Vanier Institute of the Family -- Virtual Library - Transition Magazine - Back Issues

For every human being—disabled or not—it is recognition by others
(in the form of respect, affection, consideration and concern)
that shapes us, nourishes us and grants us value and purpose.
—Catherine Frazee

Disability is a family and societal issue, not just an issue that affects individuals. People with disabilities are living longer than in previous generations, which means more families are providing care and support for more years. And, as Judith Maxwell of Canadian Policy Research Networks says, “Children with disabilities are over-represented in families with low income for two reasons: first, because the extra time required for care leaves less time for the parents to do paid work, and second, because these families face higher out-of-pocket expenses.” These families deserve our support.

The Roeher Institute estimates that between five and twenty percent of Canadian families have children with disabilities. This means at least 400,000 and possibly over 1.5 million families are dealing with their children’s disabilities. Many other families have a parent, grandparent or other family member with a disability.

This issue of Transition looks at not only the needs that go along with disability but also the many ways in which children and adults with disabilities make a positive difference in the lives of their families and all who know them. The focus is not just on disabilities but also on abilities. The Vanier Institute of the Family is honoured to present feature articles by Jean Vanier, Sharon Hope Irwin, Al Etmanski and Vickie Cammack. And we are especially pleased to begin this issue with the voices of a number of Canadians who live with disability every day—their own or that of someone close to them. In them we find examples of the kind of courage, creativity, love and joie de vivre that family life is all about.

The real experts on disability are those who live with it every day. Here are a few of their voices, as quoted originally in Our Lives, Our Voices: Families Talk About Lives Worth Living (2^nd edition), a new book published by the Canadian Association for Community Living. Except for "Welcome to Holland," the following are excerpts from longer pieces.

I am often asked to describe the experience of raising a child with a disability—to help people who have not shared the experience to imagine how it feels. It’s like this …

When you’re going to have a baby, it’s like planning a fabulous vacation trip—to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You learn some handy Italian phrases. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, “Welcome to Holland.”

“Holland??” you say. “What do you mean Holland?? I signed up for Italy! All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. So you must go out and buy new guide books. And you must learn a whole new language. And you meet a whole new group of people you would never have met in Italy.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place. It’s just a different place. It’s slower-paced than Italy, less flashy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that loss will never, ever, ever go away because it is a very significant loss.

But, if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

“Our beautiful daughter Jessica came into our lives on April 14, 1998. An hour and a half after her birth we were told she had Down syndrome. Jessica’s first cousin Chris is thirteen. For a school assignment, he had to write about someone who inspires him. This is what he wrote:

From Judith A. Snow, M.A., a philosopher with the Centre for Integrated Education and Community:

“When I was seven months of age, I was diagnosed as having Spinal Muscular Atrophy, a form of Muscular Dystrophy. [Now] I am an adult with an extensive disability.

“Our society offers help and support in a very mechanical and systematic way, as if it didn’t matter what the purposes and capacities of the ‘helped’ person were. In fact we usually assume a ‘severely handicapped’ person has no purpose and that their capacities are irrelevant or nonexistent. These devastating assumptions blind those who are ‘helpers’ to the contributions the person is already making and to what he or she would do if supported in a less mechanical, more creative and respectful way.

“Adopting an attitude of respect and creativity requires courage. It requires a willingness to see people as they are—different perhaps in their minds and bodies, but not different in their spirits or in their willingness and ability to contribute to the mosaic of society. It requires the ‘helper’ to have the humility to listen to what the person says he or she needs. Also the ‘helper’ must see that the interaction ‘helps’ both ways.”

“When my son Cole was born, I took a deep breath and waited for reassurance that he was normal. I was gifted with an active baby boy. He was physically beautiful. His early benchmarks were constant, and sometimes accelerated.

“When I first came to realize Cole had autism, I remember thinking nature had played a cruel joke on me. I was angry, sad and frustrated. Now I look at Cole and see that the original, perfect boy is still there. Nature has indeed played a trick on me, but it is not a cruel one. I no longer view myself as a victim. I have been encouraged to grow, to understand Cole, myself, and humanity in ways not otherwise possible.”

“In many ways we are a typical family of four. We have a seven-year-old daughter and a four-year-old son. What makes us atypical is that we have lived in five provinces and a territory, and that one of our children has Down syndrome.

“Having lived on both coasts and several points between, one thing that has been strikingly evident is the inconsistency in services, policies and education available to children with disabilities in different regions of the country. This can be very frustrating and, more importantly, damaging when you consider the importance of early intervention in children. Time lost can never be regained. There needs to be a standard of practice across Canada.

“Emphasis on inclusive education needs to be heightened. The benefit of including children with disabilities in a classroom with their non-disabled peers is circular. When children experience individuals with disabilities in a classroom&8212;their first real exposure to a diverse society—they will appreciate their individuality and not question their value as citizens when they grow up and become decision-makers. As a society we need to understand the ‘big picture’ and long-term benefits of supporting families and children with disabilities.”

“I am a nurse who provides pediatric respite to families with children with special needs. These families must have appropriate support. Adequate financial resources for school programs and respite must be available. Bluntly speaking, they have saved the system untold amounts by keeping their kids at home and caring for them. They do not have the energy, time or resources to continually lobby [and] they should not have to beg for health care and education for their child.”

