SCYR Committee Meeting

SUB-COMMITTEE ON CHILDREN AND YOUTH AT RISK OF THE STANDING COMMITTEE ON HUMAN RESOURCES DEVELOPMENT AND THE STATUS OF PERSONS WITH DISABILITIES

SOUS-COMITÉ DES ENFANTS ET JEUNES À RISQUE DU COMITÉ PERMANENT DU DÉVELOPPEMENT DES RESSOURCES HUMAINES ET DE LA CONDITION DES PERSONNES HANDICAPÉES

EVIDENCE

[Recorded by Electronic Apparatus]

Wednesday, May 30, 2001

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[English]

The Co-Chair (Mr. John Godfrey (Don Valley West, Lib.)): Welcome to this almost annual joint meeting of the two subcommittees of the Standing Committee on Human Resources Development and the Status of Persons with Disabilities—the subcommittee on children and youth at risk, which I chair, and the subcommittee on the status of persons with disabilities, which is chaired by my colleague Dr. Carolyn Bennett.

Before we get into the business at hand, I thought I would give members a slight explanation of a couple of business matters, if the witnesses would bear with us.

As you will recall, both subcommittees have been asked by the chairman of the main committee, Mr. Adams, to submit reports to the main committee about both the current and past activities of the two subcommittees and their future direction. After thinking about this, we decided the two subcommittees had so much in common that we would like to submit, basically, a joint report. I think we have to emphasize that there is no deadline on this report, although it would be, in an ideal world, nice to have it tabled and through the House before we rise for the summer.

There has been fairly preliminary discussion, certainly in my subcommittee and in the other subcommittee. What we were proposing to do today between 5 p.m. and 5:30 p.m., after this round table has ended, is to have the researchers take us through the elements of the report.

You will have received notice of a potential meeting tomorrow. We had to do this in advance. This is only in case, by 5:30 p.m. today, we decide we should, or could, or might meet tomorrow.

Madame Guay.

[Translation]

Ms. Monique Guay (Laurentides, BQ): Mr. Chairman, as I was saying earlier, I'm opposed to the idea of meeting between 1 p.m. and 3 p.m. because we have duties to attend to in the House. There's the matter of attending Question Period. I wouldn't want us to set a precedent by sitting during Question Period. We have responsibilities toward our respective parties. If we need to have a meeting, I think you need to schedule it at some other time.

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The Joint Chair (Mr. John Godfrey): Thank you for that bit of information. I believe there's an error in the notice. In theory, the meeting would be between 1 p.m. and 2 p.m., not 3 p.m. Obviously, a committee cannot sit during Question Period. Nevertheless, we had to reserve the room and give notice in case... We were unaware of all of the committee members' obligations. Quite possibly, by today's end, we may be able to decide that tomorrow, this isn't possible. However, we had to give advance notice.

[English]

So we will be in a better position at 5:30 p.m. to figure out where we go from here. I apologize to members for any confusion or alarm that has been created, as well as for the fact that even translated copies of this got held up in translation through various errors. We haven't given people much advance notice—we're aware of that. So we'll just take advantage, between 5 p.m. and 5:30 p.m., to see where we are.

The Co-Chair (Ms. Carolyn Bennett (St. Paul's, Lib.)): Just to explain, it's because our subcommittee is meeting tomorrow from 11 a.m. to 1 p.m. with Minister Stewart. The main committee meets from 11 a.m. to 1 p.m. So if it seemed that a half an hour would do the job, we could all go in a room together and decide. It was just a matter of making sure we had a place to do that if we chose to do so today.

[Translation]

The Joint Chair (Mr. John Godfrey): Ms. Guay.

Ms. Monique Guay: Mr. Chairman, Madam Chair, we at least need time to familiarize ourselves with the report, to propose changes and to negotiate. That's goes for everyone. I think you're putting pressure on us and I do not like to be rushed. I like to take my time to ensure that everything is in place and that everyone is in agreement. If we must submit a dissenting report, we need time to prepare.

I don't want to feel rushed. If we can't possibly get to this before the end of the session, then it will have to wait until the fall. However, I'd like enough time to familiarize myself with the report's contents. Half an hour, or even one hour, just isn't enough time. We need time to familiarize ourselves with the findings and to make the necessary changes.

[English]

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

Mr. Roy Bailey (Souris—Moose Mountain, Canadian Alliance): Did you say the minister is meeting tomorrow with the other group?

The Co-Chair (Ms. Carolyn Bennett): With the subcommittee on disabilities.

Mr. Roy Bailey: Right. Two ministers?

The Co-Chair (Mr. John Godfrey): Just the one.

Mr. Roy Bailey: Okay.

The Co-Chair (Ms. Carolyn Bennett): And Ms. Blondin-Andrew.

The Co-Chair (Mr. John Godfrey): Sorry, apparently Ethel Blondin-Andrew is coming.

Mr. Roy Bailey: Yes.

The Co-Chair (Mr. John Godfrey): So there's Minister Stewart and Minister Blondin-Andrew.

Mr. Roy Bailey: That's the call I had.

The Co-Chair (Mr. John Godfrey): With that housekeeping item explained, I hope, we now turn to the main business of this afternoon.

On behalf of the subcommittee on children and youth at risk, welcome. I'm going to turn things over to Dr. Bennett to do all the work.

The Co-Chair (Ms. Carolyn Bennett): I don't know about that.

I believe you've decided the order amongst yourselves, which is fantastic. As you know, this annual meeting is to make sure that any children's agenda includes children with disabilities and that any disabilities agenda includes children. So we're thrilled that you're here to help us make sure that happens.

We will begin with Diane Richler, from the Canadian Association for Community Living.

Ms. Diane Richler (Executive Vice-President, Canadian Association for Community Living): Hello to all the members of the committee, and thank you very much for welcoming us here.

As many of you know, our association, the Canadian Association for Community Living, has had many opportunities to present to each of your committees, so I'm not going to take very much time today. We decided to put our presentation in writing, and you have that before you. I'll just draw your attention to what we've included in your packages.

First is a document called Our Lives, Our Voices: Families Talk About Lives Worth Living. When I appeared before the disabilities subcommittee last time, I talked a little bit about the feeling that has been expressed to us from families across the country about the way in which many families feel their sons and daughters are devalued in their communities. So we've gathered some stories from families to express, in the family's own words, the joy that families experience having among them family members who have disabilities.

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Also linked to that, we are in Ottawa because there are meetings of our Ontario Association for Community Living, as well as the Canadian Association for Community Living. We've decided to join in solidarity and march together to Parliament Hill tomorrow, to talk about the fact that we consider the lives of people with disabilities are lives worth living. We would invite any of you who would like to join us. We'll be leaving the Crowne Plaza at 5 p.m. and marching to Parliament Hill. We hope the Canadian public will be open to our message.

The last thing I'll draw your attention to in the booklet is our submission to these joint committees on building a national system of family support, of shared responsibility. I will not speak to that today, but we'll give you time to read it. We'd be happy to talk to you about it afterwards.

