard for services and treatment programs for children with autism. We still do not have that national standard, and having a standard is even more critical today than it was then.
The quality of services and treatment in Alberta is deteriorating. In Edmonton and Northern Alberta, one company provides scientifically validated intervention for children. All of the other government-approved providers do not utilize treatment methodologies that are validated in the scientific literature.
Our point is that having a national standard is absolutely critical.
The other point in your report was the inconsistency between the rhetoric of government and what is actually happening at the front line for kids. While the rhetoric seems to be getting better, on the front line, things are getting worse. There is a bigger gap between what we are hearing and what is actually happening for our children.
Thank you for having us here.
Senator Munson: As a former reporter, I find it a shame that there is absolutely no media here to hear your story. If this committee were discussing national defence and security or perhaps energy the room would be packed.
I launched an inquiry in the Senate and it was moved off to a social affairs committee on autism. My idea or idea shared with others is a national autism spectrum disorder strategy. I have talked extensively about it in the Senate and on the steps with families and children. We have friends who have children with autism. I am very sensitive to the issue. I think all of us here are very sensitive to this issue.
I could see the anxiety of the parents in my home province of New Brunswick this summer. I met a gentleman, now separated because the stress was so difficult, whose son was playing on the beach. I could see how hard he has to work as a teacher and how hard he has to work with his young boy.
When we travel across the country we hear people in Atlantic Canada and Ontario saying they are on their way to Alberta because there is not only oil there but also there is real help, there is money. Those people are living in a myth or a dream, and I think you have just given us a reality check: perhaps not all is paved with oil or gold here.
How do we address the rhetoric and the problem of the front lines getting worse in this country? To me there are no provincial borders, yet we hear that this is a provincial issue.
I think this government and perhaps the past government and those of us who are really pursuing this whole ideal have to come up with some kind of strategy. Perhaps there could be a pot of money from Health Canada directed specifically through provincial programs for autism. I do not know how that would work, but we have got to bust down that provincial door, because, as you say, it is getting worse.
I would like to get your views on those thoughts.
Ms. Wilkinson: I agree there needs to be a national strategy. I also agree that Alberta is viewed as the pot of gold. The provincial government has severely compartmentalized how it provides services to children with disabilities. The Ministry of Children's Services has a program called FSCD, Family Support for Children with Disabilities.
Children's Services came out with new legislation several years ago. It is full of wonderful rhetoric about meeting the needs of children, addressing individual needs, having different levels of services based on need. However, the reality of the implementation of the legislation is that children with autism do not get any specialized services unless they are severely, severely disabled. Thanks to this legislation, the bulk of the children with autism are pretty much denied the type of scientifically validated treatment they need.
When children are severely enough disabled to qualify for programs, they receive probably a quarter of what my child received for intervention five years ago. Intensive individualized intervention is not what is happening and not what is being funded. The implementation of the legislations is contrary to the actual sprit of the rhetoric in the legislation.
How can we address these issues nationally? I think we have to break down the barriers compartmentalizing this group of children. Those barriers prevent them from being able to access health care per se.
My child with autism cannot access speech pathology or occupational therapy through the normal health care system because of his diagnosis of autism. He has to get those services through Children's Services, and if his autism in not severe enough, he gets nothing.
Education has divested itself of its responsibility. We have great rhetoric within education as well, suggesting that children will be included and will have programs that meet their needs. In actuality, the system encourages parents either to segregate their children or to home school. There has been a proliferation of segregated autism programs all the way through high school. Parents can choose to put their kids in little classrooms in the school basement where the kids are not taught the curriculum or to take their children totally out of the system and add to their family burden. We are really marginalizing the involvement of those children and families in society.
That is the situation in Alberta. I think those barriers have to come down. In any national strategy, you have to find some way to break down how things are compartmentalized. Kids with autism do not follow the same path as typical children.
Senator Munson: It is important that we hear about the reality in Alberta, because on the steps of Parliament Hill and in dozens and dozens of e-mails, we hear from people who prepared to relocate to Alberta because they think they will receive $50,000 a year until their child is 18 years old and intensive behavioural treatment all the way through. It does not sound like that is what is happening here. Instead, you have silos, and all governments should get on the ball quickly to address this serious issue.
You said one in 160 children has autism, right? Three years ago, it was one in 200 children. Before, it was one in 10,000 children. Where do we have to go? Does it have to be half the births in this country before somebody wakes up?
I am very frustrated with this whole issue. I know that there are other serious disability issues with children, but I am very close to this one.
Ms. Wilkinson: Let me respond with one experience from my son. My son is 15 years old. He has had intensive intervention for the past nine years. In order to get that for my son, I had to sue the government once, and I had to go through numerous appeals with Children's Services and with education. I had to have a review of his education by the minister. Basically, I have had a lawyer on retainer since 1997.
My son does well academically but still has significant disability. He went into high school this year. In Grade 9, he got 90 per cent as a final mark in science and he applied for a science-enhanced high school program. To qualify for the program you had to have an average of 75 per cent in your core subjects and a recommendation from your science teacher. He achieved those criteria for admission. He was turned down because he has autism and because he is disabled.
I had to fight an appeal during the last week of August on the basis of discrimination in order to get him into this high school program. He competed with every other child in Edmonton who wanted to apply for that program, but he was turned down because of his disability.
Not only the silos, but also the attitudes that underlie those silos have to be dealt with. Those attitudes are a significant issue, especially in Alberta.
Ms. Ludwig: I think it would be useful to have a brief history of why Alberta all of a sudden had programming available when other places did not, why we were the have province when there were have-nots.
It is important to recognize that it came from a few families who were not willing to accept no services. Some used legal means to try to push the government, and then some recognized that under the Ministry of Children's Services there was an appeal process that worked.
When they applied for funding for exceptional services, because there was nothing regarding appropriate education for their children in the province, the appeal system was caught off guard and did have to acknowledge that the facts spoke for themselves, that these children needed the services and that there were scientifically validated services available that had demonstrated effectiveness.
Once those first few families got through, of course, the word began to spread, "This is how you access services. Have your documentation in order and then you can follow the same pattern." It did not take long before efforts were made to shut that appeal process down.
A group of families started to get through and be able to access programming, and then pretty soon the rules started to change. All of a sudden there was an age restriction. Yes, you could get services as long as you accessed them before your child's seventh birthday. A week after your child's seventh birthday you did not qualify.
The ministries got together; each minister was happy to say he or she recognized the need of the families, but the message was, "It is not our problem; you have to go to another ministry."
In terms of your question about what works, the first thing that we know works is having an opportunity or a venue for families to have a voice. Having some kind of a process where there can be appeal or a challenge to a current rule or system is critical; otherwise, families are shut down at the front lines and word never gets out and you do not hear about the individual cases.
The other thing is there needs to be a motivation. There needs to be something that encourages government to truly seek out what they can to meet the best interests of the children.
We can take a look at what has already worked. First of all, we need to have a process that families can challenge rules when they are not fair, when they are not meeting the needs. We need to have a process that is accessible to families.
We need to have a standard so that families, the consumers of services, can hold governments accountable for what they are doing and can challenge if governments are not fulfilling their obligations. We must have standards and there needs to be some kind of overseeing body that holds everybody accountable.
I know that every person I have had to deal with regarding my son's programming needs in their heart would say to me, "I truly understand what you are going through and wish you the best, but my hands are tied." We just need to find a way to untie those hands.
One thing that jumps out when Ms. Wilkinson and I are both speaking is that you are looking at families who have been advocating for a long time. Our children have done very well. If anything, we are examples of the potential that our children had. Trust me, when our children were diagnosed, nobody expected them to have the capacity that they have, and how well they have done clearly demonstrates that with services, in our case hard fought for and patchy, our children have potential.
We need to recognize that we are creating individuals who will be active participants in our society. We have to recognize that autism is not a sentence to limited potential. Many children with autism have tremendous potential and we have a responsibility to allow them to reach that potential.
Senator Poy: At what age are children usually diagnosed? Are they diagnosed with autism at birth or can it happen later on?
Ms. Ludwig: A person can be diagnosed at any point in life. Often, especially now as awareness increases, we find that that ostracized homeless person who was previously misunderstood has, in fact, a late-diagnosed condition somewhere along the autism spectrum.
Generally speaking, autism is diagnosed when children begin to demonstrate that they are not meeting certain milestones. Often that is around 18 months of age. We expect kids to reach certain milestones, like their first word, social interaction, being able to follow instruction. When those developmental milestones are not being met, that is typically the red flag that leads people to seek medical advice. If they happen to bring their child to a physician who has an understanding of this disability, they can be directed in the appropriate direction. If they do not, they end up being told, "You're child is just delayed; give them more time," and time is lost.
In many ways it is luck whether or not kids and families end up in the hands of professionals who have an understanding of the disorder and who can help them. Largely, diagnosis occurs in the young when milestones are not met.
Senator Poy: Is there a cutoff age for services in Alberta? In some provinces there is a cutoff point.
Ms. Wilkinson: In Alberta there used to be a cutoff at age six. That was challenged in litigation in Calgary a number of years ago, and through that litigation, the judge ordered that the government was responsible until the children reached the age of 18 years.
The government chose not to appeal that court decision, and our understanding from what we have been told by the government is that they accept this jurisdiction now. That being said, their accepting jurisdiction and saying, "We are responsible," does not mean that we can access the services. Again, there is a difference between the rhetoric and the reality.
To return to your question about diagnosis, I want to add that it can take up to two years to access an appropriate health care professional to give your child the label and the documentation you need. Parents know long before they ever get a label that there is a problem with their child. Often parents even know what is wrong with their child, because they have done research and have figured it out. However, to actually get the piece of paper that is required to access services is another issue entirely.
It is very unfortunate that parents have to hang a label on their child like that in order to access services. A delay of two years to be officially diagnosed and then another delay of a year or two before you can access potential services mean that a child who is diagnosed at the age of two might be six years old before they ever start treatment. That is a tragedy itself.
Senator Munson: Almost too late?
Ms. Wilkinson: Actually, treatment can be effective throughout the life span. When children get early and effective treatment, the whole goal is to integrate them with their peers and to catch them up developmentally so that they can progress with other children. The longer you delay treatment, the more catching up you have to do. It is possible.
My child did not start intervention until he was six. As I said, he is now 15. He has got a long way to go, but he has never not met a goal we set for him. His potential is still unlimited.
Senator Poy: You mentioned that your 15-year-old son is doing very well in school. His diagnosis of autism also gave him the stigma that is affecting him now. How does one get over that?
Ms. Wilkinson: My son actually has three diagnoses. He has autism, he has cerebral palsy, and he also has a significant hearing loss requiring that he wear hearing aids. He has three labels.