“On January 15, 1992, our family adopted our youngest brother, Daniel, who was eighteen months old. Since then, we have become very attached to him. He has Down syndrome and has always had many needs. Love, attention and understanding are only a few. Daniel is now ten and has completed fourth grade in an inclusive class. Sometimes it’s hard because he communicates with signs he has made up himself. We don’t always understand those signs, which gets him very frustrated. Daniel can be lazy when it comes to communicating verbally or trying something new, but we still love to spoil him. He has the gift of making us smile even when he does something that makes us mad.”

“[We have] seven children—six boys and a girl. Our fifth boy has autism. Sam is handsome and looks like a perfectly healthy eight-year-old. To strangers he seems ‘typical’ until severe communica-tion delays, occasional quirky hand movements, and social difficulties eventually make him stand out.

“I believe a society should be judged by how it looks after those who struggle. Sam is falling far short of his potential. He has a dedicated, loving family, and some dedicated, capable staff at school and home. But I see large gaps in the supports he [receives]. For instance, in spite of a severe communication disorder, he only saw a speech language pathologist for twenty minutes a month last year. Twenty minutes. I find these things frustrating. I find them intolerable. I find them in contravention of Canada’s laws concerning universal health care.

“The family is the fundamental unit of society and the natural environment for the growth of children. Families should be afforded the necessary assistance so they can fully assume their responsibilities. Families who have children with the treatable disorder of autism should not be excluded. With proper treatment, these children will make gains, become more independent, and require less support from society when they are older.

“Sam’s little brother says Sam should be a librarian when he grows up because he loves books and keeping things in order, and he’s pretty quiet. I hope he can.”

I had known Alex and Peter for years before their marriage; they were a beautiful couple. She was a ballet dancer, he a university professor. They rejoiced in the arrival of their first child, Francis, a beautiful boy. Six months later they called me to ask if my sister Thérèse, a pediatrician, could help them. Francis was having one convulsion after another and nothing seemed to stop them. Since my sister was living in England and my friends in Switzerland, she could do nothing except refer them to a good Swiss doctor.

Francis became severely disabled, the convulsions having damaged his brain. Today he is quite a big man physically but he is unable to talk or walk or feed himself. When he was a child, his illness and consequent disability were sources of tension, a tragedy for the family. Alex had to give up her profession in order to be more present to her son. She had difficulty situating herself between the constant needs of her little boy and her husband. Finally, Alex and Peter split and their marriage broke apart.

It is difficult for those who have not been close to situations like Alex and Peter’s to understand the pain of parents who have a child with severe disabilities. These parents ask, “Why us? Whose fault is it? Is this a punishment from God?” And there is a sense of shame as some parents feel that “if a fruit is no good it means the tree is no good.” They wonder, “Is my little girl really human if she cannot communicate, do things by herself and make her own decisions? Is she truly human if she cannot relate even with a ‘yes’ or a smile?”

Doctors often tell the mother to “just put him in an institution, forget him and have another child.” In many countries there is a lack of competent professional help and facilities such as schools, workshops or residences. People in public places, even in churches, turn and look with menacing eyes when the child makes loud noises. Or well-intentioned people look at the child with pity in their eyes. Friends seem to disappear. Some parents suffer a terrible loneliness and brokenness.

There are of course many different forms of disability. Francis has a severe mental and physical disability; others have an autistic syndrome or paraplegia or Down syndrome. Then there are all those who suffer from mental illness or a character or personality disorder. Some may find healing, or at least a fulfilling place in society, but the great majority are plunged into a world of loneliness, institutionalization, meaninglessness and ongoing failure. Their parents live in a permanent state of distress, guilt, anger and depression. This is doubly sad because, in many ways, parents’ attitudes determine the future happiness of their son or daughter.

What do parents need in order to find more peace, to accompany their child and to help her grow? Friendship and competent professional help.

In the early 1990s, I was able to help found Faith and Light communities in Rwanda. These are communities that once a month bring together people with disabilities, their parents and friends to share, celebrate, give support and help each other discover a sense of belonging. A few years later, at the end of the civil war, I went back and met with the Faith and Light communities in the city of Butare. During the meeting I asked them what Faith and Light had brought to them. Almost all the parents said, “I no longer feel ashamed. It is all right for us to have a child with disabilities.”

Loving, understanding friends help parents discover that their child is important and precious. He may be “different,” may have special needs and may need special care, but aren’t we all different from each other? Don’t we all have our special gifts, capacities, difficulties and needs? We do not all have to fit into the same mould of social success.

When the parents of a child with a disability are left too alone, they tend to close up in themselves, sometimes in sadness and anger. The presence of friends helps them to open up, to accept reality and to accept that their child is and will be different. Their friends will invite the whole family to outings and parties. They may even invite the child with a disability to visit for a day or two in order to let the parents rest or take a holiday. Friendship and love are creative and help us find a thousand ways of showing parents that we are with them, believe in them and believe in the importance of their child with a disability. Parents then feel that they belong to a group; they are not alone.

Parents also need to find competent, compassionate, professional help from doctors, teachers, social workers, therapists and others. These professionals will explain how the disability came about, what possibilities exist for growth and change, how to be with their child without expecting too much or too little, and how to love and accept the child just as she is. Above all, they will help the person with disabilities to develop their potential—to discover their capacity for relationships, for work, for art or music, and for social activities.