We've been very fortunate, over the last three years, to receive support from HRDC for a series of projects that allowed us to consult with families across the country about issues affecting families that include children with disabilities. The messages we heard from those families have had a transformational impact on our association, first, because of the recognition of how vulnerable families felt; second, because of how clearly families articulated the need they had for support and the role they saw for the federal government in helping to meet that need; and last, because of the need they saw to network more among the small networks of families that were forming across the country. So this meeting today is an opportunity for many of those groups, with whom we've consulted across the country, to come together and express their points of view to you.

I'll just briefly introduce the people who are at the table. They include Michael Burke-Gaffney, from Hamilton, representing the Hamilton Family Network; Gloria Mahussier, from Saskatchewan; Barb Horner, from Nova Scotia; Lucie Charron, du Québec; and Jo Dickey, from British Columbia. Without further ado, I will turn it back to the chair.

The Co-Chair (Ms. Carolyn Bennett): Okay, and I will turn it to Michael Burke-Gaffney.

Mr. Michael Burke-Gaffney (Board Member, Hamilton Family Network): Thank you very much.

Honourable members, my name is Mike Burke-Gaffney. I am from Dundas, Ontario, near Hamilton. With my wife, Jan, we have four children, two of whom have intellectual disabilities. Our third son, Jesse, was born in 1983. At the time, we lived in a small town in a rural area north of Toronto. I commuted 150 kilometres round trip each day to my job in the city, and Jan was a full-time mom to our older boys, who were five and four at the time. Life was turning out pretty much the way we had always dreamed. Jesse was born two months premature and weighed less than four pounds. He stayed in hospital a month before coming home. Only then did the doctors tell us that our little boy had Down's syndrome.

We thought we were the only ones this had ever happened to. We felt completely alone. We asked each other, why us? What had we done wrong. Was it the town water supply? Was it chemicals from the farmers' fields all around us? In fact, the answer was we had no personal experience with disability in our lives. It could happen to anyone, and does. But we didn't know that then.

Growing up in Winnipeg, I had an older cousin, Mary, who was intellectually handicapped—retarded, in the vernacular of the day. She lived at home with her large Irish Catholic family, and I guess went to a special school somewhere in the city, because I knew she never went to school with the rest of us. I didn't go to school with any disabled kids, as a matter of fact. Growing up on armed forces bases across Canada and overseas, my wife Jan had no experience with disability either.

So there we were, the two of us knowing virtually nothing and no one around us knowing anything more. Jesse's birth was like a bolt of lightening had descended upon our family.

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Bit by bit, the community came to our aid. We discovered there was an elderly couple down the street who had an adult son with an intellectual handicap, who lived in their dark old house with them. We met a couple who lived outside town who had a young school-aged daughter, also with Down's syndrome. They knew what we were going through and made us feel a little less alone.

A public health nurse contacted us and began visiting our home to teach us infant stimulation exercises for Jesse. Through her, we met other parents in the large rural county, and we helped found the first parents' support group.

Soon after, we adopted a beautiful baby with Down's syndrome—a girl to go with our three boys. It brought a kind of symmetry to our family. Our oldest son was adopted when we thought we couldn't have children. Our second son was born less than a year later—surprise. So we had two adopted kids, two biological, and two with disabilities. The two of us, Jan and I, were ready now to handle anything.

We had to move twice, in fact, to find a school system where Jesse and then Emily would be included with all their classmates. We have joined groups, such as the Association for Community Living, at the local and provincial levels. Jan co-founded the Hamilton Family Network in 1998, taking the concept of a parent support group to a new level of expertise and advocacy.

Tomorrow is Jesse's 18th birthday. Later this year, he will graduate from Grade 12 at St. Mary's High School in Hamilton, with many friends he's gone to school with since kindergarten. Emily is in Grade 9 and following in all of her brother's footsteps.

Jesse will soon begin to collect $700 a month from the Ontario Disability Support Program. We continue to receive the disability credit in my income tax for both kids. Finally, we receive five hours of special services at home—respite care each week—for each of Jesse and Emily, which allows them to go out with a worker on Saturday afternoons and lets Jan and me get some errands done.

Faced with Jesse leaving school, we must now redouble our efforts to help him find meaningful work in our community. In some ways, it's as if we have to start all over again. For many parents across Canada, and many we know personally in our own community, where their kids aren't even allowed to go to school, every day is like starting all over again. Many of the gains we've seen in Jesse's lifetime, in education and the workplace, are being rolled back.

In 1983, Jan and I thought we were alone. Today we know there are thousands of families like us across the country who are doing more than cope with disability; they are determined to make meaningful lives for themselves and their families.

To make this happen, we need the support of our communities, not the apathy or sometimes outright antagonism we frequently experience. We need leadership that begins at the very top in Ottawa.

Please invest in families. Make inclusion the norm in school and in community life. People with disabilities, their families, and Canadian society as a whole will all benefit. Thank you.

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

Now we'll hear from Gloria.

Ms. Gloria Mahussier (Board Member, Saskatchewan Family Network): I was okay until he started talking.

This is my son, Travis. My family lives in Prince Albert, Saskatchewan. Although what I will say today is my personal story, it's important for you to know that what I share is happening throughout our whole province in Saskatchewan.

My 13-year-old son, Travis, has a diagnosis of Williams syndrome. As advocates for our son, we've come to view the education and health system in a completely different manner than we did for our daughter, who's a typical child.

We've come to realize there are very few supports for children who have intellectual disabilities. Travis was allowed into school last year on September 27. When I compiled this data, the regular school population had enjoyed 582 hours of school. Travis' school time had been limited to 164 hours. Why? Because it takes a lot of patience, tolerance, and hard labour to work with a child with an intellectual or physical disability. It's far easier to send children home, lock them up in a back room, or just segregate them from the regular school population than it is to accept someone like Travis as the little person he is.

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As parents, all we want is to have Travis included with his peers and to receive a meaningful education, so that he can grow up and contribute, as an adult, to our society and to our community of Prince Albert. Through this journey, we've discovered that our attitudes and beliefs are really different from the attitudes and beliefs of the education system. Our definition of an inclusive environment definitely differs from that of the policy-makers in our province.

If Travis was included at school, to us as parents that would mean he would sit at a desk in a regular classroom, with the same textbooks as his classmates, and the teacher and TA would modify his school work to his level of learning. In reality, Travis has a desk in the room, but it's at the back, and sometimes behind a divider. All his work is completely different from his classmates'. So when he's in the classroom, he feels like he doesn't belong. He demonstrates some kind of inappropriate behaviour that gets him out of the situation: I get a call, and he's sent home. It's absolutely a question of morality, because an excluded child can quickly become also a devalued child.

Travis' school attendance is sporadic, so we have 24-hour respite care for our son. All our family lives in another province, so we rely on our friends to provide that service for us in Prince Albert. However, we don't ask them very often, so as not to destroy those friendships.

Mike and I have parental burnout, so thank goodness we found the Saskatchewan Family Network. I can't begin to tell you how much the network has helped our family stay healthy. Some days it gives me the strength to carry on. They're such a wonderful support.

A voice: Take a moment.

Ms. Gloria Mahussier: Thank you. I'm not used to this.

I'm not able to work outside the home any longer. I'm a teacher, or I used to be—I was never like this in front of my class, believe me. But with the demands the school system puts on our family, who would hire me? I can't depend on Travis to be at school all day. Even if the school did allow him to be in school all day, in Prince Albert there are no day care facilities that would take a 13-year-old child. This type of situation is even more desperate in rural Saskatchewan.