He has developed enough insight that we are now teaching him about autism, because in order for him to learn to advocate for himself, he must understand what his needs are. He will need help with the things that he has difficulties with until he learns how to do them independently. We figure that part of teaching this 15-year-old kid is to teach him to be able to say, "You know what, I need a hand with that right now."
He feels different than other kids. He is almost obsessed with not looking different than other kids. Often he would rather look foolish than admit that he does not understand or know, just because of his desire to fit in with all the other kids.
He is very motivated in his treatment programs and in learning the things he needs to learn. He will tell you he wants to go to university. He wants to go have an independent life. As he told a group of teachers in the spring, "I do not want to be rich, but I would like to have a comfortable life." That is his goal for himself right now, and we are there to support it.
Senator Poy: You mentioned that he had high marks in science and a good average, yet the stigma of autism prevents him from competing in his high school. In my mind, it should work the other way. Because of his condition, he should be encouraged. I do not understand why it is pulling him back.
Ms. Wilkinson: The general attitude is that accommodating children with differences is maybe just too inconvenient when we can have a nice, young group of bright, energetic, eager children who do not require a lot of varying from middle ground. So there is not that encouragement.
Yes, the stigma of autism does very much cause people to look at him differently.
Ms. Ludwig: Senator Poy, you had asked us a question about whether services are cut off at the age of six. We indicated that that is a policy that has been challenged and been somewhat corrected, but there are other ways to reduce the amount of programming that is available and services that are available. Once the age restriction was overcome, other restrictions developed.
For instance, there are other narrow criteria. Currently the Ministry of Children's Services has a process whereby certain criteria have to be met, and if your child is not severe enough, he or she will not get programming. On the other hand, sometimes if the disability is too severe, then it is thought that the child has no potential, which is unfair and not true. Yet, if the your child has some strength, is sort of middle of the road, where the disability is present but not so severe that it is one of our most heartbreaking examples, then the attitude is that the child is doing pretty darn good for a kid with autism and therefore we should be allocating our services to those who are more severe.
Then there are the children who really have the potential to do incredibly well because their disability is less severe although still prevalent and present and still an obstacle to them reaching their potential; they say those children should be laughing because they are on the upper end of the disability spectrum.
It is often a no-win situation, because regardless of where you fall, you feel like you are punished for either the severity or the lack of severity of the disability. Treatment should be needs based, and you should not have to reach a certain level before you can actually kick in and access programming.
If a child has a lesser need, that is wonderful. That child will probably do extremely well if we provide the services. If a child has a more significant or dramatic need, wonderful. Then our goal for that child will be that they achieve perhaps a level of independence. The goals will be different but the potential for improvement is great, and there should not be that arbitrary decision making about what kind of services or what kind of potential a child might have.
Senator Carstairs: I want to touch on Senator Poy's question. As an educator, I found labelling children a very negative thing. I also am concerned about the potential of labelling things that are not what they might first appear to be.
The flavour of the month ten years ago was dyslexia. The flavour of the month now, I would suggest to you, is autism. I am concerned that children get a label and then never seem to be able to escape the label even long after some of them are fully functioning or should be allowed to function. I'm thinking of your son, Ms. Wilkinson, who can compete successfully against other children. Children should not be put in special categories forever because they once did and still do suffer from something called autism.
Would we do that to the diabetic child? Would we do that to the child who was hard of hearing alone? Would we do that to the child who wore eyeglasses?
How do we address the issue? I was a teacher for 21 years, and my philosophy was to consider first whether something was in the best interest of that child, then in the best interest of all of the other children in that class, and in the best interest of the teacher. Now the thinking seems to be reversed: is something in the best interest of administration, is it in the best interest of the teacher, is it in the best interest of the other children, and then, finally, is it in the best interest of that child?
How do we change the labelling? Do we really have such good diagnostic tools that children who are in fact not autistic are never diagnosed inappropriately?
Do we have the skills yet in the community to provide that diagnosis and then do we have the programming ready to follow once that diagnosis is made?
Ms. Ludwig: I think we can rest somewhat assured that autism is actually a medical diagnosis. Some other disabilities are perhaps less exact, but there are specific, quite rigid items that have to be met before a child qualifies for autism. In fact, it likely happens more often that the doctors are not quite sure whether a child meets the threshold, so they give that child a bit of a watered-down diagnosis, when in the end they will find out that it is autism.
Autism is difficult to diagnose because it is a spectrum disorder. You can have a child who can cite the alphabet at a very early age but who will not keep clothes on and who cannot stand to have any sauce touch his fingers. Sometimes it is challenging in terms of what you see, but autism is medically diagnosed. In general, children are funneled into a limited number of places that will actually diagnose them.
We do not have a problem of over diagnosing and we do not necessarily have a problem of misdiagnosing. Often physicians are quite reluctant to give a child that label.
In terms of how the label might affect children in the school, the goal should be to provide services that are the least intrusive and the most integrated and most typical and that provide the most opportunities.
Yes, having a label of autism could be detrimental in the classroom, especially if the label carries with it the idea that the child will be pulled out for special sessions and will miss out on opportunities in the classroom or that the child will have classroom support and will do everything off in the corner and not participate in what is regularly happening in the classroom. We need to focus on providing educated and appropriate services in the least intrusive manner; we need to find ways to incorporate instruction and support into a typical environment.
Ms. Wilkinson has a great amount of experience in the educational system and can probably add more. This is one case where it is not hard to make it work well.
Ms. Wilkinson: The reality is that, in Alberta's education system, you do not get supports and services without the label. That is the way it works. If my child did not have a diagnosis of autism, he would not have the services that he gets within the education system. Of course, you have to fight to get them anyway.
A big issue is that inclusion starts with the teacher and how the teacher plans to teach that class and how they accommodate. There is very poor education at the university level for teachers that addresses differentiation of instruction and how to teach to student differences. Teachers come out of a four-year university program with very limited education in that regard. Considering that now one child in 166 children will have autism, you can figure that in a group of 500 students there will be two or three kids in any given year that have autism. In a school with 1,000 kids, there will be even more.
Therefore, teachers will run across students with autism on a regular basis from the start to the end of their careers. They need to have the tools to deal with those children and classrooms well. Right now our system is not providing teachers with those tools.
Senator Carstairs: As a teacher, I can tell you that the hardest thing is to find yourself in a classroom with a child who has a spectrum, a variety of disabilities. It really does not matter which disabilities. You find yourself on September 3 with absolutely no skill to deal with a child. Not only do you not have the skills, you cannot acquire the skills because there are not even courses offered to help you get those skills.
Many teachers are fearful. I had a diabetic father, so when a child had a diabetic coma in my classroom, I knew what to do; I had seen it before and I know how to cope. Most teachers do not have a clue. We do not teach them that kind of skill. It is a disservice to the teacher as well as, obviously, to the child who finds himself or herself in that class.
I want to talk to you about the issue of funding for education. Two days ago, a well-known expert talked to us about the needs of disabled children in Winnipeg.
My experience as a provincial politician over a number of years was that as a percentage of the overall budget, the education budget was declining. In my province, it went from 18 per cent of the overall budget to 16 1/2 per cent of the overall budget.
They would argue that the money increased, but in fact it was actually decreasing. The largest increase in any education budget in any province in this country is for special needs kids, and rightly so. However, other parents are very angry about this because they say it takes money away from their children. How do we address that?
I suggested that many of these things are not education services, they are social services, and maybe they should be coming out of the social services budget instead of the education budget. Then you would not be pitting parents against one another as is happening at present.
Ms. Wilkinson: That is a very interesting comment. I was at a meeting of our public school board a number of years ago along with a group of parents with special needs children there because an initiative was to be presented. We happened to get there a little early during the discussion of another topic. One of the councillors asked a bureaucrat at the board meeting, "So exactly how much money are these special needs kids stealing from the other kids?" That comment from a member of the board of trustees highlights the tragedy of this situation. It is not only other parents who have that attitude; it is rampant through the system. To some degree the attitude that special needs kids are using up all the budget is perpetuated because, rather than allowing people to come together to deal with issues, it divides families and pits them against each other. There is a certain political strategy in having that attitude out there.
A huge issue that needs to be addressed is the question of where the money allocated for special needs students is actually spent. Is that money being spent effectively and appropriately? When you can that, maybe you can determine whether there is a need for more money?
The trend right now is to pump the majority of special education funding into segregated education, but the provincial policy is to have inclusive education as the first choice; again, there is a dichotomy between rhetoric and practice. All this money is being pumped into segregated education, which parents don't want; meanwhile, there are limited resources to help children be successfully included and integrated in regular classrooms.
At the high school my son attends, there is a segregated program for high school students with autism. He is absolutely appalled. He says to me, "What parents would put their child in there?" I replied, "Well, sometimes that is a choice parents make." He cannot believe it. The reality is that my son is a rarity. His is not the common experience for most teenagers with autism.
Regarding the funding issue, you have to be accountable for where the current money is going, and then you can say how much more, and you can justify to other parents what is happening. But the attitude around special needs children is that they are stealing: they are stealing money, they are stealing the teacher's time, they are stealing the resources. That attitude has to change.
Ms. Ludwig: I would challenge us to have a different vision. Instead of thinking of a classroom in terms of a competition for resources, think about how every child will benefit in a classroom where the teacher is well supported and where the students have all their needs met. That seems like a lofty aspiration, but sometimes dollars are put into programs that look good but really are just rhetoric.
A while ago we had a student health initiative. There was funding available for this program, which was a class for emotional issues, a sort of pickup for those children who were falling in the cracks. A huge machine was put into practice; on the front end it ended up being a consultative model where someone would come in and tell the teachers all the more things they should be doing in the classroom. It ended up being a burden in the classroom; it consumed a large amount of funding but did not help in a practical way on the front lines.
If we can provide the appropriate supports in the classroom, whether through education, additional staffing, additional supports, bringing in creative methods of fine tuning and tailoring some educational approaches and some expertise, everyone in the classroom benefits and we do not necessarily need to have a competition of resources.
It is clear that our educators are well-intentioned, but their hands are tied too. They face excessive demands, students with a variety of needs, large class sizes, and unique expectations and differences in every classroom. We must set up a climate in which the rights of each child in the classroom to achieve his or her potential and to have an appropriate education are valued and we have to ensure that proper supports are provided to the teachers and the staff, who are more than willing to value our children, so that those educators can be successful.
The Chairman: Where is the break point, though, where a child takes too many resources? There are 25 children in a classroom and the teacher has to meet all of their needs.
Every child has needs. I think we have to start with that. They have developmental needs and they may have shortcomings in their family situation or elsewhere. The teacher has to make a value judgment at some point as to whom she services. Obviously, as in the family, the child with the biggest noise and the biggest problem usually gets the biggest chunk of the attention.