Perhaps what parents need most is to find people who can help them discover the meaning of their child’s life and the meaning of the disability. They need people to help them see that their child is not a failure, that he has a gift to give others. For some this may take a long time to discover, while others discover more quickly the amazing beauty of their child.

I remember the mother I met in Ontario who told me about her son who, at age four, had developed an illness that gradually paralyzed his whole body. One day shortly before his death, when he was already blind and totally paralysed, she was sitting beside his bed crying. He said to her, “Don’t cry mummy. I still have a heart to love my mummy with.” What maturity in that little boy! So many people spend their lives complaining about what they do not have, yet he was able to give thanks for the gift he still had, namely his heart!

We live in a world where success, reputation, appearance and money are the values most sought after. However, these values often divide us and make us into rivals. People with disabilities call us to discover the essence of human existence: love, respect, compassion, goodness, solidarity, acceptance of self and of others. Their very weakness, their cry for affection and understanding, can open our hearts to compassion and bring all of us together, despite being very different from each other. Even political rivals can become friends.

When people with disabilities sense that they are accepted and loved just as they are, when they are seen as someone of value with a gift to give, when they feel appreciated for their creative activities and work, they blossom forth. Energies are awakened in them. Life has meaning. This acceptance and respect is not just the work of professionals but of the whole local community— every one of us. A society where those who are “different”— weak and less autonomous—can find their place, is a society that is becoming more fully human, a society where together we can celebrate life.

People with disabilities, like all of us, need to find friends with whom they can share leisure times, and a community that rejoices in and accepts them. They need to belong, to be included in local events, to be welcomed at the swimming pool and other public spaces, and to celebrate with others in places of worship. A person with disabilities is first and foremost a person who needs to sense that she has value. That means that each one of us is called to a change of heart: to seek friends not only amongst those who are strong and successful but also amongst those who are weak and vulnerable.

Jean Vanier, Ph.D., founded L'Arche, an international federation of communities with people who have intellectual disabilities. The son of Governor General Georges Vanier and Madame Pauline Vanier, he is also the author of about twenty books, including Becoming Human(1998), Made for Happiness: Discovering the Meaning of Life with Aristotle (2001), and Seeing Beyond Depression (2001).

Child care advances that have been won for Canadian children with special needs are about to be lost. For a short time there was reason to hope that budgetary surpluses might be spent on social programs such as inclusive child care but, since September 11th and the economic downturn, the future for inclusion of children with special needs has looked bleaker than it has for years.

Despite the acknowledged benefits of child care to children with special needs and their families, despite Canada’s signature on the UN Convention on the Rights of the Child, which expressly forbids discrimination on the basis of disability, and despite interpretations of the Charter of Rights and Freedoms that require public schools to include these children, licensed child care centres in Canada are still not required to include children with special needs. While more and more centres are choosing to be inclusive, they do so without the necessary public policy, funding, and staff training. The move toward including children with special needs in child care rests entirely on a basis of voluntary accommodation and discretionary funding—a highly fragile and unacceptable situation.

During the past decade, child care practice, policy and training have become considerably more accommodating of children with special needs. More child care programs are based on child-centred curricula and individualized routines that respond to individual differences, and that try to ensure success for all children. Centres that include children with special needs usually receive some—but not enough—funding to support inclusion. Provincial child care legislation and policy regarding children with special needs have become less restrictive and sometimes even encourage inclusion. Strategies for successful inclusion are now included in many Early Childhood Educators’ training programs, and colleges have developed a variety of programs for special needs/resource teachers.

In 1998, researchers studied 848 child care centres in Canada. According their report You Bet I Care! A Canada-wide Study on Wages, Working Conditions and Practices in Child Care Centres, only 64-70% of Canadian centres include one more children with special needs in their programs. That means that 30-36% do not include any children with special needs. Moreover, You Bet I Care! estimates that slightly less than one eight programs nationally (12.2%) includes five or more children with special needs. Since it is estimated that between 5% and 20% of children have special needs, it is clear that these children are grossly under-represented in Canadian child care centres.

The findings from another study dealing with inclusion were published in 2000 by SpeciaLink, The National Centre for Child Care Inclusion, in a report called A Matter of Urgency: Including Children with Special Needs in Child Care in Canada. SpeciaLink asked more than 300 child care directors, Early Childhood Educators (ECEs), in-house Resource Teachers (RTs), and Traveling Resource Teachers (all working with inclusive centres) about changes in their beliefs, attitudes and skills related to inclusion, over the previous six years. Most have become more committed, more accepting of broader range of children with disabilities, and more willing include children with a variety of special needs. A very strong relationship was found between changes in beliefs and attitudes among the ECEs and in-house RTs and the strength of inclusion leadership provided by the centre director.

The inclusion of children with special health care needs (such those who need catheterization) and children with uncontrollable aggression or severe hyperactivity was still seen highly problematic by a substantial number of staff in the Matter of Urgency study centres. Apparently, respondents’ change in attitude from “uncertainty” to “strong willingness” was frequently a matter of experience. Often when the change occurred, it came from a positive experience with a single child, when a particularly persuasive mother or engaging child convinced a centre director to enroll the child despite needs that seemed especially challenging.

