Abstract
Purpose. The purpose of this phenomenological qualitative case study was to explore the experiences of advocates who represent organizations that engage in disability policy advocacy. The study investigated the strategies and activities used by disability rights advocates, including those used when advocating for deinstitutionalization of people with intellectual and developmental disabilities (I/DD), and the recommendations for advocates of the deinstitutionalization of individuals who live in large intermediate care facilities (ICFs). Methodology. A phenomenological case study and semistructured interviews were used to explore the strategies and practices of organizations that engage in disability policy advocacy. The researcher used a purposeful sampling approach to interview 5 disability policy advocates with extensive experience for the study. Gen and Wright's (2013) policy advocacy framework was used to guide the development of the interview questions and resulting themes that emerged from the interviews. Findings. Advocacy organizations identified three main activities used when advocating for individuals with I/DD: coalition building, information campaigning, and engaging decision makers. When advocating for the deinstitutionalization of people with I/DD, their strategies included coalition building, information campaigning, and reform efforts. The advocates consistently recommended reform efforts, and to a lesser extent, coalition building as strategies and activities to expedite the deinstitutionalization of individuals who reside in large ICFs. Conclusion. Reform efforts (pilots, demonstrations, litigation) are consistently recommended for future advocacy efforts in support of expediting the community transition of individuals who reside in large ICFs. Recommendations. Future research should explore the activities of advocacy organizations for other populations or in other geographies. This research study has direct implications for individuals who reside in large ICFs and want to move to community living. This study adds to the practice of advocacy in that it will aid the development of future advocates through training targeting practices of successful, highly experienced advocates.