Marita Nika Flagler,Ph.D ., MSW Associate Professor at

1. Grassroots Advocacy and Collaboration Makes Possible Living in a Networked Neighborhood for People with Intellectual and Developmental Disabilities Marita NikaFlagler,Ph.D., MSW Associate Professor at Shippensburg University, Pennsylvania, USA

2. Background: The Residential task Force • Started by frustrated parents who pressured collaboration of agencies. • Response to agency apathy in addressing needs of people with intellectual disabilities (IDD)

3. Composition and structure • Partnership • Parents/family members • Met needs • Unmet needs • People with ID • County ID services management and staff • Provider management and staff • Advocacy organizations • Representatives from school district • Community members • Non- hierarchical structure of power: • Meetings are facilitated by a community member • Leadership shared by a community member and a parent

4. Achievements • The Networked Neighborhood Plan • Secured more than 6 million dollar in funding for home and community services and residential services • Three new day programs with a community participation approach • People were moved to less restrictive residential settings (apartment plus) • 12 new group homes were opened, another one on the way.

5. Research questions: • What are the ingredients of a successful grassroots advocacy organization? • What is the impact of a successful grassroots advocacy movement on its membership?

6. Study Methods • Design: Case study, participant observer, qualitative • Participants: all members of the Residential Task Force (people with disabilities, parents and family members, community members, staff from three disability service agencies, staff from County IDD services) • Data collection process: careful note taking, video-taped interviews with RTF leaders and members • Data collection time frame: September 2006- June 2012 • Data processing: Ground theory, identification of themes and subthemes.

7. Findings: How did it happen? Process • “Learning to Listen and Listening to Learn “

8. How did it happen? Process • Development of a new narrative. • Action-oriented (policy advocacy) • Empowerment of members • Shift in philosophy: search for meaningful inclusion and real self-determination of people with intellectual and developmental disabilities • Success comes from collaboration

9. Process: redefining advocacy space • RTF has become: • A physical space (bringing all stakeholders together) • Example: Meeting with leader of the PA Department of Welfare. • A social space (creating opportunities for networking) • A cultural space (where new values , rights and cultures are created) • An innovative place (new programs are developed: Cumberland Perry Respite Care Program • A learning space • From each-other • With each other • For Shippensburg University students

10. Impact on the culture of participating agencies • More open to feedback • More accountable • Value collaboration with stakeholders • Appreciate parent involvement • Example: UCP request for new training

11. Implications for practice • Successful grassroots community advocacy organizations require: • Time and work to develop cohesion • Redefining advocacy space and using it intelligently to build capacity and sustainability • Spill-over effect to impact the surrounding service community