Trudy Norton, a centre director in Coquitlam, British Columbia, is a good example of how this “advocacy from practice” can work. As Norton says about a pivotal experience at her centre, “I just couldn’t say ‘no.’ But how were we to accommodate a child with a tracheostomy—a hole in her chest?” Norton worried about exposing the girl to potential sources of infection at the centre: “the rabbit and the sawdust, the sand table, the three- and four-year-old children who would find the ‘button’ on her chest endlessly fascinating. But I couldn’t say ’no.’”

As Norton told SpeciaLink, “We’ve always felt that when a family arrives at your doorstep, you do your best to help them. Still, it took a lot of reassurance from the child’s parents and doctors, and the Alberta nursery school she had attended, to give us the courage we needed. Plus, the province agreed to fund a half-time support person.”

Norton says Kaylee “needed exactly what we had to offer—a good child care setting. But Kaylee had one need we had definitely not been trained to deal with—her tracheostomy. The ‘trach’ required attention and maintenance. When she went to play in sand or water, we had to put a bandana over it. We had to clean the trach—a several-times-a-day procedure.

“We quickly realized that including Kaylee meant a lot more than simply dealing with the child. We had to deal with our own training, with staff concerns and parental expectations, with liability, and with the curiosity and needs of the other children.”

Was it worth it? “Yes,” says Norton. “First, there’s Kaylee. She is currently in kindergarten, with appropriate social skills because she’s had typical childhood experiences. She has now had her trach removed and is getting along quite well. Her parents were able to keep up their careers, which I suspect would not have been the case if an inclusive child care program had not been available.

“Second, our experience with Kaylee brought many issues to the forefront. We learned that many other British Columbia child care programs were also struggling with exceptional health care needs.”

Norton took her experience with Kaylee and developed a model, a training program, videos, and an advocacy plan for implementing appropriate supports to enable centres to include children with special health care needs in child care programs. After eight years of struggle, British Columbia adopted her plan, and many other provinces and regions have also moved in that direction. Norton’s training manual and video remain fundamental resources on special health care in child care.

On the other side of the country—in Cape Breton, Nova Scotia— the staff at Town Daycare Centre made a similar decision. They were confronted by Casey, a little boy with osteogenesis imperfecta or “brittle bones.” His chances of breaking a bone in an active child care centre seemed huge. But his parents believed the risk was manageable and worth the effort, and their belief gave Town Daycare courage.

Casey’s mother, Brenda, says, “Casey had been so attached to me and he was going to be starting school in a year, and I felt we needed to make the transition from home to school a little easier. The other thing was that Casey had never had the opportunity to play with little children in a free environment. He just wasn’t doing the things that little children should be doing and I was feeling kind of sorry for that. I felt he needed to get out.”

Before she discovered Town Daycare, Brenda tried to get Casey into a child care centre near home. “At the end of the interview I mentioned that Casey had a handicap. At that point the entire interview changed. The director said she couldn’t possibly take him, that he would be too much trouble. She wouldn’t have the staff to care for him. And when I protested that he was even less trouble than the average child, she just wouldn’t hear of it. And she kept referring me to the centre for handicapped children. Fortunately, I’d already looked into it and found out it catered primarily to mentally handicapped children and children with behavioral disorders—children that were non-communicative. And so I was able to tell her that was not the place for Casey. It just didn’t meet his needs. But it still didn’t matter; she wouldn’t enroll Casey.”

Fortunately, Casey’s pediatrician told Brenda about Town Daycare, twenty miles away, and they welcomed him with open arms. Brenda says, “[Without the child care experience], we wouldn’t have known how other children would react to him. We wouldn’t have known what he was capable of or how functional he would be with other children, and I think the separation [when he started school] would have been very difficult. We are really grateful to Town Daycare that they took it upon themselves to contact the school and have the teacher that would be Casey’s when he started school come to the child care centre for an entire day to observe him. And apparently it eased her reservations about taking a handicapped child into her class. It really was a first experience for her.”

Both Kaylee and Casey would have been denied admission to most community-based child care centres. Without legislated guarantees to protect both the child and the centre, child care centres have a closet full of excuses, some quite reasonable. They are afraid of hurting a child that they are unprepared to care for, they worry about liability issues, and they need extra supports. Training, liability coverage, additional supports—these are among the ingredients needed to make full inclusion of all children with special needs an ordinary, rather than an heroic, event.

Parents of children with “invisible disabilities,” particularly behavioural and emotional challenges, often face insur-mountable obstacles in finding—and keeping—a child care space.

As one mother told SpeciaLink, “Every time I go to the child care centre to pick him up, I’m afraid they’ll tell me he can’t come back. People act like it’s my fault [he’s difficult], that I am a bad mother. But he’s always been difficult—he was a colicky infant, a screaming toddler. He’s been a ‘terrible two’ for two years now. I don’t really blame the child care staff; he runs them ragged too. But I need child care in order to pay the rent, and there’s no such thing as another option.”

All too often, provincial criteria for extra assistance to child care centres do not include behavioural problems, but only “mental or physical disabilities.”