Travis requires direct speech therapy and occupational therapy. As the health and school systems refuse to pay for these services, we've hired a private speech pathologist to come into our home twice a week for $70 an hour. We cancelled the OT because we can't afford it—we're a one-income family.

This is hard for us, but not as hard as it is for the single parents and foster parents I know in Prince Albert and in rural Saskatchewan. Those parents don't even have the option of hiring privately, as the professionals just aren't available. These services have long waiting lists, and families have to travel to the larger centres for them. Many of my friends cannot afford to do that.

In our family, it's understood that I'll never return to the workforce, and our savings are being spent on these services for our son. When we started on this journey 13 years ago, I never imagined that our son would not be entitled to these services. We believed we lived in a just society in Canada.

I guess if I could make a request for one result to come out of these subcommittee hearings, I would ask that you please listen to the desperate, unheard voices I bring to you today from Saskatchewan.

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Thank you very much—and I'm so happy this is over.

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

Ms. Barb Horner (Family Support Facilitator, Family Support Program, Halifax Association for Community Living): I'm here to talk about my daughter, Mallory. I have two children: my son Josh is 13 and my daughter Mallory is 16. I'm extremely passionate about Mallory. She has incredible spirit, determination, and courage, and she's funny, headstrong, and delightful.

Throughout Mallory's life, she has been our teacher. She has taught us about patience, acceptance, perseverance, unconditional love, ability, respect, dignity, and the critical need to value human life. My son Josh taught me, very early on, that Mallory needed to have equal opportunities, the same as him. I watch him sail through life, and I know how difficult it is for Mallory.

During the last 16 years we have faced many challenges. Our role as Mallory's parents has been extremely daunting at times. There have not been many times over the last 16 years when I've felt safe letting my guard down, because every aspect of Mallory's life has been devalued.

Therefore, as parents, we have needed to learn to become very effective advocates. We have multiple roles in her life: we're doctor, nurse, physiotherapist, occupational therapist. We have a long list of medical professionals in our lives as well.

We've also had to make incredible decisions throughout Mallory's life about medical interventions such as inserting a g-tube, so she would get more nutrition; such as orthopedic surgeries, to help her legs; and finally, to have rods inserted in her spine to help straighten her scoliosis. All these decisions were extremely difficult for us to make, and they're a horrendous responsibility for any parent. Parents should not have to make decisions such as these on their own or in isolation.

For a family like ours, with a child with Mallory's needs, family support is critical for our long-term health and well-being. I want to describe what support our family needs. Both my partner and I work full-time, and it has been a long haul to get us to this point. We both need to work full-time, because we moved to a new home two years ago to better accommodate Mallory's physical needs.

Therefore, I need support after school. As Gloria mentioned, when children with needs reach their teenage years, typical child care situations are no longer appropriate for them, nor do they exist. I need support in my home, but not a babysitter. I need someone who can come into my life and assist Mallory in numerous ways: provide stimulating experiences, meet her medical needs, and offer social opportunities. It is not typical for 16-year-old children to spend every moment with their families.

I also need respite, which is time away from my caregiving role. I need time to spend with my son, and my husband and I need time as a couple. Mallory does go to a respite apartment one weekend a month. This is the only time we feel we can totally let our hair down just a little bit, for two overnights.

But I need both these kinds of supports, not one or the other. Mallory's physical size is now becoming a barrier—she weighs 100 pounds. Our province does not have financial assistance programs for renovating homes, and because of our combined income, we wouldn't qualify for any programs that do exist. But we have thousands of dollars of renovations to do in our home to make it fully accessible to Mallory.

These costs are above and beyond the other everyday costs for Mallory, such as seizure medications, wheelchairs, diapers, and so on. Nova Scotia has a children's in-home support program, funded through the Department of Community Services, but this too is income-tested. So even if you have a child with significant needs like Mallory's, if your income exceeds, you do not qualify.

We have always attempted to maintain optimism for Mallory's future. As a family, we've worked extremely hard to build a wonderful support network around us, who care about Mallory and assist us with her care.

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I really don't want to be Mallory's caregiver any more; I just want to be her mother. However, recently in Nova Scotia, we've experienced cuts to our adult funding program. When Mallory turns 19, she will be classified according to her needs. We may lose the incredible support system our family has around us, and Mallory may be deemed suitable for a nursing care home. That is unacceptable to us as a family; we want Mallory to live at home as long as she can.

In Nova Scotia right now, families with adult children are being turned away. They're not allowed to plan for their children's future, and they're told that there are no opportunities any more for such planning, or for respite opportunities.

This terrifies me. It tells me that my caregiving role and the commitment we have made as families, continues to be devalued, minimized, and trivialized. The chance to relax and enjoy life never really comes, because there's always an issue we have to deal with.

We will always need support for Mallory—always. She's one of the 3% of our population of children who will always need significant supports. As a family, we accept that; we don't have a problem with that. But we need support in order for her to remain with us. Our role as family members, the role we play, should be validated and respected. We should have the right to plan for our child's future with hope and enthusiasm, rather than living in fear of what's to come.

For the last three years I've been involved with a community network of families. I work with a family support program, and every day I support families who experience constant barriers, battles, and discrimination within the education system, community services, etc. This must change. It is no longer acceptable. Parents cannot continue to be penalized, or families will continue to be at risk of falling apart.

In closing, I must end on a positive note. Mallory is a true joy to us. We treasure her. It is all the things she cannot do that make her an extraordinary person. She receives such joy from her life. Even though she does not speak in words, she has no difficulty communicating her needs to us. During her many surgeries, she could have simply given up, but she chose to live and to fight for her life every time. Despite social perceptions, Mallory lives her life full of love, support, friends, and family. Despite her many challenges, she wakes up every day with a smile on her face.

Families like mine need and deserve support. We look forward to your support.

Thank you.

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

Lucie Charron.

[Translation]

Ms. Lucie Charron (President, Association pour l'intégration communautaire de l'Outaouais): Ladies and gentlemen, I was delighted and eager to join with colleagues and parents from other provincial associations and to share our concerns with the committee.

Like most of you, I have the good fortune of being a parent. I have four children, including a 13-year-old son, Alexandre, who has a learning disability.

Alexandre was born with special needs. Being a parent is a challenging experience. When Alexandre was born, we weren't prepared, but we accepted the challenge and began our frantic search for the services we needed.

I recall the sleepless nights trying to give Alexandre his bottle, the weeks he spent in the hospital, my inability to ease his pain and suffering. Like many women, I had to reconcile my family life and the needs of my child. I quit my job to become a mother, doctor and occasional psychologist and occcupational and speech therapist.

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My career was taking off, but the needs of my child came first. We were at a lost as to how to even begin making our way through the maze of health and social services. Nevertheless, we held firm to the belief that Alexandre must take his rightful place in the community like any other individual.

Certainly, it isn't always easy being a parent. It's even harder not having resources geared to the needs of families and children. Yet, we never give up and continue to fight because we are secure in the knowledge that our demands are legitimate and that our child is entitled to the same services as other children and we, as a family, to the same services as other families receive.

However, what of the needs of other family members? When parents, even when well-intentioned, spend so much time with one child, the remaining siblings are forced to take somewhat of a back seat.