In autism, where do you draw the line, or do you, that the child cannot be dealt with inclusively in the classroom and needs specific attention? Over the years, with respect to criminal behaviour, we have tried to draw lines so that we will no longer prejudice the majority, and we say that that individual needs special care in a special setting. Do we draw the line in autism that way?
Ms. Wilkinson: That concept has to be approached very carefully. When you have effective educational programs for children with autism you do not have behaviour issues and you do not have attention issues; you have kids who are learning in the classroom. It is a matter of giving them effective programming and appropriate behavioural supports.
My son has a full-time aid who helps him with the things he needs help with.
So where do you draw a line? I think you have to be very careful you do not place the burden on the child. You have to consider whether, given the right supports, the child is successful? If the child is left unsupported, essentially you are setting him up to fail, and he will not benefit from that inclusive setting. Inclusion is programming as well as physical placement.
You have to give children the appropriate supports. That expertise is available. Alberta Education has published a whole book around teaching students with autism. Putting the concepts into practice is the challenge right now, because the ideas in the book are best practices, they are standard interventions. Obviously the provincial ministry feels that they are appropriate to be done in an inclusive setting. Now we have to get them actually being done in that inclusive setting.
You can spend all kinds of resources, but if you do not spend them effectively, you have a problem. Having a warm body in the classroom is not the same as having somebody with appropriate knowledge, skills, and training who would be there to support the teacher and support the students. You have to look at whether we are spending money effectively or just throwing it away.
Ms. Ludwig: I am getting a sense that you are asking at what point full integration is best for the child.
The Chairman: In other areas, for example in ESL programs, it works to take kids out of the classroom for a period of intense treatment and then slowly integrate them into the classroom. Rather than trying to struggle with all the issues all the time in a classroom, sometimes a time out with specialized training is a good thing. I did not hear anything like that with respect to autism.
Ms. Ludwig: I think your comments are very well founded. There is no set perfect placement that fits the needs of every child. The goal should be the most integrated possible. Even if there are periods of time where the family, education, or the needs of the child require a more sheltered environment temporarily or perhaps long-term, the goal should be that the environment be the least intrusive and the most integrated possible.
Unfortunately, that is not what happens. We end up with an attitude where segregation is easier and families are persuaded that it is better because that is where the experts are who know how to meet the child's needs.
We have to differentiate between a strategic sheltered or segregated environment to meet certain needs and a warehouse. If we can differentiate between the two and set the standard so that children will be in the most integrated setting appropriate for them, that might be a better way of approaching this question.
Senator Carstairs: There could also be the problem that if there is a designated teacher and a segregated classroom with six spots, and you only have four children who actually need that program, you are in a position of having to find two more.
Ms. Ludwig: That would be very sad.
Senator Lovelace Nicholas: What about children whose parents do not have transportation or the financial means to access the programs?
Ms. Wilkinson: The outlook for kids without intervention is a fairly bleak one. In the majority of cases, kids with autism who do not have intervention will as adults live in some kind of institutionalized setting. There are group homes or more formal institutions, or many adults with untreated autism get into trouble with the justice system and end up in jail. Without treatment, the chances for children with autism to live productive, independent lives are very low.
When parents cannot afford to pay for treatment themselves and cannot access treatment through the various provincial agencies, the children go without.
Ms. Ludwig: That brings us back to the idea that we need standards and in outlying areas where some services cannot be accessed, we need to set something up. We cannot have a situation where kids within a city can get programming while those outside the city cannot. That goes hand in hand identifying what the standards would be, providing some encouragement and some accountability so that those standards are met, and then dealing with specific issues along the path.
Senator Mitchell: I studied this problem in university 35 years ago; it seems that some progress has been made but clearly not enough.
I am interested in something Ms. Wilkinson said with respect to standards. Did I understand correctly that various clinics or agencies actually adhere to different standards of treatment and that there are medically supported standards but they are not widely applied? If that is the case, how does it occur? Is there not some sort of governing body? If not, should there be one?
Ms. Wilkinson: The best current treatment for children with autism is a technique known as applied behavioural analysis or ABA. That is used as the international benchmark for the type of intervention from which children with autism benefit the most.
In Edmonton and Northern Alberta there is one company that provides this service. It is actually a sub-office in Calgary of a company based in California.
There are no local service providers who do ABA. However, the service providers are approved by the provincial Family Support for Children with Disabilities program to provide treatment for children with autism.
When parents phone me asking how they can access ABA for a child, I have to tell them that there is one company in Calgary, originating in California, or the company from California will send someone to Northern Alberta. Actually there are two service providers but only one of them resides in Alberta. You have to call one or the other of them and hope that they have some personnel available who will take you on.
Senator Mitchell: Does government pay for that service?
Ms. Wilkinson: The government has approved those two service providers who do ABA. They have also approved many more service providers who do not do ABA.
Right now ABA is the clinical benchmark for treating children with autism. It is the most effective treatment, which is proven in the literature. But we are not using it as the standard in Alberta. It is not being used as the basis of intervention for children in this province.
To date, no standards have set around intervention. There are companies providing intervention in Alberta whose directors may be occupational therapists, speech language pathologists, or, in the odd case, psychologists. If you ask those people where they were trained in doing intervention for children with autism, or whether they took graduate degrees or whether they have some credentials, the answers are negative.
Senator Mitchell: How could a standard be imposed or applied more generally? Would it require the medical association or the psychiatric or psychological associations? Who would do that? Is there some governing body of autism in Canada, or could one be established?
Ms. Wilkinson: Personally, I think the leadership needs to come federally. When you have people other than doctors doing intervention, all of a sudden the medical association does not want to set standards. All those other disciplines have their own professional bodies. Thus, no one group can say, "This shall be the benchmark; these shall be the standards or the best practices."
In the United States there are several multidisciplinary organizations that are both parent-driven and professional-driven that advocate for standards for graduate degrees with a certain number of hours of apprentice practice before you go off on your own to do intervention. There is advocacy work being done, but there is certainly nothing happening on a bureaucratic or legislative level.
The Chairman: We have come to the end of our session. I want to thank you for sharing your own personal experiences as well as speaking on behalf of parents with children with autism and for a very frank discussion. I think we have learned something more than we knew about the situation here in Alberta but also about autism in general. We thank you for that and we will attempt to incorporate your comments into our work.
Senators, our next panel of witnesses is composed of Renée Vaugeois, from the John Humphrey Centre for Peace and Human Rights; Penny Hume, from Child and Youth Friendly Calgary; and Beverley Smith, from the Care of the Child Coalition.
Renée Vaugeois, Executive Manager, John Humphrey Centre for Peace and Human Rights: The John Humphrey Centre is a small organization here in Edmonton that works to advance human rights through education. We do a variety of activities from educating various ages of youth to engaging with the community on how we can advance human rights issues.
I felt that I could not give you an academic presentation on how the implementation of the Convention on the Rights of the Child could be more effectively monitored or implemented to reach Canada's commitments. I can speak to you only about what we hear in the community and what we are hearing from the youth. We really work to engage youth through a variety of projects.
We have a project, Human Rights City Edmonton Project, which is part of a global initiative of 14 different cities around the world to advance human rights within the city. Through this project we do a lot of engagement with youth. We also engage with many non-profits in the community. We often hear their stories about their struggles and challenges in dealing with youth or children in the community.
A critical issue in Alberta is that we are now in a period of extreme economic growth, and that brings a lot of pressure in terms of human rights issues around youth and children. For example, the explosion of the population in Edmonton has drastically increased the number of children in the community who have autism, putting more pressure on the organizations that deal with children and families who struggle or cope with autism.
There is a constant struggle now in the non-profit sector to cope with emerging issues. The economic boom is putting increased pressure on our ability to provide appropriate services and to respond effectively. Strong mechanisms and funding are needed to support the work of the voluntary sector, which continually seems to be taking on more and more of the roles of protecting and implementing the Convention on the Rights of the Child with fewer and fewer resources available to them.
I mentioned that at the John Humphrey Centre we work to educate and engage youth. I would like to tell you some of the key things we hear. A critical issue is the increasing number of immigrants and refugees coming into our community. It is quite a complex issue: not only do we often deal with children who come from areas of conflict and who now suffer emotional or psychosocial trauma from their prior home, but also these children are put into schools where they are often unable to cope or where racism is alive and well. Racism in the schools is a problem.
I find it amazing that youth in our community will point out to me that they go to a school on the other side of the city specifically because the school closest to them has too many natives or too many blacks, and that attitude is reinforced by parents in the home.
Racism is still a critical issue in our community. Race bullying is a problem. We do have organizations working on this issue, but it is a severe problem. Articles 16, 19, 34 and 37 of the Convention on the Rights of the Child are all about discrimination.
We have heard that within the Aboriginal community racial discrimination has had a significant impact on children and youth of the community, which affects them not only now but also into their future.
We continually hear through the surveys and workshops we have done that the legacy of discrimination in schools lives on beyond childhood. Quite a few people have told us that a turning point in their life was a race-based bullying incident at school. The Aboriginal community has also expressed concern about the retention of Aboriginal children within the community and their families as a critical issue as it impacts the retention of the Aboriginal culture.
The interesting thing about racism is that it persists beyond the schools. In the workplace in Edmonton we have seen significant effects of racism on children and families. Racism in employment, which affects being able to find a job for which you are qualified or the ability to be promoted, for example, aggravates the stress that seeps into the household. Stress affects quality of life by affecting parents' health, both physical and psychological, which can lead to increased incidents of alcoholism or domestic violence. It can also lead to challenges in finding good housing.
Children living with immigrant or refugee parents who are suffering racialized stress in the workplace can be adversely affected, carrying the long-term effects of racism on the child, family, community. Discrimination and racism then are important issues that youth in our community face.
Another community that is struggling right now in terms of youth and children is the gay and lesbian community. The fears expressed by some of the youth about coming out in our community and some of the stories we have heard are particularly traumatizing. The mental and physical stress that some of these children face is appalling and tragic. They fear being beaten and that sort of thing.
We have done several workshops with youth at risk in our community, and they have expressed their daily challenges and how they suffer discrimination. They expressed a concern that they suffer unfair treatment in the courts; they perceive that. They have a fear of being beaten on the streets. They have also expressed a serious concern about police brutality and domestic violence.
Often we share the Convention on the Rights of the Child with these youth when we engage with them. The last group we talked with said, "This is just a bunch of words. These rights get broken all the time."
Whether they are children with disabilities like autism or at-risk youth or immigrant youth, these marginalized children and youth tend to continue to be isolated within the framework of our society, to have lessened self-esteem and to lack confidence to effect positive change. There is a real need to provide the space to engage with them.