The bigger issue, of course, is child care itself—regular, community-based child care. There is no hope for inclusive child care so long as child care in general remains at risk. Despite the fact that child care directors and staff members have been remarkably pro-active and resourceful in creating inclusive practice, there is no inclusive policy and the field is stretched to its limits, as A Matter of Urgency demonstrates. Staff are often justifiably concerned that they do not have the capacity to include children with special needs, despite their strong beliefs and attitudes that favour inclusion. After all, they have to balance the needs of all the children in their care.

Strategic partnerships have become increasingly important. Parents and advocates for children with special needs have come to understand that advocating for inclusion also means advocating for high-quality, accessible, affordable child care for all children. In a similar manner, child care advocates understand that parents and advocates for children with special needs can be powerful allies for quality child care.

Public policy has lagged behind the reality of inclusive child care. Policy-relevant Canadian research, such as You Bet I Care!; A Matter of Urgency; Inclusion: The Next Generation; and work from the Roeher Institute’s Children and Family series, provide the necessary evidence to help advocates make their case to politicians and policymakers. Many advocates have created inclusive centres and then challenged governments to fund their services. While short-term job-creation initiatives—for example, the Local Initiatives Program (LIP), Canada Works and summer student grants such as SEED—have often provided additional human resources and social capital for innovation, we cannot build a dependable child care system on grants and political promises.

What we need is Canadian legislation—both federal and provincial—to ensure that children with special needs are included in early childhood development services, especially community child care centres. It is essential that public policy in all federal/provincial/territorial agreements and in every province and territory go beyond “encouraging” inclusion to providing the legislation, leadership, funding, and supports to make it viable for centres and valuable for children. Child care advocates should not have to keep working hard just to protect their front-line gains from the whims and vicissitudes of governments operating in the absence of adequate legislation and policy. And children with special needs should not have to wait any longer to be included with other children.

Sharon Hope Irwin, Ed.D., is Director of SpeciaLink: The National Centre for Child Care Inclusion. She has written numerous books on child care inclusion, including The SpeciaLink Book; Charting New Waters; and Integration of Children with Disabilities into Daycare and Afterschool Care Systems. Her work with the Canadian Union of Postal Workers' special needs project resulted in the book In Our Way: Child Care Barriers to Full Workforce Participation of Parents of Children with Special Needs, co-authored with Donna S. Lero. Dr. Irwin is also co-author (with Donna Lero and Kathleen Brophy) of the book A Matter of Urgency: Including Children with Special Needs in Child Care in Canada, which can be downloaded at www.specialinkcanada.org.

You Bet I Care! A Canada-wide Study on Wages, Working Conditions and Practices in Child Care Centres can be downloaded at www.worklifecanada.ca .

When parents realize their child will never be independent, they may feel overwhelmed. How can they be sure someone who cares will always be there to lend a helping hand? That's the kind of question that prompted fifteen families to create PLAN—Planned Lifetime Advocacy Network. PLAN's Al Etmanski and Vickie Cammack explain why they helped found this non-profit organization and what it does for people with disabilities.

For the first time in history, people with serious disabilities are outliving their parents. Advances in medical technology, improved health care availability, higher social expectations and community living have ensured a longer life for our friends and family members with disabilities.

Our 23-year-old daughter Liz is a good example. Before she was five she had two life-saving operations that would have been too risky just a few years earlier. Nowadays, people with Down syndrome are living on average into their sixties. Compare this with a life expectancy of nine in the 1920s and thirty in the 1960s. There is no reason to believe Liz will not live as long as her siblings.

In the next decade, close to six million families in North America will be caring for an aging relative with a disability. The immensity of this fact is slowly creeping into the consciousness of the disability community and will soon command the attention of government policy-makers and even the corporate sector.

This demographic trend, however, underscores a worry that perches on the shoulders of every parent from the moment we discover that our child has a disability. Although thinking about the future is a natural extension of being a parent, those of us who have a child with a disability must think not only about our own lifetime but also their lifetime. As one parent in Ottawa recently commented, “I need a ‘drop-dead’ plan.” While we all know death is not optional, we tend to ignore the fact that we ourselves will die and that we have no way of knowing how long we’ll be around to care for our children.

As more and more Canadians reach their senior years, pressure is exerted on society’s systems and institutions to respond. This inturn has the benefit of raising awareness of the importance of planning for the future of our sons and daughters with disabilities, regardless of their age—or our age, for that matter.

Fortunately, many families across Canada are developing creative responses to what some people have described as “aging anxiety.” And the solutions are emerging from the age group one might expect: parents who, now in their senior years, are having to confront their own mortality. These men and women, many of whom were leaders in the community-based disability movement that emerged after the Second World War, are not content to just resolve their own future planning challenges. They are also passionate about sharing their pioneering efforts with younger families.

We work for one such group: the Vancouver-based non-profit charity, Planned Lifetime Advocacy Network (PLAN). In 1989 a group made up of fifteen families came together to help each other answer the stark question, “What will happen to our sons and daughters with disabilities when we die?” These parents, whose average age was seventy, created an organization to be a container for their worries, dreams and solutions.

Today, John Ralston Saul is our National Patron and, thanks to the J.W. McConnell Family Foundation and the Vancouver Foundation, PLAN is a national organization with affiliates from coast to coast. It is also inspiring international collaboration with groups of families in the United Kingdom, Australia, New Zealand and throughout the United States.