Unfortunately, even after being involved for so many years, I realize that we are still encountering the same struggles and facing the same concerns as we did 40 years ago. What I heard from the people who spoke before me represents a mere drop in the bucket. Yet, this is the year 2001. With the dawn of a new millennium, it is high time for some positive changes.

In addition to my parenting duties, I am the President of the Association pour l'intégration communautaire de l'Outaouais, an organization that works to defend and promote the rights of persons involved directly with family and child services. The Association is committed to ensuring that each person has the opportunity to be a full and productive member of our diverse society.

When will we have access to services geared to our specific needs? Quebec has always been perceived as a province that provides an adequate level of services. Why then was I forced to turn to a privately operated speech therapy clinic for help? The waiting list for services was several years long and certain priorities had been established. When it comes to our children, what do priorities have to do with learning and quality of life? Who can explain to me why it is that since my child started going to school, every year I must push hard to have him follow his age group, receive assistance from a teacher's aid and ensure that he is integrated into the regular classroom, not segregated in a special education class?

You may think that my situation is unusual, but I don't believe it is. For the past two years or so, a working group has been focusing on formulating a provincial policy on mental impairment. The policy is slated to come into force next June 5. Policies like this are designed to ease our burden and to improve service planning. When there are no problems looming on the horizon, we generally do not see policies of this nature.

If I could wish for one thing, it would be that our organization and its 150 member families work together - because they truly have people's interests at heart - to ensure access to a diverse range of services geared to the real need of families and children. These services include speech therapy, occupational therapy and special educators who are familiar with our children's needs. Families also need some relief, because if parents are exhausted, burned out and isolated, then the fate of their children will rest in the hands of government and social services networks.

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Finally, it is our fervent hope that respect and quality of life will be the hallmark of our children's lives and that these lives not be dictated to by priorities and financial considerations.

I genuinely hope that I, along with the other parents in attendance and the members of our organization, have painted for you a fairly accurate picture of the difficulties we face on a day-to-day basis.

Thank you.

[English]

The Co-Chair (Ms. Carolyn Bennett): Merci. Jo Dickey from Family Link.

Ms. Jo Dickey (Board Member, Family Link): Good afternoon, and thank you very much for your invitation to be here today.

I have a son who has a disability. I have two sons and the younger one has a disability. As you can tell from the top of my head, he's not that young any more. He's not a child; he's an adult.

But I do want to tell you a bit of a story, because I think it's indicative of what's been happening over the last few years. He went to school, although it was a segregated school, and he had friends. It would have been much better if they had been integrated, but in those days they didn't do that. We weren't smart enough to hammer down their doors and tell them they had to take these children. We instead decided to start schools ourselves. Looking back, this was a mistake. However, we did that. At least it showed people they could be in another environment for a few hours a day.

What happened was somebody in June decided that since he'd been going to school from the time he was 3 and he was 13 then, to give him an IQ test. Well, that's really interesting, because this gentleman doesn't talk—never has talked. He does his conversation through behaviour and smiles and all of the other bodily things you can do to communicate.

In September we took him back to school—he loved school—and he had been moved back with the children, because he didn't have enough IQ rating to stay with the kids he had gone to school with. He ended up at home with me for six months for 24 hours a day.

I went to the ministry and asked for help. We presented a bit of a budget and said we just wanted to get Drew out of the house and away from me mostly, because he was frustrated. He didn't think much of my company at 13. We just wanted to get somebody to take him out and do something with him.

I remember the budget well. It was for the year and it was $7,800. I was ill at the time. But the only option they would give us was the institution. We kept him home. He started to get worse and worse. Because of his frustration he was becoming very violent. He ended up going to the mental health... He was the only child in Riverview, which is our mental health institution. He went in the middle of the night, because they told us that if we didn't do that, they would probably have to put him in jail. That was our option.

I'm just telling you this, because I remember going into the superintendent and saying to her “This is the last place in the world I want my child, and if it takes the rest of my life to get him out, I will.” Part of the story is that I do represent here the Family Link in British Columbia, a small group of families who at one time were known as the Woodlands Parent Group. The Woodlands Parent Group are the people who initiated closing the large institutions in British Columbia. It wasn't people in government. It wasn't the people on the streets. Six parents started it, and the parents were the ones who actually took on the job of taking people out of the institutions.

We did that, and with that group my son came out. He's doing really quite well, thank you very much, and so is everybody else who came out of the institution.

We went to the back wards first and took people out of the institutions so that nobody could say it's okay for them, but it's not okay for them.

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Here we are in the year 2001 and how many institutions are there in Canada? I don't want to name them because there are just too many.

I guess what really upset me more than anything was that about three weeks ago I talked with a woman who has a very good job in Vancouver. She has two daughters. One is nine and one is four. She was left as a single parent and she came to me and said, “Jo, what do I do? I have my job. I have no other support. I'm fighting for support, but I have no other support. I have my job and I need some help. After school I have no place for this person to go and I can hardly afford the day care because the price is so high. I went to the ministry and the ministry said, sorry, we can't give you this support, but what we can give you is one of two things—privatization or foster care.”

Now, I have to ask you. You must know the cost of foster care in this country. You must know the price of privatization in this country. It doesn't make any sense. It made no more sense than that we would go with a budget of $7,800 and they put him in a bed that at that time cost $70,000 a year. It doesn't make any sense, folks.

I think if you took an audit—or whatever the heck you call it—or costing for people, to keep them at home with supports can't be beaten in terms of cost. It just can't be.

Of course, that doesn't even talk about the progress the child makes, the process the family goes through in terms of having some supports. It doesn't even touch on those.

I guess I realized that day it hasn't changed. As a matter of fact, it's gone back. What has happened with my son's life is that he now is in the community. But the other thing that's happening is—I'm sorry, I sound negative but I don't mean to be. But you're looking at problems, I hope—the system has taken over his life. They have everything from people who give him assessments, people who are there if he gets sick, to see whether or not he's being abused, licensing that tells him he has to have this fire exit and that fire exit. All of these things, under the name of protection, really in a sense are almost trading one master for another.

When I look at what we want for our kids, whether they're adults or children, it's to live the same kind of life that you and I live. Sure we need protection, but we have areas in our society that will protect us from harm. We have all sorts of supports. We have recreational programs. All we need is somebody to support our son or our daughter going into those generic services. That's what we need, instead of a whole bunch of new programs that stuff you into this box and this box and this box.

I hope I'm not offending anybody. But I honestly believe we have to have a switch in our thinking about people with disabilities in Canada.

One of the things that we came up with right from the very beginning of closing Woodlands was we wanted the money spent on the person to go directly to the person. Let the families look at the supports they need. If they need to be monitored, fine and dandy, they could be audited every month, or whatever makes anybody else feel comfortable. It doesn't matter, because I have not seen many greedy families. I haven't seen any greedy people with disabilities, including people with physical disabilities. They just don't have that in their psyche. They just don't. What we call individualized funding is the way we would like to go.

The other very important thing is that families across this country are dying to talk to each other. The technology is there. The problem is we haven't any money for the technology because nobody gives families money for things like that. So it's something we would like very much.