I know that iHuman Youth Society was scheduled to make a presentation to you today. Organizations like iHuman have done incredible work, yet they struggle to survive, which is very unfortunate. They are desperately needed to bridge the barriers of even the different social spheres of youth.
All of the issues I have addressed are about the rights of the child. Discrimination is really about the rights of the child. I think Article 25 is about quality of life.
In order to promote and protect human rights, we need to enhance public knowledge about the Convention on the Rights of the Child and the Universal Declaration of Human Rights. Education, particularly in the school system, is another challenge. There is a problem with placing more on the backs of our teachers who are already extended and often focused on departmental exams.
How do we promote effective implementation of human rights learning, which I think is critical to advance our ability to reach our commitments, without extending our teachers as our non-profit sector has already been extended?
We hear in the community too a general feeling of uncertainty and difficulty when somebody wants to address a human rights violation. The commission appears sacrosanct, and long, extended processes tend to keep people away from wanting to pursue those methods. There needs to be a strong movement in terms of plain language for those who are marginalized to ensure they have access to justice. There is a fear of backlash if a violation is pursued with the commission, for example.
People want alternative methods to address concerns. We are hearing that there are not many safe places for dialogue and constructive growth around these issues. Protecting children and meeting Canada's international commitments to the Convention on the Rights of the Child and the Universal Declaration of Human Rights are complex problems.
The key challenge is due to the depth and breadth of the human rights as delineated in the convention and the declaration. Monitoring and implementing human rights is a serious challenge that cuts across sectors. Much of it is subjective, and it becomes difficult to quantify and qualify many of the human rights associated with the convention. We have major challenges ahead of us, but it stresses the importance of the government working in cooperation with the private and the non-profit sectors, whether through dialogue or funding mechanisms and that sort of thing.
It is important to strengthen the non-profit sector to be able to cope with the added pressures, particularly in Alberta where the progress in the private sector has not necessarily permeated into the non-profit sector.
Cross-departmental work and holistic approaches to addressing the needs of the children are necessary. Really, that is what human rights work is about. Human rights legislation gives us a holistic, multidisciplinary framework with which we can move ahead and which is the ideal we continually strive towards.
That is all I had to say, except that I hope that you, too, in this process have been able to engage youth.
Penny Hume, Executive Director, Child and Youth Friendly Calgary: I would like to thank you for inviting me to the Standing Senate Committee on Human Rights. It is indeed a great honour to be asked to present at this meeting on the United Nations Convention on the Rights of the Child.
Child and Youth Friendly Calgary was born of a conviction and lives as a trustee of a dream. The conviction is that fundamental human rights are not conditioned by age. The young are entitled to protection and nurture. They are also entitled to respect.
Respect means recognition. Respect means that curiosity is accepted and met with response. Respect means the right to be heard. Respect means that talent should be fostered and celebrated. Respect means the opportunity to be a contributor, not just an observer. Respect means the awareness that all those decisions that affect adult lives affect young lives too. Just as our community struggled to find ways to allow adults to participate in meaningful ways in the common light, so communities must find appropriate ways to allow young people a voice in a world that conditions their lives as well.
Child and Youth Friendly Calgary is a charitable non-profit organization with all the same problems as every other charitable non-profit. We were established in 1992 based on the firm belief that young people who experience being contributing members of society will become adults who have a sense of ownership and responsibility to their community.
Our purpose is to provide meaningful opportunities for young people to contribute to our community. We offer many different programs. Some are aimed at the high achieving young person, while others take place in the Calgary Young Offenders Centre. We engage youth through the Mayor's Youth Council, the Youth Volunteer Corps, the Calgary Youth Foundation, and seven other diverse programs. The youth involved come from all high schools in the city of Calgary and at least 40 per cent are visible minorities.
Canada is experiencing a decline in participation of its citizens in such things as voting, volunteering, and general community involvement. We need to promote these values amongst the young in our communities. We need to honour the young people who make a huge contribution to the well-being of our communities. We need to involve all young people. When they get involved in the community at a young age, they understand what they can contribute, what a difference they can make, what their rights and responsibilities are. They will also become adults with a greater knowledge of the communities in which they live and what they can do for those communities.
Recently, through the McConnell Foundation and the International Institute for Child Rights and Development, we have become involved in an initiative to increase the resiliency of communities by leveraging the capacity of young people in the process of planning and implementing community development initiatives focused on excluded or disengaged youth. The engagement of all young people is crucial to the health of Canada's communities, and what these young people can contribute is essential to not only our future but also our present.
Through the proposed office of the children's commissioner, schools, federal, provincial, and municipal departments, and a strengthened and more cohesive voluntary centre, young people could become one of the watchdogs of Canada's compliance with the rights of the child. By focusing more attention on the convention and having young people involved in the monitoring of it, the entire community will become knowledgeable and engaged, thus ensuring the convention in the daily lives of both adults and children.
There are, however, many obstacles to be overcome. As pointed out in the executive summary, with significantly under-funded voluntary sector organizations seldom acting as a cohesive body moving towards the same goals, the voluntary sector is often unable to muster the coordination necessary to ensure effective outside monitoring of children's rights in Canada.
Although there are few organizations working exclusively on the implementation and monitoring of the rights of the child, all voluntary organizations that work with children are concerned with and have an interest in the United Nations convention. More funding for organizations such as the Canadian Coalition for the Rights of Children and Ms. Vaugeois's organization would help to bring together some of these voluntary agencies. That is essential.
Specific funding for programs that could be implemented in voluntary organizations and as part of the curriculum in the schools to help explain and monitor the convention would also be high priority. There are also issues of insurance, risk management, organizational capacity, and the list goes on and on, that also need to be addressed.
I believe that young people have the right and the responsibility to be a significant part of monitoring the United Nations Convention on the Rights of the Child. Working with knowledgeable adults and mentors, they could make an enormous contribution to this work and could involve and engage the entire community.
Child and Youth Friendly Calgary is also the trustee of a dream. The dream is that those nurturing experiences of civility, of learning, of creativity, and of acceptance that we strive to provide for children will also be the characteristics of the life of the community. That will happen when children are allowed their rightful place in society.
Thank you again for this opportunity.
Beverley Smith, Spokesperson for the Unpaid Caregivers Coalition, Care of the Child Coalition: The little folder in front of you with the balloons is from me. It contains my original submission, a revised submission, and then my comments on your report.
My main concern is that when we implement the Convention on the Rights of the Child we should pay close attention to key articles. The first is about who takes care of the child. The second is about what type of care that child has a right to receive. Article 7 says the child has the right to know and be cared for by his or her parents. Article 9 says a child shall not be separated from the parents against their will. Article 11 says a child has a right to express opinions about his or her own care.
Current children's policy in Canada does not go far enough to recognize those rights. Our universal benefit for children goes only to age six and it is a very small amount. We thereby ignore most costs to age 12, and just about all of the costs to age 18, and the convention defines a child as being under 18. What benefit we provide is very tilted also, to some children, not to others, and to some care styles, not to others. That unequal benefit deprives the child of the dignity that is an overriding principle of the convention.
We need to fund children, period — fund them in daycare, fund them in day homes, fund them at grandma's, fund them when they are with dad and mom. Sadly, current policy massively favours one care style, institutional daycare, by non-blood relatives of the child.
In 1980 the Senate did a study, Child at Risk, which found that for children, two things mattered. One is that until age three, the child should be taken care of by the same person, not by a series of foreign faces. That is important for the child's stability. The second condition was that the caregiver should be someone who loves that child, because children know the difference. It does not have to be the parents; it can be someone else. It can be someone else that the parent trusts, someone that the child trusts, but it should be someone that cares for that child. That is what matters from the child's point of view.
We do not have a policy that recognizes those conditions. In fact, we have laws that make such care unlikely. Our maternity provisions help only some mothers be with their newborns, certainly not all mothers. We play favourites among children based on the earning style of the mother. We should not. Depriving a newborn of the mother's presence is a recipe for problems for the child.
Our child care expense deduction is claimable only for some earning styles, not others. Parents deepest in poverty ironically are the least likely to get state help for the school lunch program or music class. To require the family to be dual income in order to claim the deduction contradicts the 1970 Royal Commission on the Status of Women, because all parents have costs of rearing the child.
Our tax system penalizes the single-income family by a 45 per cent higher tax rate. Even households with two incomes pay gradations of this penalty. We can correct that, and many nations have.
Our pension plan penalizes for life the household where one adult was home for a time taking care of the children. Seventeen pension rights groups — advocates for 2 million pensioners — are meeting in early October in Ottawa to ask this government to correct that penalty. They are a force to be reckoned with. Watch out for the seniors.
I maintain that because we play favourites with children and because current law prefers non-parental care, we are not living up to some of the articles of the convention.
My second area of concern is the style of care given. In Article 8 we see the child's right to an identity and to preservation of family relations. A child has a right to learn the language and culture of his or her heritage. Sadly, again, a one-size-fits-all daycare system with standardized programs cannot do that.
Some people want children to go to daycare so they will learn the second language, but some want to make sure they learn the first one first. I am a teacher and I have actually got quite a bit of experience in the situations you are talking about. We teachers find there is such a thing as illiteracy in two languages, where children do not learn their own language and do not quite keep up to snuff on the second one. I believe we should give them their first language first and then the second one.
If we send children into the socialization pool too early we create problems for them of identity. Children have a right to be proud of who they are.
The convention says we must ask children their views. In Article 14 you see children have the right to freedom of thought and conscience. When we set up national daycare, we did not ask the children whether they wanted that.
The governments, not just the Liberals but also the present Conservatives, sadly invite stakeholders to those meetings, and they usually consider stakeholders to be people who operate daycares. As parents we are not against daycare but we would like choice to be represented in those meetings, and we have actually been excluded from some of them.
We have to enlarge the consultation. We must ensure that all parents and grandparents have input and that children are given a choice about what care style they like. Some do like daycare. I have two grandchildren in daycare. Others prefer to be with a few playmates down the street at the home of a neighbour, with grandma, or with a parent at home.
Parents have handicap children, children with multiple allergies, shy children; some of those parents want to be home with the child, some of them want professional care, some of them think they are the professional. We have to permit diversity.
If we asked children they would tell us. I was speaking to a man named Bo Pedersen in Sweden this past weekend. An international phone call is not a regular occurrence for me. Mr. Pedersen made a complaint at the United Nations because the Convention on the Rights on the Child was not being followed in Sweden. As you maybe know, the government of Sweden fell this past weekend. The government that had been in power 70 of the last 80 years fell. The nanny state is having trouble.