For far too many people with disabilities, life means being surrounded by paid professionals and support workers. At PLAN we like to think about the future by focusing on what constitutes “a good life.” Instead of asking “What programs or services does your son or daughter need?”, we ask “What would be a good life for your son or daughter?” The responses are rich, unique, often poetic and even spiritual. In general, families’ views of a good life for their family member with a disability include:

To help families create a good life for their family member with a disability, PLAN offers these supports and services either free or for a reasonable fee:

Through a quarterly newsletter, a national magazine, workshops, seminars, peer support and on-line consultation, we provide up-to-date information on:

To be isolated is an enormous tragedy and, as Mother Teresa observed, “a most terrible poverty.” Loneliness may already be the most significant handicap experienced by our family members with disabilities, and their loneliness may become even more of a threat after we are gone.

To reduce this isolation and loneliness, PLAN facilitates the development of a Personal Network for people with disabilities. We have discovered that, not only is it important for them to be in relationship with several people, but it is also important for each person in the network to be connected to each other. In this way, a Personal Network truly creates ties that bind. We have also learned that everyone, regardless of age or disability, can be welcomed into friendship. This has become an important source of hope and inspiration for aging parents as they watch the members of their son’s or daughter’s Personal Network becoming their eyes and ears, arms and legs.

The ultimate support we offer families is a Lifetime Membership. We commit as families ourselves to oversee, monitor and ensure the well-being of members with disabilities when their parents become infirm or die. This commitment is bolstered by a protective covenant ensuring families will always be in control of the organization. PLAN’s commitment to its members is also protected by our financial self-sufficiency; we have no ongoing reliance on government or corporate funding. PLAN is, in effect, the parent-based backup to the plans that each family makes.

PLAN has evolved from its initial appeal to older families so that we now also support families with young children. Aparticular joy is our “Spinoza the Bear” program which provides each child with a talking teddy bear and their families with a PLAN membership and connection to other families dealing with the same challenges.

“Hands-on” practical advice and support to families have always been the nuts and bolts of what we do at PLAN. Over the years, however, we have come to realize that we also offer something equally important, though less visible: inspiration. The most vital consideration for all of us is not how long we will live but how well we will live. Planning for the future is the best excuse for changing the present—both for the individual with a disability and for their family members.

Al Etmanski, PLAN's Executive Director, can be reached at aetmanski@PLAN.ca. Vickie Cammack, Executive Director of PLAN Institute for Citizenship and Disability, is at vcammack@PLAN.ca. (See Disability Resources for more information about contacting PLAN.)

What is a
Personal Network?

"A Personal Network is a group of men and women who voluntarily commit to support a person who is at risk of being isolated and vulnerable by reason of their disability … or society’s perception. A Personal Network is the bridge between living on the edge of community and active inclusion and participation. A Personal Network welcomes and connects people to the heart of community. Through their relationship they offer support, advocacy, monitoring and companionship.

"Members of a Personal Network can include family members, particularly brothers and sisters; as well as neighbors; members of church congregations, service clubs and recreation groups; former service providers; teachers; and school friends. Virtually anyone can be a member.

"If for some reason network members leave and the network collapses, PLAN will dedicate staff resources to renew the network and provide personal support and backup until the network becomes healthy again."

—Al Etmanski, A Good Life—for you and your relative with a disability

Michael was a middle-aged man when his mother came to PLAN. Marie knew her health was declining and she knew that Michael, who has an intellectual disability, would be alone in the world without her. She and Michael decided to actively create a Personal Network (circle of support) for him. After Marie passed away, Michael certainly missed her but his Personal Network has helped him cope. He says, “They give me hope, love and encouragement, which I really need now that my mother is dead and gone up to heaven.”

I work for PLAN (Planned Lifetime Advocacy Network), where we support individuals with disabilities and their families to move forward into the future. Early on in our work with people like Michael and Marie, we realized there would be no future—or at least not a future anyone would want—if friends and relatives were not part of it. We also realized that the vast majority of people coming to us were, like Michael, very isolated, with few if any friends.

Actively facilitating relationships has to be a key element of preparing for the future. And, of course, friendships are also key elements of living in the present. In fact, many people who have a PLAN Personal Network would equate getting a network with getting a life.

At PLAN we like to focus on the future by thinking about what constitutes a good life. Personal Networks contribute to what virtually all us of would call a good life in five very compelling ways. Clearly, having a group of friends and supporters provides the emotional support and encouragement that each of us needs. Personal Networks also provide practical, hands-on assistance with the tasks of daily living. Perhaps less well-known however is the fact that Personal Networks also play a crucial role in the health, wealth and citizenship of people with disabilities.

Emotional support is probably what most of us think of when it comes to friends and families. Most of us cannot imagine life without our friends to share our joys when times are good and to lean on when times are tough. So too, PLAN’s Personal Networks are great sources of encouragement for people with disabilities. There is nothing like having the support of a group of people who believe in you when you need to gather the courage to take on a new challenge. Our networks have been there for people with disabilities when they have needed to brace themselves to start a new job, go back to school, move to a new home, or simply to meet someone new. The emotional support of network members is the catalyst that liberates them to see themselves as competent and capable of achieving their dreams.

