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Part Three: Lifetime Networks’ role as a Change-Agent for Community Development

June 1, 2011

Last year the ever gracious folks at Lifetime Networks in Victoria were nice enough to let me use their organization as the basis for a paper for a class in Community Development that I was taking.   It was so much fun to look at what they do and put it in to this context.   It’s a long paper so I’ll publish it over three months.   Thanks, Wendy-Sue Anderson and LN for permission to share your great work!    Aaron

One way to look at the work of L.N. is through its potential role in the life of a person with a disability.  L.N. delivers the “Spinoza” bear – which talks and sings about difference and inclusion – to the families of newborns diagnosed with a disability, an initial communication that a network of support exists.  Later, they facilitate connections through the “Best Buddies” program  which matches volunteer college and university students with people with disabilities of all ages.   For adults, L.N. offers facilitation of support networks: a network facilitator discerns and connects existing supports and builds on that team to create an autonomous and self-directed support network around the individual which will evolve and change to meet that person’s lifetime needs.   L.N. also organizes and administers “programs” for about 100 people, which involve art, music, drama and recreation.   Creations from these programs are used in public sites to foster awareness (Andrew) and the focus is on self-esteem and giftedness.   New programs continue to evolve to meet unmet community needs: most recently, a weekly potluck dinner has evolved and soon L.N. will begin supporting young adults preparing for adulthood through a citizenship-based curriculum (Andrew).

L.N. makes itself available as a guide through often confusing paths to services either by providing information or facilitating peer connections.   Given that two of the three agency leaders are mothers they are well educated in family-governance perspectives and equipped to lead.   In later life, resources for estate planning and the new R.D.S.P. are available and L.N. liaises with trustees/executors to provide contracts for discerning and experienced oversight (L.N. “About”).   All L.N. services are time-limited contracts with individuals to allow for routine debriefing about what is working and/or not working.   This accountability and fee-for-service in a tradition of “free” government services that have little built-in accountability to families or individuals is another aspect that makes L.N. different.

The L.N. website shares several stories, like that of Sue and her network, which demonstrates an overall asset-focused thinking about individuals and also serves as an example of shared narratives of success that are so important to community organizing.  These are particularly important to this visibly different minority, the possibilities of which are best conveyed through stories of “contributions” and network “members . . . transformed by their friendship” to not only give other families hope and inspiration but “inspire the media” (PLAN):

. . . [Sue’s parents] knew that L.N.V. [formerly L.N. was Lifetime Networks Victoria] could provide support for their family by developing a personal network for Sue which would include caring, committed people who would socialize with her, be there when she required assistance, and advocate on her behalf.

. . .

In time, Sue’s network grew to formally include her aunt and cousin, and also Doris, a member of Sue’s church congregation. Sue and Doris began attending English country dancing classes together. … She soon made new acquaintances, enjoyed the physical exercise, and the coffee that followed!

Previously, Sue spent her time mainly with her parents. As her circle of friends expanded, she was more open to new opportunities. She began to feel more positive, and more confident about learning the life-skills necessary for when the time would come to live independently. She spent time with her network manager and with Doris learning about meal preparation, and followed this up in her home by doing some of the planning and preparing of her own breakfasts and lunches. She was excited about sharing her successes with her parents, and along with Doris, prepared a meal for them to enjoy. …

. . .

Sue’s next goal is to initiate the process of finding suitable housing. Sue is more confidant of her ability to live independently, and is taking steps to develop the necessary skills. … [“Sue’s Story]

Evident in this story is something that L.N. does really well, “to make available a narrative in which others may find themselves rather than a dubious formula for success” (119, Banks and Mangan).  In this they are claiming “the privilege of being the final author of the story we write with our life,” states Jim Loehr – stories previously “owned” by the system, in which service recipients are characterized by deficits and needs, are now the product of a caring and committed facilitator-editor, allowing people to let go of “disengagement” and become “fully present” in their lives and as citizens (13 – 14, Loehr).