We have to look at that. Why are people so unhappy? Obviously, my bias is that they are not being given enough choices about their personal decisions in life. Sweden, which massively funds daycare and really penalizes you for being home with your child, has one of the highest suicide rates in the world.
Children are entitled to equal benefit under the law. I know that daycare advocates will say, "Well, we will give them equal access to daycare. That is what is universal."
That is not a democratic interpretation of the convention. You cannot say, "You have equal rights as long as you agree with me." It has to be, "You have equal rights." Therefore, I would fund the child. It does not hurt people who use daycare. It gives us all equal benefit.
The Chairman: Thank you.
Senator Munson: Once again I am going to put on the record that the media should be here today covering this meeting. I will to write a letter to the local media, because while we are all here discussing these issues, who is listening in Alberta? Where do you go beyond here? As I said before, if the issues being discussed were oil and money, this place would be packed.
You raised your issues, but I wonder whether you have views on the Protection of Children Involved in Prostitution Act. I guess it allows for the involuntary detention of child prostitutes in an effort to protect youth at risk. A police officer or a director who has reasonable grounds to believe that a child is in need of protection may apply to the court for an order to apprehend the child and either return him or her to a parent or detain the child in a safe house for assessment and counselling. However, if the police officer or director believes that the child's life or safety is in serious or imminent danger because the child is engaging in or attempting to engage in prostitution, then the police or director may detain the child without an order from the Court. I understand that by the end of 2003, more than 700 children had been apprehended since the law came into force in 2000.
Can you tell us more about the need for this law and its effectiveness since implementation? Can you tell us more about the number of children apprehended since the law came into force and about the outcomes of such apprehension? What generally has been the reaction of children, community workers, parents, police, and government to this law? I understand that Alberta is fairly vague in terms of this law and it is rather controversial.
Would anybody like to address that?
Ms. Smith: I am speaking as a person who does not have a lot of knowledge, but we also have a similar law for youth on drugs. It is controversial, and I have heard of the two extreme points of view, parents saying, "Protect my child; he is not competent to treat himself," while the child is saying, "No, I will do what I jolly well like." Thus you are going against or overriding the child's will. It is a tricky issue.
The Chairman: I do not presume that any of you are experts in this field, but if you have any anecdotal evidence from your organizations to react to Senator Munson it would be helpful.
Ms. Smith: I can tell you one anecdote I heard. A 16-year-old girl ran off to Vancouver with some guy and was apparently in a trick pad. The mother found out, called the police and said, "We have to intervene." There were two police officers with her. One officer said, "We cannot do anything. She wants to be there." The other officer said, "I am a dad. We are going there."
Senator Munson: Could you please give your general views on social services in this province? For those of us who live and work in the East, and I always include Atlantic Canada in the East, so you do not have to be afraid of an Ontario senator, where does the West begin?
We heard this morning that there is a misperception in the East regarding the treatment and services for autism in Alberta. There is a perception that Alberta is the place to come, that there are money and programs here. Do you think this government is spending enough money on social services? Is industry paying enough attention to social services?
We hear that Fort McMurray is cracking at the seams because of new social infrastructure and that Alberta is not quite ready for it. I guess the absence of media people covering this meeting today indicates that social services issues are being ignored when there are fights at city hall or that sort of thing.
Ms. Smith: Could I just mention that Premier Klein is resigning today, and maybe that needs deeper thought than I realized. Maybe that is where the press is.
Senator Munson: Maybe.
We are a bipartisan committee, and I have discovered in my three short years at the Senate that people actually do pay attention to our recommendations on various committees, and the reason they pay attention is that we do not engage in political BS.
We actually sit down together as a group and develop ideas, and then we present them to government, and hopefully somebody listens and they are implemented. I am quite passionate about what we do because we do not have to worry about all that other nonsense.
Ms. Smith: I appreciate that the Senate has that sober second thought rule, because there is really too much partisanship in the House of Commons in a way for us to be heard by people who are more likely to be unbiased. It is great.
Ms. Hume: One important point is that, particularly in Fort McMurray but also I think in Calgary and Edmonton, young people can get jobs with no problem. They are making good money. That will affect the social infrastructure, particularly in Fort McMurray but also in the other cities. It will have serious consequences down the road.
In Fort McMurray they cannot keep Tim Horton's open because there are not enough young people to work there. The Kids Help Phone contacted me one day because in all of Fort McMurray they could not find two young people to volunteer, because they all work.
Learning about the community you live in comes from experience in that community and these kids are not getting it. I think it is a transient society in many ways. They are there for three or four years and they are not really tied to the community. I think that is going to create serious social issues down the road.
Ms. Vaugeois: I appreciate your question about whether enough attention is paid to the costs. An incredible woman from our community recently left Alberta because she could not find the funding help to support her disabled child.
We have workshops with the disabled community and they repeatedly tell us that the assistance for severely handicapped people is not even close to enough and the costs of disabilities are disabling. For example, support does not cover the cost of catheters, which has increased 200 per cent over the last five years. Those costs get put onto the families.
I hear constantly in the community that no, there is not enough support. When it comes to severe handicaps or disabilities, it is a huge challenge to be able to raise a child in Alberta.
Senator Poy: Ms. Smith, you mentioned about funding the child instead of funding daycare centres and professional child care workers. I believe in what you are saying. I am a mother and a grandmother.
What do you think the funding should be per child and up to what age? Have you thought of that?
Ms. Smith: Dr. Pierre Lefevre of the University of Quebec suggested about $5,000 per child per year, and a whole bunch of Canadian organizations have suggested about that amount, including Citizens for Public Justice and various women's associations.
They are thinking of the mechanism of the child tax benefit, which personally I do not think is the appropriate mechanism because it is all clawed back and has those conditions on it. I like an unconditional mechanism. We need more money than Mr. Harper has given, but he is on the right track about equality.
Senator Poy: Up to what age?
Ms. Smith: A family allowance is given in France until children are 22. I am not asking for that.
Senator Poy: What do you think?
Ms. Smith: Well, if we go with their convention, it says childhood ends at 18 years of age. I have four children. We know that children are in massive debt. Some are coming out of university with $400,000 debts. Good luck starting the family. You are going to be delaying that.
We have to look at funding mechanisms that go well into the teens. Unfortunately, you would probably not agree with this, but kids get more expensive as they get older.
Senator Poy: I do know that.
Ms. Smith: Yet the government works the other way. An older kid will get less. It is funny that way. I know we expect them to be earning a little. I can see that. I also think that post-secondary education is an investment. Here is penalizes kids very much, but it is free in France.
I think you have to deal with the issue that you are the federal government and health and education are both provincial responsibilities. The crossovers are incredible but you cannot jurisdictionally solve some of the problems you are being brought. I am trying to talk to you through the tax system, which you can affect. You probably will have some trouble intervening in education and in health.
Senator Lovelace Nicholas: I have a comment about racism. We deal with racism every day in our schools. At my children's school we suggested that teachers go through sensibility training. That has worked to an extent. It is not perfect because the training is not mandatory, but some teachers are willing to take it and it is working.
Senator Carstairs: I have a number of comments to make, but I want to begin with Ms. Vaugeois, and I want her to know we are hearing from the gay and lesbian community this afternoon. We are also having a youth panel. I think both of those are important.
While Ms. Smith and I might have fundamental disagreements about funding for public, non-profit child care spaces, we do not have any disagreement about all the others. She is quite right.
One of the most depressing aspects of the child tax benefit for me was that it was clawed back from welfare recipients, which I just could not comprehend. It is predominantly mothers who get those monies. They are the poorest of the poor, and yet provinces clawed them back. That is the problem with much of our tax system, it seems to me.
You mentioned the obvious difficulty that health and education are very much provincial jurisdictions constitutionally, while tax policy is predominantly federal. Where I see the difficulty is when the federal government institutes what I think are more equal tax provisions, and the provinces step around and say, "Okay, this is a new benefit to us." What are your comments on that kind of difficulty?
Ms. Smith: On the daycare issue, when Ken Dryden traveled around the country to get everyone to agree with national daycare, we know that Heather Forsyth in Alberta and Bernard Lord in New Brunswick objected to the one-size-fits-all formula. Both worked very hard to try to get some benefit for parents who do not use daycare. In Heather Forsyth's case, they were able to get some tax breaks for single-income parents to use for music classes and things, but very small breaks. Bernard Lord's people were able to free up some provincial money to fund some parenting in the home.
I understand the problem. I think it is really offensive if you do see the merit in something and the province puts the money into building a road or something else. It would drive me mad.
Senator Carstairs: Education programs are useful. They do bring awareness to issues. However, often education programs end up mired in administrative costs and do not result in the delivery of programs to the children we need to address.
Should we be using NGOs to deliver more of that kind of programming rather than trying to overburden again an education system that is too overburdened already? If we mandate NGOs, do we engage the full participation of the community in the delivery of those programs? That is why the school is always used, because, after all, the children are all there, a captivated audience.
Ms. Hume: I agree completely that education is very useful and it goes part way. However, when young people can experience things and can actually change things themselves, that is a much more effective way of learning.
Through the McConnell Foundation program they are trying to find ways to engage young people in the community who are already disengaged. They are looking for innovative ways to engage immigrant children, disabled children, Aboriginal children — any kind of disengaged young person.
A big chunk of that is human rights. Using NGOs is, I think, the best way to address human rights issues, but they are not in shape right now to be able to do it, largely due to lack of funding.
Child and Youth Friendly Calgary receives about one-sixth or one-seventh of our budget on a pretty much guaranteed basis from the City of Calgary. We get about 1 per cent from the Province of Alberta. We get nothing from the federal government.
We get a lot of money from lotteries. We are having our first lottery this year. That is the way they fund. We will be guaranteed to get $80,000, which is about a tenth of our budget, through the lottery and through having a casino.
Ms. Vaugeois: I absolutely agree with you. At the John Humphrey Centre we are dialoguing with teachers and other non-profit organizations to determine how best to get human rights awareness learning into the schools and into other areas where youth may be involved, such as boys and girls clubs or different groups.
We are doing five workshops with teachers over the next year to explore that a little more. We have just developed a curriculum for teachers to implement. Again, it is putting it on their backs.
We have been working with teachers to figure out how we can work together. We are trying to build a database of various non-profit organizations that can deliver different aspects that relate to the curriculum so that it can be easy for them to use. I think mandating non-profits to do this work is a great idea, but there really has to be that push for them to involve different segments.
We have done a summer camp program for the last six years. It is easy for us to go out and deliver summer camp education, which is experiential learning for youth about human rights. It is easy for us to hit the average, middle class white kid. That is a severe problem.
