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GRASSROOTS ADVOCACY AND COLLABORATION MAKES POSSIBLE LIVING IN A NETWORKED NEIGHBORHOOD FOR PEOPLE WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIESM a r i t a N i k a F l a g l e r, P h . D . , M S W
A s s o c i a t e P r o f e s s o r a t
S h i p p e n s b u r g U n i v e r s i t y , P e n n s y l v a n i a , U S A
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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)
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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
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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.
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RESEARCH QUESTIONS:
1. What are the ingredients of a successful grassroots advocacy organization?
2. What is the impact of a successful grassroots advocacy movement on its membership?
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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.
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FINDINGS: HOW DID IT HAPPEN? PROCESS
“Learning to Listen and Listening to Learn “
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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
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PROCESS: REDEFINING ADVOCACY SPACERTF 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
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IMPACT ON THE CULTURE OF PARTICIPATING AGENCIES
More open to feedbackMore accountableValue collaboration with stakeholdersAppreciate parent involvementExample: UCP request for new training
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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
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