• 1615

You all know about inclusion. I don't have to talk about that. The other thing is that we do miss—and I know it can be a political statement—the federal government and the MPs. What we miss is the fact that we had good relations with them, speaking to them when we needed some things. There were some things they could help us with. We used to get guaranteed mortgages from the federal government. We use to get contributions that were matched. I guess it's just a presence, because disability goes right across this country. I don't want to make it different, because they're not different, they're single people, but it's something that needs to be addressed in a way that is cooperative. I'm very glad to hear that there are committees now with provincial and federal regarding this particular area.

That's just about all, folks, except to say that they're worthwhile. They truly are worthwhile. They're a gift to us that we've never recognized. They're a gift to society, as well as being a gift to me.

Thank you.

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

Mr. Bailey.

Mr. Roy Bailey: Thank you, Chair.

It is a little difficult for me to relive the stories you have told me, because they have been very much a part of my life. Here we have people from several different provinces, but the story is the same, and the story has been the same for years. I think this undying love and support that people like you have for your children make you unsung heroes, because I know many people like you, in my experience and in my profession.

One of the difficulties we have was alluded to by many of you. Here we have people from the national scope, and then when you break that down, you're also from different provinces, and you break that down further—as Gloria mentioned, she's from Prince Albert. So you have different levels and different approaches, and one of the things you have... I'm not sure of the total support and so on, but I can tell you that the Canadian Association for Community Living is one of the finest organizations I know of in this field. It's an organization I haven't had much to do with directly, but since its inception, I have to say they are making the proper strides.

I'm somewhat disappointed, though, since I left the system as such. With your description as to what is still going on within the educational field, as Gloria pointed out, I'm somewhat surprised. I know not to criticize somebody else's jurisdiction, because I don't want them criticizing mine, but I wanted to say that it's almost totally impossible, in my experience, to have total integration. You must have integration, that's been proven, but there are times in the individual learning situations where that can't take place. But it doesn't have to be just in the cities for the services. In my own constituency I have remarkable services being provided on a free will basis by one place in particular. They call it the Family Place, where parents like yourself can come in. You can come in daily, the child can be taken by a volunteer, and you can be with your other children.

• 1620

I put a request in for some support for that particular group, because they're doing what you, Barb, mentioned too. That can take place in a small community. People like yourself have a tremendous job just in rearing your child, but you also have a tremendous job in getting the community awareness as to the needs. I would break down in tears if I had to listen to you all the time, because it's very heartwarming to me.

I'm wondering if the Canadian Association for Community Living—and I'll just end on this point—thinks we should have some program or someone with expertise to go into the individual communities and help with the volunteer program. What Jo has said is true, you get the biggest bang for your buck with a child right in the home. There's no question about that, and I agree heartily. It seems to me that there's more support sometimes in the rural communities, where they come together, than there is even in a small city like Prince Albert. I think that's a goal we should strive for, Madam Chair.

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

Ms. Diane Richler: Thank you for underlining the seventh of our seven recommendations in the brief to you, that one of the areas we're calling on the federal government to support is family-to-family support, not services. One of the criticisms many families made of our organization was that they had to come to us in order to get information, when what they really want to do is to be able to network with other families. We are endorsing that.

I'd also like to underline something else that came out in the presentations that I didn't draw attention to. In some research that the Roeher Institute is about to publish they found that 96% of families of children with a disability where the children need help with everyday activities—their level of disability requires them to have help with feeding or toileting, things like that—incur costs that are not reimbursed. When you hear the stories today of families paying for speech therapy, for occupational therapy, for respite care, 96% of families of children are paying for those services.

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

Madame Guay.

[Translation]

Ms. Monique Guay: Thank you, Mr. Chairman.

I was very moved by your testimony, particularly since I too am I mother. I was fortunate. My children are healthy. However, I know how hard it can be to face problems on a daily basis and not to have access to much needed resources.

Perhaps more than any over province, Quebec is making great strides in its work with children with disabilities. In my own riding, a school has been especially adapted so that children with disabilities, however serious, can attend regular classes and not be segregated. All children attend the same class and learn and eat together. There is no discrimination. It is truly amazing to witness the integration process and to see special friendships formed. I spent an entire day at this school as an observer. Of course, seriously disabled children have a more difficult time, but nevertheless, they still take part in playground activities with the other children. It would be nice if this were the case everywhere.

Children with disabilities are also given the opportunity to attend camps. In the region I represent, namely the Laurentians, there are several camps where children with disabilities can enjoy summer activities. These camps also allow parents to take some time for themselves. That's critically important, in my opinion.

• 1625

I would imagine that each province has its own programs provided for the most part by health services. Various provincial services coordinate their efforts. Perhaps some consideration could be given to introducing a tax credit which would go directly to families that provide care in the home to children with disabilities.

[English]

The Co-Chair (Mr. John Godfrey): Does anyone care to comment on that? Why don't we start with Mike, and then go over to Lucie.

Mr. Michael Burke-Gaffney: In response to your comments, and to Mr. Bailey's comments too, it comes in different directions. It comes from the ground up. It will come up in my community through a group like the Hamilton Family Network, which is providing family-to-family support.

But a huge amount of the work the Hamilton Family Network, for example, does right now involves families from the public school board, from the public system, whose children are being excluded from classrooms or receiving an hour's instruction a day—totally intolerable kinds of situations. And when bottom line issues are raised, the first individuals sacrificed are educational assistants; that's how those kinds of boards routinely deal with that. So they have placed a value on inclusive education, and it's not a very high or important value.

In another school board, right across the street in Hamilton, the Separate School Board, the attitude is completely different. They value the children; they value the educational assistants who work with them. They require a certain amount of training. And they receive respect within their own community from their own colleagues.

So in answer to your question, Mr. Bailey, it is possible to have a perfectly integrated setting, because I have been witness to it now for 12 years in Jesse's life. Does that mean there are not times when we have to go and deal with a teacher or deal with a bureaucrat? Of course not. Part of what all of us parents have been saying is that we must be vigilant at all times. We can't turn our heads.

There is that kind of thing, fighting from the ground up. That will make changes in communities. I suggested in my remarks that those changes for one generation tend to be rolled back and have to be reinvented, as was the case with Jo and her generation. We're now beginning to see that.

So my reference at the end to a role for federal leadership was aimed primarily at you, the elected officials, so you do something. I know education isn't your jurisdiction, even cutbacks in transfer payments to education, for which you were criticized. In fact, in Ontario, my province, we now spend more on education than we did before. It's a question of what your priorities are and what you value in that education system. But I'm not talking about that; I'm talking about a leadership role, for example, in setting a national standard. Your reference to tax breaks for families raising disabled children at home is a perfect kind of thing. I thought the tax break I now get currently for having a child with a disability, the credit on my income tax form, was a good step. It reflects that, and it's money we can use, quite clearly.

I see a leadership role that goes beyond the imposition of tax credits or statements of support in principle to something comparable to what the United States has done with an American disabilities act. That is a federal, mandated piece of legislation that provides for respect for people with disabilities and integration in their community from the top down. And so both forces are working, from the bottom and the top.

Taking the example of Ontario, a provincial disabilities act has been on the front burner “since the first time the Harris Tories were elected in 1995”, but the fact remains that nothing has happened on that front. It's a natural area, I think, for leadership from a federal government and an all-party federal arrangement. That would be my response to that.

