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Creating User-Friendly Materials With Self Advocates: Partnerships And Processes

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introductions <ul><li>Susan Stanfield, Director, Quality Assurance and Communications, [email_address] </li></ul><ul><li>Shirlane Colban, [email_address] </li></ul><ul><ul><li>With Lanni Sulje, [email_address] </li></ul></ul><ul><li>Shelley Nessman, Consultant, Strategic Initiatives, Spectrum, [email_address] </li></ul><ul><li>Aaron Johannes, Director, Research, Training and Devlepment, [email_address] </li></ul><ul><li>Jule Hopkins, Community Living BC, Safeguards & Service Accountability [email_address] (sends her regrets and best wishes) </li></ul>

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Introduction: CLBC, Safeguards Project and “Start with Hi” campaign <ul><li>Jule’s work in context </li></ul><ul><li>The idea of Safeguards </li></ul><ul><li>“ Start with Hi” campaign </li></ul><ul><ul><li>Newspapers </li></ul></ul><ul><ul><li>Website </li></ul></ul><ul><ul><li>FB </li></ul></ul><ul><ul><li>Website </li></ul></ul><ul><ul><ul><li>“ icanbesafeonline ” </li></ul></ul></ul>

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tweet tweet & youtube

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Our introduction to safeguards <ul><li>Provincial project </li></ul><ul><li>Our interest in community based research </li></ul><ul><ul><li>In growing an alternative voice about possibilities </li></ul></ul><ul><li>Our Personal Support Networks report </li></ul><ul><ul><li>Developed curriculum </li></ul></ul><ul><ul><ul><li>Mixed groups </li></ul></ul></ul><ul><ul><ul><li>Parents </li></ul></ul></ul><ul><ul><ul><li>self advocates </li></ul></ul></ul><ul><ul><ul><li>Staff, out of which came new presentation “the changing role of community supports” </li></ul></ul></ul>

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Final report

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Working in partnerships <ul><li>Partners </li></ul><ul><li>With government (Community Living B.C.) </li></ul><ul><li>With self advocates </li></ul><ul><li>With self advocate groups </li></ul><ul><li>With families </li></ul><ul><li>With other agencies </li></ul><ul><li>With other leaders </li></ul><ul><li>With other organizations outside “ disabilty ” services </li></ul><ul><li>Jule, Lorie President PFBC, Aaron </li></ul>

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Translation into plain language and graphics with self advocates <ul><li>Text heavy documents </li></ul><ul><li>Need for self advocate materials </li></ul><ul><ul><li>Also, if interdependence is the goal, materials that are accessible to new immigrants, people with lower literacy, people who think better with graphics </li></ul></ul><ul><ul><ul><li>People we might want to meet </li></ul></ul></ul>

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Little Green Booklet: Met with three groups <ul><li>Focus group in Vancouver </li></ul><ul><ul><li>worksheets </li></ul></ul><ul><li>Large group in Victoria (100 self advocates) </li></ul><ul><ul><li>Small group work </li></ul></ul><ul><li>Provincial focus group </li></ul><ul><ul><li>Feedback on last draft </li></ul></ul><ul><ul><li>Co-facilitated by David Pitionyak </li></ul></ul><ul><ul><ul><li>Learning how to be an ambassador for the booklet </li></ul></ul></ul>

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Ideas workgroup: Victoria

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Focus Group: Vancouver

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Rejected Drafts

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Feedback Group (Ambassadors): from all around the province

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Result: plain language, graphics, coil bound, pocket sized workbook

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Shirlane Colban <ul><li>Introduction </li></ul><ul><li>Involved in focus group </li></ul><ul><li>Leader in her own life </li></ul><ul><li>Teacher for us in how she’s developed her own network: an authority </li></ul><ul><li>Arts background </li></ul><ul><li>Honest thoughtful feedback </li></ul>

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Shirlane: art

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Shirlane: focus group <ul><li>How did you feel when you were asked to help out with this project? </li></ul>

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shirlane <ul><li>One of the important reasons to have you in the first group is that you are known for having such a strong network. You had a lot to teach and share. Why is it important for you to have a network of friends and family? </li></ul>

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Why do you think it was imporant to the group to make a book people could write in? <ul><li>A workbook to write in </li></ul>

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Why did the group want to have one person to focus on? <ul><li>Focus on ONE person’s story </li></ul>Buddy had already appeared in the original document

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What Buddy did and who he did it with was a big discussion… <ul><li>Network includes everyone </li></ul><ul><li>Buddy isn’t just acted on; he takes action </li></ul>

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What about “We’re not just going bowling anymore!”? <ul><li>Works in a bar </li></ul><ul><li>Plays beach volleyball </li></ul>

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www.shirlanecolban.com

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Shelley: http://www.communitylivingbc.ca/policies-publications/publications/safeguards-publications/

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Family stories about informal safeguards

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Family stories about informal safeguards

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www.icanbesafeonline.com

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youtube

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Facebook <ul><li>“ Start with Hi” </li></ul><ul><li>Self advocate FB conversations </li></ul>

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Building Personal Support Networks: Barbarah and Zackery's Story

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Building Personal Support Networks: Barbarah and Zackery's Story

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Building Personal Support Networks: Barbarah and Zackery's Story

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capacity collection site <ul><li>Came out of “Sharing the Power of Stories” workshops around the province </li></ul><ul><li>Stories were being shared for the first time </li></ul><ul><li>Stories were being lost </li></ul><ul><li>People valued their stories </li></ul>

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Aaron: Next steps for Spectrum Research Training and Development

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Return to groups we’d met with to show them what we’d made together

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Return to groups we’d met with to show them what we’d made together

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Next steps for Spectrum Research, Training and Development

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www.spectrumpress.com

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“ books and products by, with and for people with disabilities and those who care about them” <ul><li>A “social enterprise” </li></ul><ul><li>Triple bottom line </li></ul><ul><ul><li>Use the strengths of those we support to strengthen our mission </li></ul></ul><ul><ul><li>Make a profit </li></ul></ul><ul><ul><ul><li>Employ those we support </li></ul></ul></ul><ul><ul><li>Build the community(ies) we’re part of </li></ul></ul>

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The Goode Life: Memoirs of Disability Rights Activist Barb Goode

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New poster set

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Adventure stories by People You care About <ul><li>Problem solving </li></ul><ul><ul><li>Literacy support </li></ul></ul><ul><ul><li>Emotional support </li></ul></ul><ul><li>Surprises </li></ul><ul><ul><li>People don’t think they’ve had adventures </li></ul></ul>

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New project

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Inclusive research is happening all over the world <ul><li>CHECKING UP ON DES </li></ul><ul><li>An investigation into Implementation of Annual Health Checks for people with learning disabilities in Oxfordshire </li></ul><ul><li>Jan Walmsley Associates Ltd with My Life My Choice </li></ul>

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www.inclusiveresearch.net

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Inclusive research

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(Dr. Walmsley) http://janwalmsleyassociates.com/ (Trinity College) www.tcd.ie/niid/research/irn/

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Questions? <ul><li>To download a copy of this presentation go to www.spectrumpress.ca </li></ul>