We have been trying to figure out how we get out there. We have been going to at-risk youth places trying to reach the immigrant children this summer, and it has been such a remarkable experience for us. That kind of work should become almost like a condition of the funding. If non-profits are funded, they really need to target those other segments of the youth population.
Senator Carstairs: Several years ago, we at the federal level and many provinces stopped funding core programming of any of the NGOs. I believe that has created a huge problem. It is often easy to get project funding for a specific project. Meanwhile, the rent is not paid, the phone line is not paid, the main staff organizing the project are not paid. Do we have to rethink that? Do we need to go back and look for more funding of NGOs?
Ms. Smith: Could I just say maybe not.
Senator Carstairs: Maybe what?
Ms. Smith: Maybe not. I knew that would shock you.
I agree we should have core funding for some groups, but I would question the groups. Decisions about where taxpayers' money goes should not be made behind closed doors with your buddies. I know you are not doing that.
In my movement, for the last 30 years we have bent over backwards to get recognition for our organizations in order to get funding, and we have never succeed. That is not true for organizations that promote daycare.
Of course, that does not make us happy. I would not give those people more and more funding with guarantees that they can continue forever unless it is paralleled with funding for people who have other care styles. That is all. Fund them, sure, but fund equally.
Senator Carstairs: Balance.
Ms. Vaugeois: You absolutely have to reconsider that. When we talk about human rights, whether providing services, programs or education, it is multidisciplinary, and all of us organizations want to work together. We desperately want to work together, but because we have no core money we have a real project orientation and focus. We have no core money to allow us to spend time on other organizations' advisory committees, and so on. That is a real barrier to our being able to work together.
Ms. Hume: It is much easier to build in core funding from a corporation than it is from the governments, the city. We are fortunate; we get core funding from the City of Calgary, but it is much easier for Suncor. They are much more aware of the issue.
The Chairman: It is interesting that we are having this debate. I was privileged to chair for the federal government in the early 1970s the national study of nongovernmental participation in our democratic society.
There are two issues: First, to what extent must or should the government fund organizations, attitudes, and opinions in the community as part of the democratic process? Second, how should NGOs respond to governments and this whole push for coordination?
Coordination sounds like a wonderful word, putting NGOs together with one voice. The problem is that we need the disparate voices in our society.
I think I will dust off that report, because we are talking about exactly the same issues with the same fundamental values in a democratic society. Obviously, restructuring core funding was very much a consideration. "People in action" is three words. We said if we did not include people, it would become two words.
Senator Tardif: Ms. Vaugeois, you mentioned that an increasing number of immigrants and refugees are coming to Alberta. Ms. Smith, I believe you mentioned as well that the child had a right to his or her identity and a right to learn the language of his or her heritage and to master that first language.
"La francophonie multiculturelle" is starting to arrive more and more in Alberta. Edmonton now has some 2,000 Congolese who are part of the francophone community.
I was wondering, have you had people telling you of their needs? Do you feel that enough is being done in Alberta? What could and should be done?
Ms. Vaugeois: During workshops and in conversations they have not spoken to us specifically about their right to identity and culture. They are very focused on basic needs right now. I think they tend to feel that they need to try to make themselves fit and to integrate the best they can rather than focus on their own cultural identity at this point.
I do not feel I can speak to that question very well yet.
Ms. Smith: I think we are doing extremely well at integrating. I taught at a junior high school recently, one of our best schools in the city, high end and very well funded by the parent groups. The students are mostly Chinese people. It is wonderful.
We are integrating them very well, but we are also not giving them their own identity. Yesterday I taught grade 3 at Connaught Elementary School. There were kids who had had traumatic experiences in the Sudan. Some of them had never been to school. They are ten years olds. That teacher is working hard to try to give them a sense of pride too, but integrating them at the same time.
I think our movements to integrate are working well and our movements to let them have identity of their own are working poorly.
Senator Nancy Ruth: Ms. Vaugeois, my total life experience is that rights are never given, you have to take them.
My question is about your educational materials and the opportunities you have to insight revolution amongst those who are getting them. I would remind you, too, that every charity is allowed by law in Canada to use 10 per cent of its income for political activities, and I would encourage the John Humphrey Centre to do so. What are you doing?
With respect, I just never think education is the answer.
Ms. Vaugeois: Our whole curriculum is based on providing them the opportunity and space to take action. For example, the Grade 10 curriculum we recently developed is about experiential learning, giving them an opportunity to explore their issues in a practical, hands on way, but then also to create plans for action.
More and more we are trying to figure out how to facilitate youth's using the medium they feel most comfortable with, whether hip hop or film, for example, to express themselves around issues they think the community needs to hear about, including human rights.
This is a great opportunity to say that the John Humphrey Centre recently won the bid to bring the United Nations Youth Assembly for the first time ever outside of New York to Edmonton next year. It will be such an incredible opportunity for us to put the power of Edmonton's youth behind some real issues and give them a real voice around key issues. We are very excited and we are focusing on that.
Senator Nancy Ruth: I am just saying that Sandra Lovelace did not get her rights by going to an educational school; she got them by suing.
Ms. Smith: I like the way you think about revolution. I love it when kids take action. My kids were in junior high school, and the students walked out of the school for their right to wear shorts to school. I did not approve of the message but I loved the idea they thought they could win.
I tried to organize a rally years ago to protest against the lack of school funding. I was a parent, not a teacher at the time. It was a pathetic rally; hardly anybody came. The next week, the high school students came. They blocked Centre Street. They blocked 8th Avenue. The police had to come. It was one of the best experiences of my life. I love the power of kids when they believe they have a right.
Senator Nancy Ruth: Part of my concern about the educational model is that if you incite revolution, if you incite the kids to action, it has to some extent be managed, because there will also be disappointments. To encourage people to continue to grind away at whatever it is they want, there needs to be some framework. You have to do the positive spin and help them move on to the next step or level.
The Chairman: I think we could debate what education is and how you define it. I take the United Nations' view that education is the first step of awareness to go on to a more structured education, et cetera. I do not think we are disagreeing; I think we are just framing the problems and questions differently.
I thank you for encouraging the debate amongst yourselves and amongst the senators here. You have done your job and task very well. We will take your comments into account in our studies.
Senators, we now welcome from the Métis Nation of Alberta Ms. Fran Hyndman and Ms. Eileen Mustus.
Fran Hyndman, Tripartite Manager, Métis Nation of Alberta: I want to thank you for this opportunity and to bring you greetings from our provincial president, Audrey Poitras, and our provincial vice-president, Trevor Gladue.
My written submission provides an introduction about the Métis Nation of Alberta. On page 3 there is a breakdown of our regional offices in Alberta. The Métis Nation of Alberta is divided into six regions. We have regional offices in six communities. Our board of directors is made of up 14 representatives. That would include Ms. Poitras, Mr. Gladue, and then the regional leadership.
Being in tripartite, when I first started at the Métis Nation of Alberta over five years ago, the framework agreement we had with Alberta did not provide funding for health. I kind of took over that sector and found that I loved it. If we want to speak about what we believe in, I believe in health, and at the Métis Nation of Alberta we have all come to believe in health and healthy living.
We brought you some gifts. One of them is a plastic water bottle with our logo on it. It says "Become Aware Prevent Diabetes." Recently, we have had many projects. In fact, I am proud to say that Health Canada has funded us for five and a half years of projects. We got a half year because they are in transition right now renewing their Aboriginal diabetes initiative.
We have gradually started working with children. I am a mother of six, so I like children, and I have always thought working with kids is very rewarding because of their honesty, their energy, their vitality and all the rest of it.
We have hit on something very good, which is that young people are open to ideas and they are energetic and they want to participate. We have been doing a lot of work on diabetes. Ms. Mustus will talk about fetal alcohol spectrum disorder, FASD. We work on HIV/AIDS. We have also had success in targeting our leadership. When have you buy-in from your leadership, you automatically have more success.
Our brief also describes the actual tripartite process agreement, which was signed in 1992 between the Métis Nation of Alberta and the federal and provincial governments. I am sure that is all old hat to you. You are aware of that tripartite agreement. Hopefully, I have provided you a little more information about the Métis Nation of Alberta.
On page 6 of our brief under the heading "Main Concern" I mentioned Capital Heath. I attended a meeting this week of the Metis health committee. We are planning a gathering, a community engagement session, to speak with Metis people and Capital Health, because Capital Health feels that they are not serving the Metis people as well as they could and they want to speak with us.
At this meeting, a Metis elder shared with us that she works at the Amiskwaciy Academy, our Aboriginal academy. There was a young 16-year-old Metis girl there who needed services, but because she is Metis, she could not get the same services that a 16-year-old treaty person could. Three years later, at 19 years of age, that young lady successfully committed suicide.
My message is that we are here to advocate for Metis children who continue to fall through the cracks and who are not helped just because of who their parents are, where they were born, or where their family tree goes.
I want to mention that it is great that there are programs in the City of Edmonton in this very wealthy province and this wonderful country where Metis children and other children are fed lunch and some of them even get breakfast, but there still is a lot of poverty. Many families are still suffering and struggling.
When a Metis child is not doing well, I am sure you know that it is more than the child; you have to look at the family unit. Besides believing in healthy living and all of that, we also believe in taking care of the family as a whole and in promoting healthy living not just for children but for families.
Eileen Mustus, Provincial FASD Coordinator, Métis Nation of Alberta: Thank you for having us come and give you information and talk with you about issues that our children face within the Métis Nation of Alberta and across the country.
The first part of my information is from our children's services department, which provides support services for off-settlement children and families throughout Alberta. Region 10 assists with the settlement children and families in Alberta.
Métis Nation's children's services are funded through Alberta's Ministry of Children's Services. There are over 743 Metis, 431 non-status Indians, and 341 unknown Aboriginal, for a total of 1,515 children in care throughout Alberta at this time.
The Métis Nation believes that there are many more members who have not been identified as Metis. One of our main points is that identity and connectedness to the communities are paramount and vital for the success of the children.
Children's Services and the Metis membership department within our organization are currently working on developing information sharing that will ensure that all Metis children in Alberta are accounted for. This work continues; there are still many cases that need to be worked on.
Métis Nation has six regional sectors which overlap ten children and family services authorities within Alberta. Métis Nation believes there needs to be more financial support to assist with the increasing numbers of Metis children in care and to address capacity to ensure that there are enough Metis social workers to work with Metis children and families.
The Métis Nation works closely with Métis Child and Family Services and the provincial committee to address pressing issues throughout the province. As I said, Métis Nation receives financial support from Alberta's Ministry of Children's Services. Métis Nation is looking at strengthening its relationship with all the children's services organizations by developing a memorandum of understanding. Also, we are examining having a provincial overarching agreement between Métis Nation of Alberta and the provincial Ministry of Children's Services.