• 1630

[Translation]

Ms. Lucie Charron: Continuing along the same lines, there are also a number of positive things that are being done in the region. You mentioned camps and the like. The Association communautaire de l'Outaouais organizes weekend and summer camps. We do provide some services, but more are needed because the demand is great and parents are exhausted.

Progress has also been made in terms of increasing awareness in schools. APICO representatives visit schools in the Outaouais to talk to students from kindergarten through sixth grade about accepting children who are different. That is not so difficult for them. The hard part is the lack of teacher support. While teachers have the will and desire to work with our children, they lack the resources and the teacher aids. They can't accomplish the job without help.

Ms. Monique Guay: Special help is essential. For example, in a class where there are seven severely disabled children, at least two teachers with special training are required. They do extraordinary work. They may work with a child for a week to teach him how to hold a ball. Their job requires highly specialized skills and training. Obviously, not everyone is interested in doing this work, but a growing number of people are opting for this field.

Paratransit services are also becoming more widely available. My region fought hard for this type of service and great strides have been made.

Ms. Lucie Charron: May I respond?

The Joint Chair (Mr. John Godfrey): Very briefly, please.

Ms. Lucie Charron: Paratransit is a major concern of ours. We try to show people how to use regular transit services, if at all possible for them, to help them better integrate into the community.

The Joint Chair (Mr. John Godfrey): Thank you.

[English]

Ms. Lill.

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

First of all, I want to apologize for not being here at the beginning. I didn't hear you, Diane, and I didn't hear you, Michael. I think I know some of the things you have to say.

I was struck by the comment you made, Lucie. Your very last statement was that daily existence is close to impossible. I don't think there could be a more poignant statement. Yet you do not have to qualify it by saying there aren't all sorts of joyous moments. I know there are. Life with your children is valuable. It's what you want. You want to have your children in your life. You do not want them in institutions.

I hear that idea from Jo Dickey, and also Barb Horner. I've heard it before from the CACL. It's the issue that there is money to put your children in foster care or in institutions, but there isn't money for you to keep them within a family setting. I find it so astounding. We know how much more money it costs. We know it is moving back into an institutionalized model we have all left behind.

Jo, you obviously fought long and hard to open the doors to institutions in B.C.

Quite frankly, I have a son with a disability. We took him to high school last week. He has been in an “included” class all his life. We walked in the door. There are two segregated classes in Dartmouth High School. Their very existence has an impact on my son's ability to be included. There's no getting around it, he's not going to be in those two classes. The fact is, as long as they exist, it makes it very difficult to say this is where my child belongs. He belongs with ordinary children who are going to move him along at the pace he wants to go.

There's so much back-fighting going on. I see it, you all see it.

I do want to come to a point here. I want you to talk.

• 1635

We talk about the role of federal leadership. It is for national standards. We can say we don't have a role in education. Let's face it, the federal government has a major role in human rights. The Charter of Rights is a federal responsibility. The role is there for us to make sure there are supports for our kids in schools and the workplace, with independent living, and all of those things—all the equal citizenship points that were brought up by the task force in 1996.

We all refer back to the Andy Scott task force. Unfortunately, there are 54 recommendations. I think only six or seven have been implemented.

We're here again. You are here. We appreciate your being here. I'd like to hear from you as to what it is you need from the federal government. It may just be a good night's sleep. Whatever it is, I want you to say very clearly what bold, courageous act you would like this bold, courageous, joint subcommittee to take on right now.

Ms. Gloria Mahussier: I'd like my son to go to school and get a meaningful education. It would be my first goal, and then sleep.

Ms. Wendy Lill: How would it happen?

Ms. Gloria Mahussier: How would it happen?

Ms. Wendy Lill: What does that mean?

Ms. Gloria Mahussier: We've been struggling with it for six years now. We actually have a human rights case in the province because he's been discriminated against. What would it take? A change of attitude where our children are worth it, to respect them and see them as people.

Ms. Jo Dickey: I think it's a very nice question you're asking. I really believe the standards are incredibly important. They fall out of the charter. Some of you, maybe not very many of you, remember the fight to get people with disabilities into the charter. I certainly do.

If the charter is sitting there—we refer to it as being the rights of our children—and it's not carried out, what does that mean? What does it mean? It's a big question. The standards, to me, would fall out of it. We would have something to say. This is a citizen. These are the standards that apply to the particular declaration by all Canadians. It's one thing.

The other thing is I honestly think you are giving money to the provinces for my son. I know all the restrictions, all the political stuff and everything. This is a special situation with people who have disabilities in terms of how the money is given. Do you know what I mean?

In other words, we get it through medical services. We pay for it, but the government pays for a lot of it. We do have the option to go to a doctor we like. We have an option to go wherever we like. We have those options. My son doesn't have them. There's a door he has to go through. Then everything is managed for him. They even call people “case managers”. Nobody wants to be managed. They don't want to be managed. They want to have lives and manage their own lives.

I think the standards are very important. If you can help families network with each other across this country, you would have great support. You would also have a thermometer out there, in terms of what it really is that families want and need. They would keep you alert. They are free agents in our community. They have no ties. They may belong to this and that, but basically, first of all, they are a family. You're going to get great feedback from them if you can help us network across the country. It would be wonderful.

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

[Translation]

Ms. Charron.

Ms. Lucie Charron: What we really want are services that meet our children's needs - services like speech therapy and occupational therapy. However, above all, we would like these services to be free of charge so that we don't have to pay $80 an hour just to address a child's needs.

• 1640

Families are suffering from burnout. In order to stay together, they need some respite, some breathing room and time to spend with other family members. Thank you.

[English]

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

Mr. Alan Tonks (York South—Weston, Lib.): Thank you, co-chairs, and thank you for your deputations today.

I want to understand more about the three particular areas in the Canadian Policy Research review that would develop a comprehensive program. They are adequate income, effective parenting, and supportive community environments. I'd like to talk about adequate income.

Diane, perhaps you could just help me understand the chronology here of improvements to the Income Tax Act. I'm looking at the documents you've given, and on February 28, in the $100 million for extended support and improved tax assistance, a number of areas are enumerated.

Under the tax cuts for the families of people who have disabilities—recognizing, incidentally, that tax benefits are helpful to families, but those with disabilities also reach a point where they don't have incomes, and I realize we have to go beyond this—I want to understand the Opportunities Fund, the health and activities limitation survey, the report card, and so on.

Are they covered by the medical expense tax credit, disability tax credits, and everything else you've listed here? Were those implemented in Paul Martin's budget, or are they suggestions you wish to see acted upon?

Ms. Diane Richler: We have a combination of things here. The white sheet you have, “Voices of Families... heard in Budget 2000”, is the list of what was included in the budget. We've certainly been pleased to see in recent years, since 1993, that there has been some investment in persons with disabilities in every budget. I think there are a couple of issues, though, that could be underlined.

One is that the budget provisions, by and large, have been helpful to those families with incomes, but families who don't have the money to pay out-of-pocket expenses aren't able to get relief from the tax system. So one of the proposals we've made is that we look at refundable tax credits for disability-related expenses, which would help an enormous number of families.

