Inviting Ourselves to the Table: How Self-Advocates and Families are Changing Policy in Wisconsin Beth Swedeen, WI Board for People with Developmental Disabilities Cindy Bentley, People First Wisconsin Lisa Pugh, Disability Policy Partnership TASH, November 2012
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Inviting Ourselves to the Table: How Self-Advocates and Families are Changing Policy in Wisconsin
Beth Swedeen, WI Board for People with Developmental Disabilities
Work on policy issues at all levels:• How research affects policy asks• Working with legislators and department policy
makers• Mobilizing and supporting grassroots action to
create a stronger self-advocate voice at all levels
Inviting Ourselves to the Table
Inviting Ourselves to the Table
Start with topics most important to self-advocates/families• End the R word• Long-term care enrollment caps• Employment
Inviting Ourselves to the Table
What Self-Advocates and Families can do that the “Professionals” never can…• Explain impact of policy on their daily lives• Talk about what it is like to experience specific
situations (institutional life, sheltered employment)• Propose their own ideas for what makes sense• Make personal connections to their legislators
Inviting Ourselves to the Table
Make it easy to participate and feel supported• Conference calls
• Simple message points
• Sitting down to write testimony together
• Attending hearings and legislative visits together
• Help identify unique role/connection
• Stories: Travis, Terri, Cindy
Inviting Ourselves to the Table
Collaboration: Take Your Legislator to Work
Inviting Ourselves to the Table
Inviting Ourselves to the Table
Identifying local self-advocate/family groups and empowering them to take action• People First chapters
• Parent groups
• Special Olympics/Best Buddy chapters
Inviting Ourselves to the Table
Joint High Priority Issues of Concern•Long-Term Care Quality
•Family Support
•Youth Transition
•Integrated Employment
•Education
•Medicaid
•Transportation
Inviting Ourselves to the Table
Not all effective advocates have to come to the Capitol: Using Surveys to Tell a Broader Story
• Some issues need larger numbers of participants to be compelling
• Statewide representation can steer policy more effectively
Inviting Ourselves to the Table
Self-Advocate State Budget
Inviting Ourselves to the Table
Education Budget Cuts Report
Inviting Ourselves to the Table
Wisconsin Families Forward
Inviting Ourselves to the Table
Strategies for dissemination• Facebook (“Like” Wisconsin Board…)