Our networks also support people through traumas such as substance abuse, episodic mental illness and personal loss. For example, when George’s mother became ill, his network knew he would need a lot of support to prepare for her death. They collaborated with George to create a video of his mother’s life. When she died, this amazing group of men and women adopted the motto “Never alone.” And indeed George was never alone during the first month after his mother’s passing.

Most families are acutely aware of the innumerable things, small and large, they do for their relative with a disability. These can range from filing income tax returns to buying the best-fitting brand of underwear. Often it is these personal details that families are most uncomfortable about leaving to paid caregivers. At PLAN, Personal Network members provide all kinds of practical help to their friend at the centre of the network. Network members are the ones who notice if the coat is getting threadbare and who make a quick trip to the mall. They help write Christmas cards, make sure the neighbours are happy and the doctor’s instructions are followed. They have even been known to clean the toaster and take the cat to the vet. In short, while we all know a Personal Network can never replace family, they are the next best thing.

One of the issues families are most concerned about in thinking about the future is the health of their relative. Painstaking and important work is often done by a family member to make sure all the details of medical treatment over the years are documented and shared. Clearly, having a network member in the know is critical to ensure the continuity of care.

There is also another, often-overlooked, role that Personal Networks play in safeguarding the health of the person at the centre of the network. Research into the mind-body connection shows conclusively that people with a supportive social network live longer, get sick less often and heal more quickly than people who are isolated. The old maxim holds true: a good friend is the best medicine. Ensuring there are involved friends and loved ones is a crucial task for any family worried about their relative’s future health.

Planning for the future always involves discussing financial resources, and having an adequate income is certainly a critical element in anyone’s future. When we began our work with PLAN of course we knew that money alone can’t buy happiness or success but initially the seductive power of money had us thinking that wills and estates were the most important things to address in future planning. They seemed so concrete and practical, and frankly easy compared to the intangible world of relationships. Since then, the concept of social capital has emerged and is beginning to place a value on the difficult-to-measure benefits of relationships.

Social capital is both the number of our relationships and the depth of the trust, reciprocity and shared values in those relationships. Our supply of social capital directly affects our choices and opportunities. Research is finding that having a good stock of socialcapital enhances our job prospects, our ability to learn, and our safety. Alternatively, if we lack social capital our locus of control is diminished and we are more likely to need social services. Social capital may well be the most important source of wealth a person with a disability can have. Creating a Personal Network is a strategic way to increase their social capital.

It is fair to say that the term “citizenship” does not often come up when working with families and individuals to plan for the future. Instead they use phrases like “making a difference,” “doing something meaningful,” “having a reason to get up in the morning,” and “making a contribution.” When you think about it, giving, contributing, and making a difference are all at the very heart of citizenship. At PLAN we believe contribution equals citizenship.

People with disabilities, along with other marginalized people, have made enormous strides in securing their rights in the past two decades. The battles won, the laws passed and the policies written have been extremely important milestones on the road to citizenship. You might say people with disabilities are half way down the road to citizenship. Now it is time to travel the other half—not rights, but obligations or contributions.

Relationships are the ticket to the contribution side of the journey to citizenship. Social capital can help to secure employment, which can be one path to contribution. But there are many other unique and crucial contributions that people with disabilities can make. Time and again network members tell us that their friendship with the person at the centre of the network helps them see the meaning in their life. They say things like, “Her presence grounds me. It is a real gift since I get so caught up in the doings of life.” And, “He reminds me that we all have needs for each other that we don’t even realize.” Network members use words like “inspiration,” “courage” and “creativity” when they talk about what they receive from their relationships with people with disabilities.

Someone once said vocation is where our deep gladness and the world’s deep hunger meet. Surely most of us are hungry for meaning in our lives, surrounded as we are by today’s culture of individualism and greed. The contributions of people labeled “disabled” have never been more needed. A Personal Network provides opportunities for them to contribute and is one of the most profound legacies of a plan for their future. For the people at the centre of a Personal Network, contributing their unique gifts equals living a life of meaning. For the rest of us, the privilege of receiving these gifts is an opportunity to become truly human.

Vickie Cammack is a co-founder of PLAN and the Executive Director of PLAN Institute for Citizenship and Disability. She developed and directs PLAN's Personal Network Program and assists communities internationally in their efforts to develop similar organizations. She is co-author (with Al Etmanski) of Safe and Secure—Six Steps to Creating a Personal Future Plan for People with Disabilities.

At its core, PLAN is an acknowledgement of the giftedness of all citizens. PLAN is a way of looking at individuals and seeing the best they have to offer, then finding ways these gifts can be shared.

“But my child is very disabled. What could they contribute to community? Who would want to be in relationship with them?” These are not uncommon questions. Let me share a story about my son.

Joshua was born healthy. At five months, he acquired an uncontrolled seizure disorder that left him medically fragile, with intellectual disabilities. When Joshua entered grade seven, the school had enough grade seven students to form two classes. The teachers for both classes were men, sports enthusiasts to boot. As jocks, they decided to select their students as baseball captains select players for a pickup game but without the kids being present.

The other teacher was dumbfounded. “Why, of all the kids you could have selected, would you pick him?”

Jeff replied, “I’ve noticed Joshua over the past year—how the other children speak to him, how they play and interact with him. I’ve noticed that the children are kinder and gentler when in his presence. I want Joshua in my classroom because believe he will help create a kinder, gentler class.”