Another issue underlines a lot of the comments you heard today, but I just want to take advantage of the two subcommittees being together to underline this again. In the opening remarks, there was reference by Dr. Bennett to the fact that the disability subcommittee wants to make sure it thinks about children and the children's subcommittee wants to make sure it thinks about disability, which we very much appreciate.

The issue of the cost to families has not been very visible on the disability agenda, and it's been minimized somewhat in the children's agenda. I think what we've heard from families of sons and daughters with disabilities is that it's impossible, from a policy perspective, to address all the challenges facing people with disabilities without thinking about the family context. The family is so important, not just in the early years but throughout the life of a person who has a disability.

So the common thread today is to ask you to think about the kinds of supports that are needed by families, not only by individuals who have disabilities, and not only children, but families, in order for them to continue to play the role they've played, because I don't think they want to give up that strong role, but so that they're not bearing all of the cost on their own.

• 1645

Mr. Alan Tonks: I have a second question, if I may, because you covered it partially in your supplementary portion of that answer. I'm still looking to the tax system, though, and I'm looking at achieving tax fairness. The last two points you have on giving families the opportunity to save for the future of their child... and I still recognize that there are those who drop below the reportable disposable income line, which is a whole different case. I'd like to talk about enhanced savings for families or a member through something like your suggestion—the creation of a Canadian disability benefit. Has there been any discussion with Finance with respect to that kind of a mechanism? That's kind of into a whole different area now.

Ms. Diane Richler: Yes.

Mr. Alan Tonks: A registered educational credit now has been announced, but this is now a specific subset of that.

Ms. Diane Richler: We put together quite a comprehensive series of proposals last year, that being one of them, and we do have discussions tomorrow again with some people at Finance and will be raising that again. But one of the difficulties is that, even for those families who do have some resources, the current tax system doesn't permit them to be able to save anyway. So, for example, they don't get enough tax relief if they want to be able to leave a house to a child who has a disability or if they want to be able to save money to purchase a house for a son or daughter who has a disability. So those are some of the other items we're putting forward.

Mr. Alan Tonks: Okay, I just have one last question, if I may.

In terms of the six points I think Barb made with respect to what you would be looking for in supports, I think these fit into a framework—after-school support, respite time to spend with your son not as a caregiver but just as a mother. That I really understand—I guess just the community support framework.

My question is, how could we have a national, integrated support program? How can we coordinate it? How could the federal government? Are you aware of any mechanism across the country that exists where we're in fact strategically finding out where the gaps are in the support systems and then strategically filling them or making recommendations? I'm thinking of it sort of through the social union framework. That is a federal initiative, which has principles established for direct program supplements and so on.

Maybe that's a rhetorical question. Perhaps I'm thinking that maybe the social union framework is the way we should do it, and it's not fair to ask you about that. But is that the kind of direction you're looking for from us? “Look, we're aware of what the problem is, and this is something we know is happening, and how does it seem that you could input and get involved in that kind of a comprehensive strategy for the country to meet your needs?”—is that the kind of thing you're looking for from us? Because that's what I'm hearing.

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

Ms. Diane Richler: At the risk of answering more questions than I wanted to, there have been many opportunities offered by the federal, provincial, and territorial working group on disability to have input from disability organizations, and certainly some of these issues have been brought forward. I think, though, that one of the challenges has been that, because the ministers collaborating on those programs are ministers responsible for social services, that covers a segment of the issues that families raised.

Families don't tend to think of their needs in terms of their social service needs, their health needs, and their educational needs. They just think in terms of, “Why can't I sleep tonight?” And it all comes together.

• 1650

So I think the references that came back to the charter relate to issues that... When any issues are on the table—whether it's the national children's agenda, discussions about home care, discussions about future developments in Health Canada, or whatever it happens to be—the particular needs of children who have a disability and their families must be taken into account and be considered in setting priorities. Our feeling is that often a priority is set, and then somebody remembers that we forgot to think about people with a disability, and so somehow there's a band-aid put on somewhere to include disability, rather than thinking about disability at the beginning.

I think if you look at the list of what we've identified as the framework that's needed for family support and the opportunities that exist now within the emerging public policy within the federal government, there may be a number of different places. We don't think there's one magic bullet of a disability program that's going to solve everything. It's a question of building in the pieces in a number of places.

The Co-Chair (Mr. John Godfrey): Might I be permitted a question? And then we go to Mr. Crête and then to Mr. Bailey.

First, I have two observations. One is that I think the notion of the rights-based argument is really interesting. It seems to me it's the way the U.S. legislation works, as I understand it—that essentially this is a question of human rights, which overcome jurisdictional issues. Whether we're talking about the rights of the child or the rights of the disabled—you can come at it two ways in this subcommittee—I think a rights-based approach, whereby the rights triumph over other things, is worth thinking about and pursuing.

It's also interesting that we've got this tension between provincially provided services on the one hand and federally provided tax credits and tax breaks on the other hand. Where there is an interesting new dimension—and it was raised by Mr. Tonks—is in the social union framework agreement, where there is a notion that if there is a level of services available in one jurisdiction, that there ought to be a race to the top, that one can use that in... Now whether individual citizens can do that is the challenge, but one can kind of ratchet one's way up to the better level of services, which is why we're always so encouraged when Quebec or any other jurisdiction leads, because we can say it ought to be as good as Quebec.

My question, and I'm afraid it may have to come back to you, Diane, is, when I look at your seven items, two of them—that is to say, number 5, which is planning and coordination supports, where you're dealing with supports and services across a number of ministries, (many of which will be provincial), and family-to-family support, which everybody here at the table has said is something that happens at the community level... This is something that doesn't do any good if you can find... It may do some good, but basically it's on the ground, geographic, community-based support. And here we are, and the paradox is that we're the federal government, right? So what are the connections that are not going to offend constitutional jurisdictions, which are practical? I'm thinking particularly about how we up here are to help folks at the community level get in touch with each other—family support groups, on the one hand—or how can we, up here, help you at the community level to organize provincial services? That's what it's sort of coming to.

Now the interesting... again, one suggested little answer is in one of the documents, which was the inclusion in the early years, because under the early childhood development agreement, the feds are kind of doing that on the early childhood development file. We're giving incentives at the community level for folks to talk to each other and to provide an integrated series of services from conception to six, right? And we are trying to get people to talk to each other at the community level. Again, we're funding it through the provinces. I would like your comments, particularly yours, Diane, about what it is we can do concretely up here to help folks in your various communities talk to each other better. Is it a help line? What is it?

• 1655

Ms. Diane Richler: Two issues come to mind. One is that the federal government has certainly taken very seriously, over the last number of years, the role of the voluntary sector. I think, to some extent, the voluntary sector has been thought of in quite a structured, formal way rather than necessarily thinking about the relationships among less formal elements of civil society. So there might be a way to look at the federal government's role not only in promoting the formal voluntary sector that comes together in umbrella organizations, but also in more loosely affiliated groups.

On the other issue, I would like to draw your attention to some work that's been done by the member of Parliament in my riding, which has been to look at the whole question of citizenship. Dr. Bennett happens to be my member of Parliament, and she's done a lot of work in our riding helping to explore citizenship and what it means. For our organization, the role of families coming today to the Parliament of Canada is an expression of citizenship, but we would not have been able to find them if we hadn't, as an organization, had some support from the Government of Canada to go out and find people across the country and listen to their stories.

