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Disabled: Living Life to the Full with a Friends Network
By Steve Owad
"If I die, who will take care of my child?"
The question comes naturally to every parent, but with added depth for Vancouver's Chuck Walker,
whose son, Gordon, has autism. When Chuck's wife died in 1988, Chuck knew he had to do something to secure his son's future.
Keith Lawrence has fun with a bean bag toss at PLAN's annual picnic while facilitator Joan Wilkinson looks on
"He was hiding from the world," he says of Gordon, who spent his days holed up in his bedroom, seeing no one, and depending on his father for all of his daily necessities – not a likely candidate for future self-sufficiency.
Fast-forward to 2004. Gordon now lives in his own apartment. He pays the bills by working a job at the local stables.
A robust network of friends provides him with support and companionship that only a few years ago were the sole province of his father. The present is no longer a gloomy thing to be endured, and the future is no longer a promise of dependency and hardship.
The transformation took only three years. Today, Chuck Walker is in his eighties, and he has long since ceased fretting about what will happen to Gordon once he is gone.
A Little Help From My Friends
The catalyst for the change was the Planned Lifetime Advocacy Network (PLAN), which was set up in Vancouver in the early 1990s by Al
Al Etmanski
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Etmanski, a self-proclaimed "recovering social worker" who had hit on a novel idea of caregiving: ask the disabled themselves what they want instead of simply providing them with services and prescribing rehabilitation options.
PLAN helps the disabled develop lifelong "personal networks" of friends, replacing isolation with community participation, ensuring financial independence and, most importantly, giving the disabled – irrespective of the nature or degree of their disability – a say in how they live their lives.
"PLAN's goal is simple," Etmanski says. "We want everyone to have access to 'the good life'."
Achieving that goal means clearing some high hurdles. Thirty-five percent of mentally and physically disabled Canadians need help with day-to-day tasks.
Incomes in households with disabled family members are 25 percent lower than in nondisabled families. A full 65 percent of Canadian parents of disabled children say they receive too little help from the government and citizen groups in dealing with their child's disability.
Meanwhile, the number of North American families caring for disabled relatives is expected to double to more than 4 million by 2030. How can families be helped to ensure a stable tomorrow and combat the loneliness and isolation of today (afflictions that Etmanski contends are harder to bear than the diseases themselves) when they are struggling just to get by?
Making a Break With Tradition
Begin with a new approach. "When we started PLAN," Etmanski says, "we had three founding values: no government funding, complete family control of the (personal networks) process, and a commitment to cultivating relationships for the disabled person."
That means running a citizen organization that takes an entrepreneurial tack and avoids all state funding. When PLAN isn't helping families grow their personal networks, it is 1) developing trust funds and will and estate plans for families who need to care for disabled loved ones after their deaths; 2) sculpting models for tax- and trust-legislation reform to lighten the financial burden on families caring for disabled members; and 3) lobbying governments and legislators to redefine the legal concepts of competence and guardianship, giving the disabled more say about how they live their lives.
Everything hinges on making a break from the traditional way of viewing the disabled. For Etmanski, that happened 10 years ago when he was executive director of the British Columbia Association for the Mentally Retarded (BCAMR).
Lorraine Van Grol and Linda Gourley take part in a drumming circle at PLAN's annual picnic
"I discovered that I was becoming the very dragon that I was out there trying to slay," he says – the dragon being governmental and traditional citizen sector programs forever at the mercy of policy restraints and funding decisions.
"There had been fumbling and halting attempts over the past 20 years to create organizations that would take care of people with disabilities, but it was all very patronizing, and none of the initiatives really succeeded."
At the heart of this "patronizing" approach was (and continues to be) a de facto disregard for the emotional lives of the disabled. While the legal concept of competency hinges on the individual's ability to reason, Etmanski saw that the ability to feel and to understand feelings could function as a basis for the definition of capability.
Citizen sector organizations and state institutions provided services "from the top down," deciding which services the disabled needed and then doling them out accordingly.
Etmanski saw this one-way traffic up close. His daughter Elizabeth was born with Down's syndrome. When she reached school age, he tried to
enroll her in a Vancouver public school but the school board refused to accept her.
A battle of wills ensued, with Etmanski ultimately persuading the board to allow Elizabeth to attend regular classes. By attending public school and getting the same opportunities as her four siblings, Elizabeth had a chance of becoming a good student. She did, and today she studies art at a community college. More to the point, Elizabeth wanted to attend school – but the school board never asked her if she did.
Building Bridges to the Community
The personal network concept works like this: After finding out who and how many people are involved in a disabled person's life, PLAN provides the family with a "facilitator" who is a paid catalyst for building a personal network of friends.
Network members come from all segments of the community. They include family members (especially brothers and sisters), neighbors, members of church congregations, service clubs, teachers, and anyone who has interests similar to the disabled person.
