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

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)

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

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.

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?

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.

FINDINGS: HOW DID IT HAPPEN? PROCESS

“Learning to Listen and Listening to Learn “

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

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

IMPACT ON THE CULTURE OF PARTICIPATING AGENCIES

More open to feedbackMore accountableValue collaboration with stakeholdersAppreciate parent involvementExample: UCP request for new training

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