Indeed, John Lord almost conflates the ideas of belonging, relationship, community and citizenship, suggesting that with “citizenship, people experience belonging . . . [and] participate with others to create a life of meaning” (135, Lord, 2010).   Lord quotes Mark Kingwell, author of The World We Want, who writes that citizenship meets our “deepest need” to belong and “be part of something larger than ourselves. . . . making concrete the ethical commitments of care and respect, of realizing in action an obligation to aid fellow travelers.”

Sue’s story is a good example of how a network is made up of people with different skill-sets and characteristics, changing as one embarks in other directions with more (or less) certainty.   In relationships, unlike systems, there is a built-in focus on mutual growth, the recognition of different and new dreams based on newly discovered capacities.   This person-centredness differs from a systemic investment in formal assessments to define a constellation of life-long static needs attached to a budget, on which someone’s wages depend.

In terms of Community Development, L.N. is a good example of what Campfens refers to when he writes of Community Development as,

…a form of ‘planned change’ from above within the tradition of societal and institutional guidance; as a form of ‘social mobilization’ from below as a part of alternative development or social movement; or as a form of ‘social learning’ involving professional practitioners working in partnership with community or community groups.  [40, Campfens]

L.N. gives guidance through experiential stories about how things might look, direction as to how things work in the system, and support through creating a network of experienced peers to those who must negotiate it.   They then make available a skilled temporary network leader and a loose recipe for community organizing around the focal person.   This idea of community organizing as “[r]elating the personal to the political, leading to social action,”  is also typical of a growing trend in community development in Western countries (472, Campfens).   Perhaps most importantly, L.N. makes it all look easy, fun, welcoming and attractive.   There is lots of art, friendly intelligent moms proud of all their children and ready with a smile, speaking in plain language and doing what needs to get done: you want to be part of it.  While part of this growth is a political awareness of people with disabilities as a minority with strengths and dreams, the related truth is that a small supportive group can strengthen those already embarked on community change (Byrnes).

Conclusion

In the field of community living (the practice of supporting people with disabilities to live normative lives), we can see an evolution of typical Community Development methods that now leads back to this focus on networks.   Beginning at the turn of the century, people were placed into institutions around North America, a response to difference that came out of the new public school system’s need to group students according to tested abilities, the influence of medical professionals (McLaren) and a culture hopeful for the industrial model, created “institutions . . . [similar to] the factories and warehouses that were at the heart of the developing industrial economy” (232, Sobsey).   Fighting such an “industry” required formal tools – lawyers, investigations, lawsuits, the arousal of public concern about a world behind walls through media exposes (Blatt).

Half a century later, through a newly politicized grassroots family advocacy movement, people with disabilities were returned to their communities and brought with them systemic stories of abuse, investigation into which confirmed that professionals, uniforms, wards, systems, monitoring and an endless stream of dollars do not, to say the least, keep people safe (McCullum).   That people moved from institutions to the care of agencies, from locked wards to group homes, theoretically increased their safeguards, but families and self-advocates were all too aware of vulnerabilities and no longer trusted a system to support their children and siblings.   They continued to create local agencies and advocacy groups, and families still focus on manning the helm in this branch of social services in a way that seems singular, yet often in the end feel disempowered by the very supports they were once the dreamers of (Stainton).

Thus, three things occurred over the same decades – the safeguards-related realisation that systems and professionals do not keep people safe, but people who care do; people moved into neighbourhoods and interacted with peer-citizens and were no longer “other” but now “neighbour” and new relationships began to populate their lives; grassroots family advocacy and self-advocate networks began to insist that people with disabilities can participate anywhere others are invited and that it was up to their supporters to discover better ways to facilitate.