While the network meets as often – or as rarely – as those people involved want it to, each group member spends time with the disabled person alone because the primary goal is to grow long-lasting friendships.
Jamie & Cheryl Forster's network take a boating trip off the coast of Vancouver. Cheryl has passed away since this photo was taken, and the network has been supportive of Jamie
Beyond this, it is a matter of friends helping friends: monitoring medical care and helping to manage financial affairs; finding housing and helping with moving; and communicating with professional care providers and social workers. Other "jobs" are as simple and varied as holding birthday parties, going shopping, and just spending time together.
After the parents die, the networks become the parents' "eyes and ears, arms and legs," providing the friendship and care mentioned above while also serving as advisors to the parents' selected trustees (the people who administer trust funds established during the parents' lifetimes).
For Gordon Walker, the trustees are his father, a friend, and a trust officer at a local credit union. After Chuck Walker's death, any major changes or restructuring of the trust will require the input of Gordon, his facilitator and the people in his network. The overriding goal is to provide continuity of activities and support.
Keith Lawrence and members of his network at PLAN's annual summer picnic
Networks can be as flexible as the people within them. Lyle Lexier, age 43 and living in Vancouver, has autism. His network has nine people, but none of them are family members.
That's because Lyle wanted it that way. Lyle's mother, brother and sister all play central roles in his life, while the network serves as a gateway to another world of relationships.
"This is first and foremost about forming relationships," says Brian Smith, Lexier's facilitator, "not about helping needy people."
So far, PLAN has helped more than 5,000 of British Columbia's 530,000 disabled people form such relationships and move from silent dependency to independence. Although the association has inspired other groups in Canada and the United States to follow its model, not all families embrace the personal networks archetype.
Getting Through the Rough Times
"The biggest challenge is to convince everyone involved that loneliness and isolation are harder on the disabled person than the disease is," Etmanski says. Another potential sticking point – family unwillingness to "let go of" their loved one and share caregiving duties with others – is usually overcome by the fact that family involvement is central to the personal networks concept. When families are involved in everything from the choice of the facilitator to the drawing up of wills and trust funds, they are not letting go of anything; instead, they are building on what they have.
Colin Sawyer and his network attend the Chagall exhibit at the Vancouver Art Gallery as part of his birthday celebration
"Networks build slowly and friendships are fairly sustaining," Etmanski says. "Friends are portals to new friends, and networks are vibrant and dynamic. They develop."
For this reason, there is no need for a facilitator to ask network members to make a commitment right away. When problems arise, the facilitator is there to help.
Network members ultimately do make lifelong commitments, but change is often inevitable. If members leave the network or the network starts to dissolve, the facilitator redoubles his or her efforts and renews the network, providing personal support and backup until the network becomes healthy again.
In Lyle Lexier's case, the process was kickstarted by introducing him to a woman with whom he shared a second language. "When Lyle found out Avril spoke Yiddish, it clicked with me that this might be a new network member," Smith said.
A Flair for Facilitation
The networks model places a premium on the role of the facilitator. "To be a good one, you have to have three essential skills," Etmanski says. "You have to be a good listener, a good asker of questions, and a person who's adept at making connections."
A facilitator can come from almost any walk of life. They range in age from the mid-20s to the early 70s. Some have disabled
David McKinney enjoying the summer with his network
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family members, and many have backgrounds in community support and counseling. Most have at least some post-secondary education, but all have a knack for seeing a disabled person's gifts rather than maladies.
"One of our best facilitators was a woman named Ruth who worked with a paraplegic woman who had limited use of her hands," Etmanski said. "Ruth is an incredible listener.
"After getting to know the woman, she invited some people from Ruth's church to form a baking circle that specializes in pizzas and foods that even a paraplegic can share a hand in making." This was a case of educated brainstorming widening the personal network.
It can take two years of facilitation to get networks to the self-sustaining point. Families generally require 40 hours of facilitation in the first six months, and two to three hours a month after that. The facilitators earn in the mid-range of the counseling scale, which in British Columbia equates to roughly CAD 25 per hour.
Everyone Wins: Making Money and a New Market
How does PLAN pay for all this? Being entrepreneurial is the key.
Roughly half of PLAN's revenue comes from parents in the form of donations, facilitation fees, seminars and workshops (on subjects ranging from estate and tax planning to network building).
PLAN also sells two books written by Etmanski through its Web site: A Good Life – For You and Your Relative with a Disability and Safe and Secure – Six Steps to Creating a Personal Future Plan for People with Disabilities. About 25 percent of PLAN's revenue comes from businesses and the rest from grants and donations.
When approaching businesses, PLAN targets the "future-planning" industry (banks, law firms, financial planners, and insurance companies) and markets its seminars and workshops on disability law, estate and tax planning, guardianship legislation, and related topics.
