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The Vancouver Sun
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Reproduced with the permission of The Vancouver Sun - http://www.vancouversun.com |
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| Ron and Susan Whittaker dream that their mentally
handicapped daughter, Stephanie, will one day live in her own home.
Although she will always need 24-hour care, their dream could come true with help from PLAN -- the Planned Lifetime Advocacy Network. The Burnaby-based non-profit organization has harnessed a network of a dozen people committed to Stephanie's welfare and given the family the confidence to say it is time she moved on from group homes where she has spent most of her 28 years. PLAN has come a long way since 1989 when 15 families set out to create an organization to take care of handicapped children when their parents die. Today it serves 4,500 families in B.C. and its family-friendly format is being copied in cities across North America, in part because it refuses to take a dime from government. Financial independence means PLAN can forcefully represent families when they are at odds with government -- it is not biting the hand that feeds -- as well as harness the personal commitment of volunteers rather than relying on government-paid staff. "It is not programs and services that keep a handicapped person safe and gives them quality of life, it is their friendships," said Al Etmanski, PLAN's executive director and the father of a daughter with Down's Syndrome. |
Glenn Baglo, Vancouver Sun / A PASSION FOR HORSES:
Stephanie Whittaker, 28,enjoys the support of Al Etmanski (left), parents
Susan and Ron Whittaker and the Burnaby-based Planned Lifetime Advocacy
Network. |
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| "We believe that the biggest handicap for a
person with a disability is their isolation and their loneliness."
PLAN's primary mandate is to organize personal networks of support, fostering freely given relationships like the ones surrounding Stephanie Whittaker. Stephanie's network includes sisters Alison and Leslie and other family members but also includes PLAN facilitator Linda Pugh as well as a former social worker who has been in her life since she was a child and two people who used to work at her group home. "They have all become close, family friends and they've taken the pressure off of us as parents," said Susan Whittaker, 55. "Now the network makes decisions together." The network ensures there is always someone on hand to share Stephanie's passion for horses, developed when the Vancouver family owned acreage in Aldergrove, and her attachment to the Canadian Special Olympics as a competitor in track and field, swimming and rhythmic gymnastics. The network is also looking for a duplex or triplex for Stephanie where other tenants will also contribute to her well-being. According to Statistics Canada, one in six Canadians have some level of disability and more than one million live with a moderate or severe disability from birth to 64. As medical advances prolong life, there is the emerging phenomenon of parents aging and knowing their children will outlive them. In addition to developing a circle of friends for the handicapped child, PLAN strives to offer families peace of mind through:
In 1996 PLAN organized family protests and successfully rebuffed an attempt by provincial bureaucrats to force handicapped children to draw down assets in trust funds before they could qualify for government benefits. The victory means middle-income families can put money aside in a trust to supplement welfare-level payments to their child and provide extras such as a TV set, a Disneyland vacation, or new clothes. Etmanski says PLAN could not have gone to the barricades if it had been receiving government funding. Another reason the non-profit society jealously guards its independence is to avoid being contaminated by a service-provider mentality. "In our society now, unfortunately, when we see a person with a disability, we immediately assume that they need professional assistance, a program or a service," Etmanski said. "Our attitude at PLAN is how can we connect the individual back into the community. How can we help this person with a disability to follow their passion, to explore their interests." In PLAN's early years, funding was a struggle. As "a recovering social worker," Etmanski winced when it was agreed the families would charge each other a fee for the services they provided. Today he is proud that one-third of PLAN's annual funding comes from the families it serves. Another third comes from legal and financial services providers who recognize that PLAN's families represent a significant market. It is estimated that each Canadian with a disability has at least four adults concerned about their care and interested in a financial institution sensitive to their special circumstances. The rest of PLAN's funding comes from charitable foundations, such as The Vancouver Foundation, which recognize that PLAN is more accountable to its constituency than the typical non-profit organization supported by government. Foundation support also subsidizes the cost of managing networks -- about $800 initially and then about $200 a year -- for people with disabilities who have no families or whose families earn modest incomes. PLAN's novel approach to disability is detailed in Etmanski's new book, A Good Life, which appropriately opens with a chapter encouraging parents and siblings to talk about building and sharing their vision for the future. "We have learned that if you plan for the future when you are not around, in fact, you change the present," Etmanski said. "Families tell us that if they get their will done, set up their trust, look at home ownership possibilities for their child, build a personal network of relationships for their child, then their own life as a parent changes -- they have a good life -- and the life of their son or daughter with a disability changes dramatically as well. The disability diminishes." PLAN's faith in family and friends is reflected in subsequent chapters dealing with building relationships for the child, creating a home, and encouraging the passions and interests of the child. Other key chapters help with developing a will and estate plan, and alternatives to guardianship for vulnerable people, including B.C.'s new representation agreements which give status to family or friends to support the handicapped person without stripping the individual of their rights. PLAN is located at 3790 Canada Way and can be reached at (604) 439-9566 or on the Internet at http://www.plan.ca A Good Life is published by PLAN at $39.95. |
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