Provincially, L.N.’s activities fit well into the predominating ideas within British Columbia’s social agenda.  Services to people with intellectual disabilities are administered by a crown corporation, C.L.B.C. (Community Living British Columbia) which implemented a “safeguards initiative” (SI) to foster the creation of support networks and relationships as ways of reducing vulnerability, the subject of a recent external review by Dr Michael Kendrick:

The SI represents a particularly noteworthy initiative within CLBC in that it is highly unusual for government to take up issues of vulnerability and safeguards at the breadth and level of commitment shown with this project.  The SI is province wide, involves multiple players at multiple levels, builds on earlier work in the province, and mobilizes both formal and informal resources in a wide variety of collaborative partnerships. There does not seem to be another example of a government entity attempting anything as relevant on this scale and in such an open ended way in any other jurisdiction, thereby making CLBC and its Safeguards Initiative stand out both as a demonstration of leadership and innovation worthy of both evaluation and commendation.  (2, Kendrick, “Independent Evaluation of the Safeguards Initiative”)

L.N., with the same approximate agenda of connectedness as safeguard, was incorporated in 1998.   As in so many things, government follows in the footsteps of far-sighted parents of vulnerable people organizing a grassroots community initiative.

L.N. can also be perceived in the context of other network-facilitating associations around the world.   It is not the largest, the most savvy or sophisticated or the most certain of its mission and politically correct language, but it seems to me a quietly effective and dedicated group of people focused on person-centeredness and taking accountability for a kind of community development.   The most well known national agency is PLAN  (Planned Lifetime Advocacy Network) Institute, an increasingly high profile organization, while the most scrupulous in its self-assessment is perhaps the Australian project “Circles of Support.”   Vela Microboard Association supports legal incorporation of non-profit society “networks” of five or more people which necessarily include the focal person with a disability and can control their own services.  Other researchers, such as the author’s own “Spectrum’s 101 Friends” support network project, focus on examining existing natural support networks to see how these might be deepened and expanded through the creation of do-it-yourself curricula.   The “you gotta have friends” project in Langley, B.C., has a storefront downtown presence and, although supported financially by the local agency for people with disabilities, focuses on connecting all kinds of “friends,” including those with disabilities.  www.tyze.com is a technology-based network development tool that attempts to connect people in a network in ways that are helpful.   Across North America the ever-growing “Best Buddies” program facilitates connections through volunteer matches (L.N.’s one government contract supports the largest group of Best Buddies in Canada).   In England, the “Circles Network: Building Inclusive Communities” leads a multi-pronged approach, to build and strengthen networks.

What makes L.N. different is, I think, the extreme focus on the personal as an agency-wide value, at each level of the organization, a deep commitment to something as simple and clear as “the golden rule”: everyone they are affiliated with is a person, a possible friend and an equal.   This creates a focus on personal accountability, shared narratives of success, keeping things relational, respecting professionals but not more than those they serve, and a consistently personal rather than prescribed response.

L.N.’s community responds to their sense of a mission in a singular way, evident in a recent news article about a fund-raising marathon by a reporter so taken by the agency’s leadership and cause that she became part of their team, “. . . if someone can battle daily to do the things I take for granted, I can get my gooey body to run at least 21 kilometres again. I don’t care if I have to crawl,” she wrote.   She describes the team captain and his experience of L.N.’s services, which “helped him get through school, land a government job and live on his own. . . .  These services can elevate quality of life from merely surviving to truly living and I don’t mind asking everybody I know to support this cause” (North).

In the end, the story that is claimed by Lifetime Networks is a hopeful and inspirational one, and part, I think, of a bigger picture of all kinds of networks for all kinds of people, who might want to look at this successful model.   To return to Jack Pierpoint and Marsha Forrest, “the critical issues of this new revolution of compassion will be to learn how to live with one another” and, they ask, what group of individuals would be “better to instruct us in this new venture than those who have been excluded and rejected in the past” (Pierpoint).

Works Cited

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The original version of this paper was a final project for MAIS (Master of Arts, Integrated Studies) 603, “Community Development,” for Prof. Ken Banks, Dec. 2010.

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