Every person has something valuable to offer. This way of thinking is not specific to people with disabilities. PLAN consciously creates opportunities for citizens to experience and share in the gifts of individuals we call “disabled” but this way of thinking is also showing up in other areas of community. In British Columbia, people are using the PLAN model to form networks around seniors in Victoria, and youth at risk in Port Coquitlam.

PLAN is changing society. It is creating communities throughout the world where people come to know and care about each other. It is turning strangers into friends who are resources for healthy, safe lives.

Ted Kuntz is President of the PLAN Board of Directors, and a marriage and family therapist in Coquitlam, BC.

As the full-time mom of two young children, I don’t have much time to think about the future. (Frankly, the present seems pretty confused!) My daughter, Natalie, is eight years old and exquisitely happy and healthy. My son, Nicholas, is twelve and has many, many needs. He is my comic relief, my baby, my budding teenager, my sports fanatic, my joy and my worry. Nicholas has cerebral palsy, is non-verbal, is partially tube-fed and requires total assistance every minute of every day. That said, he is the winner of a host of awards for enthusiastic participation at school and in clubs.

I began thinking seriously about my future and Nicholas’s when I realized he was surviving his many health challenges and actually growing up as I grow older. I began to fantasize about a future for our family that could include more than just my husband and me caring for and about our son. I began thinking that perhaps, with community support, I could begin to offer my young man some independence and myself a few lifestyle choices.

I happened to chat with my old friend Kathleen Jordan, who had been to British Columbia to explore PLAN and research the feasibility of bringing its networking principles to Ottawa. Immediately realizing that I wanted a Personal Network for my family, I offered to join Kathleen on the Lifetime Networks Ottawa board. LNO, an affiliate of PLAN, is a group of families helping each other plan for the future of their family members with disabilities.

As I advocate for the cause here in eastern Ontario, I learn more and more about the amazing possibilities of self-determination supported with love for Nicholas—as well as “Freedom 55” for me!

A theatre educator by profession, Donna Thomson works part-time coordinating the anti-bullying campaign for Ottawa-area elementary schools. Lifetime Networks Ottawa can be reached at 613-748-7162 or go to www.lifetimenetworks.ca.

L’Arche is an international federation of over 100 communities in nearly 30 countries. At the heart of these communities are people with developmental disabilities and those who share life with them. L’Arche Canada has 26 communities across the country, each made up of 2 to 8 homes, day programs and workshops. 381, Rachel Est, Montreal, QC H2W 1E8; ph 514-844-1661; fax 514-844- 1960; www.larchecanada.org.

The Canadian Abilities Foundation provides information related to disability, especially through its Web site, its magazine Abilities, and a directory of disability organizations. 501—489 College Street, Toronto, ON M6G 1A5; ph 416-923-1885; fax 416-923-9829; www.abilities.ca.

Canadian Association for Community Living (CACL), a national organization of 12 provincial/territorial associations, advocates for people with intellectual disabilities and their families. Kinsmen Building, York University Campus, 4700 Keele Street, Toronto, ON M3J 1P3; ph 416-661-9611 or toll-free 1-800-856-2207; fax 416-661- 5701; TTY 416-661-2023; www.cacl.ca.

Canadian Association of Independent Living Centres (CAILC) is a national umbrella organization of local autonomous Independent Living Resource Centres. 1004—350 Sparks Street, Ottawa, ON K1R 7S8; ph 613-563-2581; fax 613-235-4497; www.cailc.ca.

Council of Canadians with Disabilities, a leading voice of persons with disabilities, advocates to improve the lives of Canadians with disabilities. 926—294 Portage Avenue, Winnipeg, MB R2C 0A1; ph/TTY 204-947- 0303; http://www.ccdonline.ca/.

Planned Lifetime Advocacy Network. (Click here for articles about PLAN.) 260—3665 Kingsway, Vancouver, BC V5R 5W2; ph 604-439-9566; fax 604-439-7001; www.plan.ca (best viewed with Internet Explorer, or Netscape Communicator version 6 or higher).

Roeher Institute, a policy-research and development organization, generates knowledge, information and skills to secure the inclusion of people with intellectual and other disabilities. Offers extensive information services to the public, including thousands of books and reports in a specialized library. Its own publications include a Children and Family series. The Roeher Institute shares space with the CACL. See above for contact info. www.roeher.ca

SpecialLink, The National Centre for Child Care Inclusion, works to expand opportunities for inclusion in child care, education, recreation and other community settings for young children with special needs and their families. A resource and research helpline, SpeciaLink responds to individuals’ questions, and provides referrals, technical assistance, newsletters, fact sheets, books, videos, and a speakers’ bureau. P.O. Box 775, Sydney, NS B1P 6G9; ph 902-562-1662 or toll-free 1-800- 840-LINK; fax 902-539-9117; www.specialinkcanada.org.

Disability Research Information Page (DRIP), Canadian Council on Social Development: www.ccsd.ca/drip/

Disability WebLinks (central access to Canadian government and related services): www.disabilityweblinks.ca

The Vanier Institute of the Family
94 Centrepointe Drive
Ottawa, Ontario, Canada, K2G 6B1
Tel: 613-228-8500 Fax: 613-228-8007
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