The next part of my information is mostly from our project and from details I have come across since working with the Métis Nation and in the FASD project. The vision of the Métis Nation is to build collectively a strong Metis community, to ensure effective participation and to strive to achieve the mission by providing a framework for parties to work cooperatively and in partnership to develop and implement mutually acceptable methods of addressing the agreed needs and aspirations of the Metis people to preserve their dignity and culture.
We still have much work to do. Metis and Aboriginal children are not reaching post-secondary education or trade education levels. The Métis Nation is concerned about increasing the capacity of the communities to bring children along so that they are able to succeed in the education system.
Basic needs include fostering self-identity and support and respect for their culture. In order to succeed, Metis children continue to need to have that standard addressed and reinforced in many schools. That has to happen in all school, not only in the schools that cater to big cultural programs for Aboriginal or Metis children, like Prince Charles Elementary School in Edmonton.
As with physical abuse, mental abuse, including racism, attitudes, and bullying by other children or adults, should not be acceptable in the schools. We know that is covered very thoroughly in the rights report. There should be no tolerance of abuse in all schools and at all levels of service. Bullying in school is still quite an for our children.
Regarding the issue of there not being Metis children coming out of post-secondary or trade schools into the workforce, a young girl stood up at our annual assembly last summer and said that for some of our children, for some of her peer group, it is because they are being bullied and are not accepted. We need to infuse more understanding and acceptance at all educational levels.
Within our Metis fetal alcohol spectrum disorder project, we deliver awareness and promote FASD education in the communities and also in the schools. We are committed to engaging at least two schools in each region with workshops and presentations in FASD prevention. Also, we give workshops and presentations to professionals at any service, in schools, at health centres, in the justice system and so on.
In many service areas we get questions that show that people still have very little knowledge or current information and research about FASD and working with and educating children affected by FASD. All teachers and workers need to know the strategies on how to best reach and engage children and youth affected by FASD. Children affected by FASD are very vulnerable. There should be a standard in the various service education programs at post-secondary and higher levels of learning. People getting degrees should know about the impact of FASD on children and their families. Most degree programs should contain an FASD component.
The federal government and the Canadian people in general still need to make a better commitment to the children of the rest of the world to protect them from hunger, homelessness, ill health and sexual exploitation.
Within our communities, there is a cycle of poverty due in part to low educations levels. Lack of education is partly a result of parents' attitudes to education. Some parents' educational experiences were so bad that it is hard for them to value education for their children and to support their children's efforts in school, and that is part of what hampers children's success in school.
The Chairman: You gave us a lot of information. I come from Saskatchewan, where one of the difficulties is identifying the Metis people; of course, the court ruled that the community self-identifies. By the way, in Saskatchewan, Alberta is always pointed to as having got your act together.
What is the estimated population of Metis in Alberta? I know it fluctuates.
Ms. Hyndman: There are roughly 35,000 card carrying members. There are actually 67,000 Metis, and around 35,000 of them have come to our organization and filled out paperwork. Then there is on-settlement. There are eight settlements; approximately 8,000 to 10,000 Metis people live on settlement. But they are separate from us, so we have issues there too.
Senator Poy: This is a follow up to what Senator Andreychuk just mentioned. I am a bit confused. How do you actually separate a Metis person from an Aboriginal or First Nations? In my own limited experience, they are all of mixed races. You also mentioned that there are card carrying Metis and those who do not carry cards. How does one identify and differentiate them?
The Chairman: I will let the witnesses answer that. I had the good fortune to sit on the Aboriginal Committee. I think we can give you the background paper on how the Canadian government has identified three groups in the constitution and then how the Metis people self-identify since their identification is not based on percentages or bloodlines.
My point was that in Alberta the Metis people are more organized because of their history and the agreements they have signed, which was a long, legalistic issue.
Ms. Mustus: Speaking from my own perspective, the Metis have their own distinct culture, though it is similar to and overlaps the Aboriginal culture. The Metis are of Aboriginal and European decent. They are of combined cultures, but they still have their own unique culture going way back.
Senator Poy: Is there one language or are there many languages spoken in the Métis Nation?
Ms. Mustus: Mostly English is spoken. Many of the elders, the older people like myself, speak Michif.
Senator Poy: It was mentioned that one girl slipped through the crack and then committed suicide because she was not identified as a Metis. Could you please explain that? I did not quite understand how she slipped through the crack.
Ms. Hyndman: I would like to add a little more information as to how you identify as Metis in Alberta. You have to fill in your family tree, which needs to go back to the Red River Settlement, to Rupert's Land. You have to go back five generations. When you can do that, you give permission for family members to come and connect. One person has to do all the work, but usually that person enjoys it and he or she fills in the family tree. That is how we identify.
I was once asked how we open a Metis meeting, and I said, "Well, for starters, I am not going to put that on paper, because it is a government person asking." I thought, nice try. I will not write that down.
How it works is that you have to build relationships with the people that are at the meeting and find out if this Metis elder is practicing more of his Aboriginal spirituality or if she is more Catholic, because the culture at our office is very non-traditional, non-Aboriginal traditional. You do not see drums or feathers or that kind of thing. You will see sashes and fiddles and you will hear jigging music. Some Metis people often frown at that part of their heritage, which is a personal thing.
I always find it amazing, unique and wonderful that Metis people can be part of this broad spectrum and that at different parts of their life maybe they will honour a certain traditional part of their heritage and they will smudge and they will go to powwows. However, generally speaking, Metis people are more fiddles, the sashes and the Catholic faith.
I had a discussion with my director at the office this morning about that young girl. We wondered whether she could have gone to see the school counsellor. The Metis elder who told this story on Monday said that it was a psychologist. My assistant has children who fit under the status, so they can go to Indian and Northern Affairs Canada, but mom cannot because she is Metis. I presume that the young girl could not access the services that First Nations and treaty kids can because she is Metis and we do not have any health benefits.
I work on a lot of health issues in the office, so I get the calls asking whether Metis will start getting health benefits. I say that is a long ways away, if and when we do. I have also heard many Metis people say that we do not want what First Nations have anyway, because we do not want the dusty old ugly glasses at the back of the pharmacy that are on the list of benefits First Nations get. Metis people want to create their own wish list of what they can get when they start getting benefits.
Senator Poy: Do you have to be officially Metis to be able to access a certain service?
Ms. Hyndman: Yes. In our organization you have to have a card, and now with the issue of hunting, you absolutely have to have your tree done and have it approved and signed off by your president, and that allows you the hunting issue, which is another whole matter.
Ms. Mustus and I have gone to many meetings where the men talk about the right to hunt. We think that if you are dead, you will not be hunting for anything. If our babies continue to be born with FASD and if our families are losing feet and eyes and kidneys and everything to the damage from diabetes and from liquid sugar, then it does not matter if you can hunt.
I decided to change my thinking a little bit; I thought I should not be so harsh. I have said these words at meetings when the big bosses are there, and I see a little bit of a stern look and then they kind of nod: yes, you are right; if you are dead you are not hunting for anything.
However, looking at it from a broader or maybe more mature perspective, if you have rights, that helps your health. You can say, "Okay, I do not hunt, I am not going to ever hunt, but I have the right to hunt," and then you take care of the rest of your well-being.
Senator Poy: If a Metis child needs social services, does that child have to go specifically to a service that is only for Metis, or could he or she access services that are available to all other children in the province?
Ms. Hyndman: A Metis person has what any Albertan has, so yes, that child could access other services.
Senator Carstairs: I think the Metis people have made incredible strides. When I lived in Alberta in the mid-1960s to early 1970s, nobody identified as a Metis. When I went to Manitoba people denied their Metis heritage. They would rather not be Metis. Now when I drive through streets in Winnipeg, I see great big signs, a big billboard campaign, proud of Metis heritage and proud of the advancement that the Metis people have made.
For me, that was the first step, when Metis said they were Metis with pride in the same way that I said I was a Canadian of Irish and French extraction. That was a giant leap forward, but now we have to get them services. That is where it breaks down.
Senator Poy said they could access family and child services agencies, which is true, but those agencies are not culturally oriented towards the Metis people and they often have no comprehension of the history or experience of the Metis people. The workers have no training in Metis cultural tradition.
I was interested, Ms. Hyndman, that you said the Metis in Alberta were largely English speaking. In Manitoba the first language is either Michif or French, not English. Is that difference because of the traditions in Alberta and Manitoba?
Ms. Hyndman: Actually, besides working on almost all the health initiatives, I have the language funding. We do get funding for Michif initiatives. Michif is identified as French nouns and Cree verbs. I have met elders who say they speak Cree but not the real Cree. They are actually speaking Michif.
I hear a lot of French in the language of the elders from Lac La Biche, which is Region 1, and I hear a lot of Cree from the elders from Slave Lake, which is Region 5. The language is a great mix, but because it is so old and there are so many dialects and different communities, and so much mixing with Europeans having married Aboriginal women, sometimes there is Cree with a few borrowed words of French plunked in, and somebody will say that that is Michif. Who speaks true French nouns Cree verbs anymore, I am not sure. I know that in Manitoba they are very, very strong in that aspect and they work keenly on Michif.
In Alberta, we are not as strong. It is a struggle to revive a dying language. We are developing a documentary called The Keepers of Michif, which will probably be only about 15 minutes. I think it will be of real value, especially down the road, because Michif is a dying language, and we are doing our best to keep it alive.
Ms. Mustus is right, English is very predominant, but there are the elders who speak Michif. Cree is also spoken a lot because it is an easier language and it is strong and alive. There are little children in schools learning to speak Cree. Michif is much harder to keep going.
Senator Carstairs: The other question I have has to do with fetal alcohol syndrome. How many young Metis people in your community have been identified as having fetal alcohol syndrome? What kind of programming do you now have in place in order to help those kids? I ask that question in light of research I read this week indicating that if have you intensive programs in the first two or three years life, those children can in fact be integrated and have the same skill level as children not born with fetal alcohol syndrome.
Ms. Mustus: We do not have a number that have been identified. I think in general, with the rest of the population, there is not a set number in any of the regions or in the Aboriginal community versus the Metis community. There needs to be more assessment and testing done in the regions, not just in urban areas but in rural areas as well, and of course, supports to go with the testing.
We are at the stage where we are bringing forward awareness and trying to communicate to parents the need for children to have supports put in place for them if there is a question that they could be affected by FASD. Hopefully in the next five years, or less than five years, we will have more kids connected to an assessment and testing, and of course, interventions put in place for them.
Senator Carstairs: My understanding is that there are now tests available that can identify them within the first few weeks of life and that we can now provide supports right then, and that that will have a significant impact on their overall development.
