Agency within constraints: How the agency of people labeled with developmental disabilities is constructed in supported living schemes

Jitka Sinecka, Syracuse University


This dissertation is a qualitative research study of two people labeled with developmental disabilities who live in residential settings with various supports provided by local agencies. Scott is 43 years old and lives in a Residential Supported Home with four other housemates and permanent staff support and supervision. Pat is 29 years old and lives in her own apartment with a housemate and support by residential habilitation services. The dissertation describes how Scott and Pat examine their agency, including matters of choice, control, independence and interdependence, and how their agency is constructed and constrained in daily life and interactions with their family members, housemates, administrators, staff members, or other people important to them. It also portrays the staff's point of view and illustrates the challenges faced by staff and agencies in caring for people with developmental disabilities. The research based on interviews and participant observations shows that Scott's and Pat's homes and services retain characteristics of the total institutions described by Goffman fifty years ago even though they are small-scale, individual-centered, and geared towards the goal of independence. The study concludes by summarizing some of the best practices in the care of people with developmental disabilities today and listing recommendations for service providers, direct care workers, families, disability studies scholars, or law and policy makers.