Tash2011 Creating User Friendly Materials With Self Advocates

Creating User-Friendly Materials With Self Advocates:

Partnerships And Processes

introductions

• Susan Stanfield, Director, Quality Assurance and Communications, susan@spectrumsociety.org

• Shirlane Colban, spcolban@yahoo.ca

– With Lanni Sulje, lsulje@spectrumsociety.org

• Shelley Nessman, Consultant, Strategic Initiatives, Spectrum, shelley@spectrumsociety.org

• Aaron Johannes, Director, Research, Training and Devlepment, aaron@spectrumsociety.org

• Jule Hopkins, Community Living BC, Safeguards & Service Accountability Jule.D.Hopkins@gov.bc.ca (sends her regrets and best wishes)

Introduction: CLBC, Safeguards Project and “Start with Hi” campaign

• Jule’s work in context

• The idea of Safeguards

• “Start with Hi” campaign

– Newspapers

– Website

– FB

– Website

• “icanbesafeonline”

tweet tweet & youtube

Our introduction to safeguards

• Provincial project

• Our interest in community based research

– In growing an alternative voice about possibilities

• Our Personal Support Networks report

– Developed curriculum

• Mixed groups

• Parents

• self advocates

• Staff, out of which came new presentation “the changing role of community supports”

Final report

Working in partnerships

Partners

• With government (Community Living B.C.)

• With self advocates

• With self advocate groups

• With families

• With other agencies

• With other leaders

• With other organizations outside “disabilty” services

Jule, Lorie President PFBC, Aaron

Translation into plain language and graphics with self advocates

• Text heavy documents

• Need for self advocate materials

– Also, if interdependence is the goal, materials that are accessible to new immigrants, people with lower literacy, people who think better with graphics

• People we might want to meet

Little Green Booklet: Met with three groups

• Focus group in Vancouver– worksheets

• Large group in Victoria (100 self advocates) – Small group work

• Provincial focus group– Feedback on last draft– Co-facilitated by David

Pitionyak• Learning how to be an

ambassador for the booklet

Ideas workgroup: Victoria

Focus Group: Vancouver

Rejected Drafts

Feedback Group (Ambassadors): from all around the province

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

Shirlane Colban

• Introduction

• Involved in focus group

• Leader in her own life

• Teacher for us in how she’s developed her own network: an authority

• Arts background

• Honest thoughtful feedback

Shirlane: art

Shirlane: focus group

• How did you feel when you were asked to help out with this project?

shirlane

• 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?

Why do you think it was imporant to the group to make a book people could write in?

A workbook to write in

Why did the group want to have one person to focus on?

Focus on ONE person’s story

Buddy had already appeared in the original document

What Buddy did and who he did it with was a big discussion…

Network includes everyoneBuddy isn’t just acted on; he takes action

What about “We’re not just going bowling anymore!”?

Works in a bar Plays beach volleyball

www.shirlanecolban.com

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

Family stories about informal safeguards

Family stories about informal safeguards

www.icanbesafeonline.com

youtube

Facebook

“Start with Hi” Self advocate FB conversations

Building Personal Support Networks: Barbarah and Zackery's Story

Building Personal Support Networks: Barbarah and Zackery's Story

Building Personal Support Networks: Barbarah and Zackery's Story

capacity collection site

• Came out of “Sharing the Power of Stories” workshops around the province

• Stories were being shared for the first time

• Stories were being lost

• People valued their stories

Aaron: Next steps for Spectrum Research Training and Development

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

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

Next steps for Spectrum Research, Training and Development

www.spectrumpress.com

“books and products by, with and for people with disabilities and those who care about them”

• A “social enterprise”

• Triple bottom line

– Use the strengths of those we support to strengthen our mission

– Make a profit

• Employ those we support

– Build the community(ies) we’re part of

The Goode Life: Memoirs of Disability Rights Activist Barb Goode

New poster set

Adventure stories by People You care About

• Problem solving

– Literacy support

– Emotional support

• Surprises

–People don’t think they’ve had adventures

New project

Inclusive research is happening all over the world

• CHECKING UP ON DES

An investigation into Implementation of Annual Health Checks for people with learning disabilities in Oxfordshire

• Jan Walmsley Associates Ltd with My Life My Choice

www.inclusiveresearch.net

Inclusive research

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

Questions?

• To download a copy of this presentation go to www.spectrumpress.ca