Have you worked at all with the provincial health department to ensure that all children, not just Metis and Aboriginal children, are tested within the first six weeks of life to ensure that we know who the FAS kids are so that we can get them the help they need?
Ms. Mustus: Our health and diagnostic centres are not yet at the level where they can have that option for parents to access those services. If that was the case, that would be wonderful.
The Chairman: I think I will ask our researchers, because in Saskatchewan we are doing it at birth in the hospitals. The question is, though, is whether we are doing it in all the hospitals where it is really needed. I understand Alberta has started a similar kind of program. I think we will ask our researcher to see whether all children are tested at birth and whether that is throughout the province or only in selected hospitals at the moment. Usually things like that happen in Regina, and that is not where they are needed most.
Ms. Hyndman: I wanted to mention that Ms. Mustus has done an incredible amount of work reducing the shame and the stigma that is attached to FASD. I am not sure the Metis communities are quite ready for that necessarily, but she has brought a wonderful production that the Métis Nation of Alberta created, Faith Like a Child.
The Lakeland Centre for FASD was very impressed when they screened that production because they found that, unlike Alberta Health and Wellness posters and publications, there was no shame attached to it.
Faith Like a Child so well done. It shows a couple of grandparents talking about their grandchildren which they have raised. That is very typical in the Aboriginal community, not just First Nations. Grandparents raise the children.
We are not saying to mothers that you drank when you were pregnant, and if did you, that you are a bad person. This is good to hear. I did not know about the intensive testing, but that is encouraging to hear, because some young people that we know are surprising us with their skills and abilities even though they have been labelled with FASD.
I do know that in Alberta, Dr. Lynden Crowshoe and Dr. Margaret Clarke work quite keenly on FASD and diagnostics.
Senator Lovelace Nicholas: You mentioned a Metis community. Are you talking about a land base here in Edmonton? Do Metis people reside in cities?
Ms. Mustus: That would be the Metis community in general throughout Alberta. Not specific geographic communities, just all the Metis community, the Metis people.
Senator Lovelace Nicholas: You are not talking about a land base like a reserve?
Ms. Mustus: No.
Senator Tardif: Are there benefits attached to being a Metis holder of a card for attendance at college, universities, trade schools? Are there benefits that come with being a card-carrying Metis?
Ms. Mustus: There could be benefits if students are eligible for some of the bursaries or grants that the Métis Nation of Alberta administers or have under their programs. I do not think they have the same rights as Aboriginal people do, like treaty people.
Senator Tardif: That is kind of what I was hinting at. What are the distinctions of being the Metis cardholder and then being First Nations?
The Chairman: I know they do not have those benefits elsewhere unless they particularly contracted for some service. There are many agreements in Alberta between the province and the Metis, and they are specific to Alberta.
Senator Tardif: Yes, they are.
Ms. Hyndman: On the bottom of page 1 of my document our projects and initiatives are listed. Our labour market development unit provides funding for the last year of a program, whether it is university degree or a diploma program or certificate. They provide funding for training when you meet the criteria.
Because there is a push for an increase in Aboriginal health human resources, there is a push for funding those trades. Currently our labour market development program is paying for education for three doctors and a dentist. Now, we are not at the stage where we can pay their whole way, but that is what we are working towards.
Senator Tardif: When I was at the University of Alberta, for example, we would hold spots in the medical school for First Nations. Does that include Metis as well?
Ms. Hyndman: I think it does. There are spots for Metis. They have to get in by passing all the exams.
Senator Tardif: I agree, but was it targeted?
Ms. Hyndman: There are targeted Metis seats, yes.
Senator Tardif: You are saying that the Labour Council of Alberta is paying for the last years?
Ms. Hyndman: Our labour market development unit, yes.
Senator Tardif: You would have to be card carrying, though. There is a difference then between the 35,000 Metis and the 67,000 Metis?
Ms. Hyndman: Absolutely. I was at the same meeting on Monday where someone from Capital Health said, "Well, where do the non-status go? Can we bring them on?" And I said, "That is very risky. It is very dangerous because it is very political."
I suggested building a relationship with the Friendship Centres because that is where all the Aboriginal people go for help who do not fit into any of the services or programs.
Senator Tardif: Why would somebody not self-identify? Is it because of the stigma in the past of being considered a Metis?
Ms. Hyndman: It is interesting that you ask that. I had a discussion about some Aboriginal people who choose to not honour — I do not know if honour is the right word — but they choose not to live that life, so they just engage completely and fully in the western lifestyle and they pretend that that is not even part of their heritage.
I do not think you can ever escape your heritage or your blood and your roots or where you are from.
There is the issue of shame and stigma, and sometimes there are rifts between the families. I think sometimes family members simply decide they want nothing to do with their roots because of conflict or rifts. That is not an Aboriginal or Metis issue.
Senator Tardif: That goes across all cultures.
I want to get back to the question of post-secondary education. By that, I mean trade, skills, whatever. Is private industry coming into play? Because of the labour shortage in Alberta, you would think that more and more private industry would have an interest in bringing up the scales and then working directly with perhaps the Metis population on this.
Ms. Hyndman: As far as I know, in Fort McMurray and in communities like Conklin in Region 1, they are working closely with industry. They save spots and they train Metis people. The Metis are heavily involved in the trades in the oil and gas industry. There are partnerships with them as well.
Ms. Mustus: There are also spots within the policing field and in other areas.
Senator Tardif: Are there dedicated spots for Metis in education and teacher training? Do you have many Metis teachers?
Ms. Mustus: There are many Metis teachers. I am not sure of the numbers or whether there are Metis spots in the education field.
Ms. Hyndman: A friend of mine is a Metis teacher. I am not sure how many Metis teachers there are, but it is hard to get a job in Alberta as a teacher. You have to get on the sub list and then try to wiggle your way in that way.
There is an increasing demand for presentations on the Metis — are they land based, are they off settlement, all that kind of thing. The Louis Riel story is very captivating. We try to bring bannock and jam when we do presentations. We hold our audience and then we feed them afterwards. There is increasing request for presentations and desire to learn more about the Metis culture.
The Chairman: We hear often, whether it is true or not, about the influx into Alberta. Have the Metis gravitated from Saskatchewan and Manitoba into Alberta?
Ms. Hyndman: I absolutely think they have. I am not sure whether that is because Metis in Alberta get more. Saskatchewan is in a bad way right now; they are working out some problems. Many Metis I have met from Manitoba are extremely entrenched in Manitoba, as the Albertans are in Alberta.
I think probably more are coming from Saskatchewan, partly because of the boom. Five years ago our office had two membership clerks, now we have a staff of 25 in our head office. Our membership registry has increased enormously. In this document I changed the number or Metis from 19,000 to 35,000. The number is maybe closer to 39,000. There has been a large influx of Metis into Alberta, and they come here for a mix of reasons.
Senator Munson: Regarding fetal alcohol syndrome, what happens if nothing is done for Metis children because we do not have the minimum standards that you mentioned for teachers and health professionals? It is an incredibly sad story.
Ms. Mustus: As you say, it could be a sad story. What happens depends a lot on the supports that the children get within their family as well as in the school system.
Historically, the family was able to bring along a kid and have a kid that was fairly independent and self-reliant and able to have a livelihood, but that is not the case nowadays. Often, as I said earlier, they fall through the cracks and we hope they do not end up like the girl Ms. Hyndman talked about.
When we do our presentations, there are two main points we try to get across to the communities and to the professionals. First, we try to provide the awareness and the knowledge needed to decrease the number of children being born with FASD. Second, we also talk about eliminating the high-risk lifestyles that youth and young adults go to if they do not have the supports in place, which lead them to incarceration or the streets.
Senator Munson: Is one of the difficulties that Metis children and families are everywhere? You do not necessarily know your whole base. You know part of it — the inner city children and families. On reserves, on the other hand, sometimes you put together a program because there is a group together. In my experience as a former reporter doing stories on this subject, the cry has been there but people have not listened.
Ms. Mustus: Right. That is a unique aspect of the services within the Metis programs. For our FASD workshops on prevention and promotions, we go to the main centres. Of course, we do not say only Metis can come or only certain people. We deliver to two or three classrooms at a time with all cultures present. The same is true in the smaller communities where we talk to all people. However, it is hard to reach all the Metis.
Senator Munson: I have a general closing question on the United Nations Convention on the Right of the Child. If Canada implemented the convention as opposed to ratifying it, how would that help the lives of Metis children?
Ms. Hyndman: I think there would be fewer sad stories. The jurisdictional issues are still a problem. Somehow, the implementing the convention would kind of say, "Okay, you guys, sort that out later." Whey they are not getting along, I get my kids to take a bucket and wash a wall until they are friends again; they can sort out their difficulties later. You implement the convention and you do not worry about whether you were born on settlement, off settlement, in Alberta, in Manitoba, in Saskatchewan; it does not matter. You are a Metis child, you are Canadian.
I think that would automatically cover more people than are currently covered. There will be fewer sad stories and we will run into fewer issues trying to target a project specifically to Metis. We do not target Metis settlement people, because they have their land base, but Métis Nation of Alberta has to cover the whole province. How will I do this project for the whole province, not just urban, not just rural, not just Edmonton, not just Calgary, but the whole province?
I find it interesting and ironic that Metis are called or have been called the forgotten people, but we are the most generous, because we do not say, "Let's see you jig. If you cannot jig, you are out of here. If you are not Metis, you do not get to benefit from this."
We welcome everybody. We spearhead projects and we are proud of owning them, and that is how we cover as many people as we can. The convention is almost the same thing. If you can spearhead this and implement this, then more Metis children will be covered just because they are part of the whole big group.
Ms. Mustus: We fully support the committee work on human rights for children and we hope there is more work to be done that can address the issues that do not seem to come to the forefront.
The Chairman: You have talked about fetal alcohol syndrome and some other health problems. Do you face the issue of exploitation of young people within the Metis as we have heard in both Aboriginal and non-Aboriginal communities? Also, do you have a problem with gangs?
Ms. Mustus: Within the addictions field, where I work closely at times, we do hear from many people in the sex trade, whether Metis or from the Aboriginal community. Again, those people are not going to self-identify and say which side they fall on.
The Chairman: That was my point, that if they belong to a First Nations community the system will identify them if they are before the courts or with the police. What happens to the Metis, because they have to self-identify? You are saying they are there but it is difficult to know?
Ms. Mustus: It is difficult to know. Sometimes I think that is one reason why they would not self-identify. They end up being labeled and then lost in the system, or lost in the shuffle.
The Chairman: Thank you very much for coming and for sharing your work. The Metis community is noted as being unique here. Thank you for putting a face to it and telling us about your programs. Thank you also for your support of our work, and hopefully we hear your voices through our work.
The committee adjourned.