"When we were starting out, we saw senior citizens being embraced by the business sector as a market, but the disabled were still being ignored," Etmanski said. Today, those same lawyers and financial planners volunteer their time and expertise in PLAN seminars and workshops for parents and citizen groups, delivering presentations in exchange for raising their visibility and reputation in a new market.
Everybody wins: PLAN generates revenues through the workshops; the businesses tap a previously ignored market; and families receive financial and legal advice at a reasonable cost (usually not more than CAD 25 per seminar).
Members keep the beat during a drumming circle at the annual picnic
One fruit of this partnership approach is an agreement made in January with the VanCity Credit Union, Canada's largest credit union. It provides PLAN with more financing as additional PLAN families join.
The deal is a "relationship based on contribution, not charity," says Ted Kuntz, president of PLAN's board of directors. Under the agreement, VanCity donates 0.8 percent of the total amount of deposits held in the credit union by PLAN members to PLAN.
PLAN asks its members (through its newsletter) to inform them about whether they have business and personal accounts at the credit union, and then passes the information to VanCity, which can then develop products and marketing techniques geared toward the new market niche. PLAN also suggests that new member families transfer their mortgages, other investments, and business accounts to VanCity.
So far, PLAN has identified more than CAD 4 million in deposits. VanCity is now targeting the disabilities market (for instance, offering PLAN members an extra CAD 10,000 in free home insurance coverage).
Some efforts also support families who cannot afford the facilitation fees (developing a personal network costs families roughly CAD 1,500 dollars during the first year, and half as much each year after). PLAN recently convinced an auto insurance company to establish a CAD 2 million endowment fund for people who have suffered disabling car-crash injuries. The Burnaby Association of Mentally Handicapped in Vancouver pays for lifetime PLAN memberships for some families, as do other citizen sector organizations.
Persistence Pays
PLAN didn't accomplish all this overnight. It took Etmanski two years to move from initial concept to practical action, and this involved cutting ties to the traditional citizen sector system and government funding.
"I did consulting work for two years to support myself," he said. Meanwhile, he drew on his experience with the British Columbia Association for the Mentally Retarded (BCAMR) and designed will and estate planning workshops to pitch to businesses and families of the disabled. Receiving a three-year government grant – "No strings attached," he stresses – set the wheels in motion. The initial revenue bought time while Etmanski designed future seminars, sought funding, and tinkered with the PLAN business model.
Etmanski wasn't pursuing a lone mission. Jack Collins, the BCAMR's president, was with him every step of the way, and Etmanski's wife, Vickie Cammack, mined her social work background to develop the bulk of PLAN's personal network program, Etmanski said.
Growing PLAN was a matter of persistence and repetition: promote the "personal networks" concept, sell the "disability market" to businesses, court citizen sector organizations, advocate, and repeat. Today, to ensure a high profile for PLAN, its seven-person management team networks tirelessly within the citizen sector and future-planning industries, publishes a newsletter, maintains a Web site, and courts every opportunity to speak with the media and at public events.
Members fill their plates at the annual PLAN Lifetime Members' lunch
The National Film Board of Canada has taken note: it is producing a documentary ("The Ties That Bind") based on Etmanski's books. How long the limelight lasts will depend on how well PLAN maintains its focus.
"The biggest threat to our future operations isn't finding enough money," Etmanski says. "It's the risk of losing our core value of entrepreneurship. It's easy for organizations to drift toward dependency."
Building a Network of Networks
Etmanski prefers a different kind of "drift": sharing PLAN's model with groups across Canada and in other countries (chiefly the United States and Britain). Word of mouth leads most of the groups to initiate contact with PLAN.
PLAN is not seeking to "create more PLANS, but rather to share our experiences," Etmanski says. To that end, after they make contact with PLAN, groups attend its training seminars and receive an operating manual to get them up and running in their own community.
But not just anyone is handed a free do-it-yourself kit. "When a group contacts us, we qualify it first," Etmanski says. "We want to have a relationship with them."
In other words, these groups must share PLAN's core values. Just as facilitators must be able to see the person behind the disability, non-PLAN groups must buy into the concept that fighting isolation and loneliness – not providing funding or rehabilitation – are the two biggest concerns.
PLAN is always happy to share its experience and wisdom with other groups. It's part of the notion that the whole idea is to get by with a little help from your friends.
Contact:
Planned Lifetime Advocacy Network
Suite 260-3665 Kingsway
Vancouver, BC
V5R 5W2
Phone (604) 439-9566
Fax (604) 439-7001
Email: inquiries@plan.ca
Web site: www.plan.ca
Steven Owad has contributed several features to Changemakers since 1998. He currently lives in Calgary, Canada, where he works as a freelance writer and editor. His first novel, Bodycheck (Rendezvous Press), will be published in 2005.
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