I think, to me, this is a very rich process and a rich dialogue, and the federal government has really been fanning the flames in the background by creating environments where people can come together and understand their own situations, and understand the broader environment and then be able to bring their stories forward. Maybe Heritage Canada has a role to play here. My way of thinking about this is that the sensitivity to the role of families with sons and daughters who have a disability needs to cut across the federal government, and while we want leadership from these committees and from other departments in their areas of jurisdiction, we'd also like to see a much broader recognition and sensitivity to these issues in a whole number of areas.

The Co-Chair (Ms. Carolyn Bennett): On Friday, when we did our meeting with Stephen Coleman from Westminster, we had a video conference from the Hansard Society in terms of the role of members of Parliament and the e-citizen. He gave an excellent example of what Westminster has done in taking a piece of legislation, or a problem, to a group of assaulted women, who then had a facilitated online conversation to come back with recommendations on a particular problem or a particular piece of legislation. I think this is one of the interesting things we could be looking at in that, as we all know, government doesn't deal very well with problems; it deals with solutions. And for the people in the trenches to have a place to go and develop solutions to bring forward to government, I think is part of our democracy and part of actually making things happen.

[Translation]

Mr. Crête for one final question.

Mr. Paul Crête (Kamouraska—Rivière-du-Loup—Témiscouata—Les Basques, BQ): Thank you very much.

Last week, I met with the parents of a young disabled child. I think every Member should have a similar experience because it's worth more than all the lobbying the world.

The problem isn't the parents' relationship with the child, but rather the way society relates to the child. The parents I met were at the end of their rope. They were constantly in a position of having to reapply for a tax credit for their child who had been diagnosed as autistic and of having to have him declared seriously ill.

• 1700

Based on your experience, do you find that Revenue Canada's current interpretation of this tax credit is adequate, or is it too narrow? Is there room for improvement on this front? That's my first question.

Secondly, if it were up to you, would you have used the $15 billion surplus entirely to pay down the debt or would you have spent some of the surplus of persons with disabilities?

[English]

The Co-Chair (Mr. John Godfrey): Who'd like to answer that? You might find this committee was in more agreement with you.

Ms. Gloria Mahussier: You were talking about a family that has a child with autism. One of my very close friends was getting that credit, and then they just stopped it. They didn't qualify any more.

Mr. Michael Burke-Gaffney: There does seem to be a certain arbitrariness that has crept into the judgment and the rationale that the ministry uses to make that kind of judgment.

My experience when my children were born was the doctor's certificate said Down's syndrome, and it was filed in the office and we never had to revisit it. So that's not going to change. It's not going to go away. It's not going to ameliorate or in any fashion change.

But I do know families, generally with autistic kids, who are experiencing relative degrees of acceptance and rejection. I don't know how the standard again is based for them to make that judgment.

[Translation]

Mr. Paul Crête: I used this example, but I could have mentioned another disability. I was asking if in your opinion, the interpretation of the tax credit was generally fair, or too narrow. Is there something that could be done to improve this aspect of the legislation?

Ms. Lucie Charron: My son suffers from a mental impairment, but his condition has never been formally diagnosed. He has been impaired since birth and his condition is not likely to change. Time and time again, we're asked the same questions: is your child still disabled? Surely something could be done to change that, because that fact of the matter is that he has been disabled since birth and will remain disabled.

[English]

Ms. Jo Dickey: I want to make a comment about it because I'm not in any situation where I'm looking at a tax. But at the same time, I think it should be made clear that labels are something we are not really considering. They're a diagnostic tool for medical health or whatever. What people use them for is for exclusion a lot of times. So we stay away as much as we can, as families, from labelling our family member. It's such-and-such who walks down the street who has a label right on his back.

If it's an impediment that they have to have a diagnosis, and I don't know whether it is, then maybe that should be looked at, sir.

[Translation]

Mr. Paul Crête: And the billions of dollars?

[English]

Mr. Michael Burke-Gaffney: If the experience of Ontario is any indication, we have seen cutbacks since 1995 in the community and social services ministry, until recently, when “new money” was pumped back in. We saw it filter down through our community in Hamilton. From say $50 million we were able to see little more than $1 million. After a closer look at it, we saw a considerable amount of that money going to the bureaucracy in place. Parents, again, are feeling thwarted in being able to plug into that as a resource.

So if that were unencumbered money you're offering, then...

The Co-Chair (Ms. Carolyn Bennett): I think we have explored the flexibility or the responsiveness of definitions, and whether there are certain recurrent conditions, the conditions that just don't fit at the moment. The people, even as adults, who receive a CPP disability pension but don't qualify for the disability tax credit... I think our committee is keen to deal with some of the recurrent mental health problems, or cystic fibrosis, where somehow breathing doesn't seem to be an activity of daily living in our current definition. We've got a lot of work to do, and it requires listening to groups who actually have thought about these things. We hope we will be your voice.

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What I've heard—and maybe John can say a little bit more—is that across this country there are some common themes. The labours concerning income and tax are ours, but so is the human rights issue, what each Canadian ought to be able to expect and what families ought to be able to expect. Obviously, with the In Unison 2000 framework agreement, there is some common stuff that's been agreed upon between the federal and provincial governments, the early years development fund. I think we need to work together to see that there are going to be some dollars. And there's supposed to be some reporting. How do we make sure your issues are in the reporting for those early years dollars? I think it's a place we can begin to make a difference at the early end.

The whole thing regarding accountability is a challenge for us in this complex federalism, and I think you need to know that on the accountability file, we are interested in hearing what people think. It probably will be a piece of work for the fall, to see what would be the best way. We have a charter of human rights, yet we have Eldridge, where we've not really been able to enforce what the Supreme Court said.

So what should the next steps look like? There is, as you know, some work on a disability commissioner. There's been some interest in expanding the audit capacity and the back end of the Human Rights Commissioner's office to go out and be more proactive and find out what's there. There's a real need, I think, to share best practices across the province. I think some of the In Unison work has served to do that, but we really do want a race to the top, and we obviously need your help as to how we do ensure full citizenship and full benefit, voices from families like yours across this country.

Somehow we've got through this whole meeting without talking about Latimer, but I guess we'll do that tomorrow.

Ms. Diane Richler: I forgot one of my very important responsibilities, which was that I was supposed to reiterate the invitation, which I hope you've all received, to a reception this evening at the Crowne Plaza Hotel in the ballroom. Many of your constituents will be there and we hope to see you there. It's at 9:30.

Thank you.

The Co-Chair (Mr. John Godfrey): I just wanted to add my voice of appreciation, particularly for your telling your stories, putting a human face on these children or former children, so that we know about Drew and Alexandre and Mallory and Travis and Emily and Jesse. It just transforms the discussion. And I think Madame Guay put it so well: any parent is touched.

I think we've actually opened up some very important lines that may act as a segue to what we're going to be chatting about at the next phase of the meeting after you go. You've certainly laid out a very helpful program. I'm thinking about the way it was summarized in Diane's presentation. I'm delighted that we were able to get the two subcommittees together, because each other's business is each other's business.

So thank you very much for coming. It was very helpful.

The Co-Chair (Ms. Carolyn Bennett): We'll suspend the meeting and then we will move in camera.

[Editor's Note: Proceedings continue in camera]