Institutions and deinstitutionalization


History of Leadership in Developmental Disabilities: A Wiki Project

Uses Web and Wiki technology to collect, preserve, and share the history of leadership in the developmental disabilities field over the past 150 years, and pass on to future leaders the stories of how we got to where we are today. The project is creating an online history course and repository documenting the role of leadership and leaders in generating the ideas, movements, and programs that have been foundational to the developmental disabilities field, and using Wiki technology it will engage others in contributing to the multimedia content of the history course.

Staff: John D Westerman, Shawn C Lawler, Jerry W Smith

Collaborators: MENTOR Network Charitable Foundation Web Site on Person-Centered Services for Persons with Developmental Disabilities

Provides resources and information on leading-edge, person-centered supports for use by individuals with disabilities, families, advocates, government officials, and service providers, in a wide variety of topical areas from across the country.

Staff: Kristin Dean, John D Westerman, Amy S Hewitt, Claire Cunningham, Roger Stancliffe, Nancy J McCulloh, Beth E Fondell, Angela N Amado, Jerry W Smith, Sheryl A Larson, John G Smith

Collaborators: National Association of State Directors of Developmental Disabilities Services, Human Services Research Institute

Normalization Principle and Wolf Wolfensberger Project, The

Produces a 56-minute (one-hour broadcast time slot) documentary on the work of Dr. Wolf Wolfensberger, an influential American academic and sometimes controversial leader in the reform of human services, particularly services to people with developmental disabilities. Through interviews with Dr. Wolfensberger and many of those he influenced beginning in the early 1970s, we will explore the Principle of Normalization, ideas that began the deinstitutionalization of people with disabilities, the concept of Social Role Valorization, citizen advocacy, and the history of services and perceptions of socially devalued people. Though Dr. Wolfensberger has had a long and distinguished career, this documentary will focus on his contributions of the 1960s and '70s, with particular emphasis on normalization. Phase 1 of this project occurred in October 2009 and include interviewing Wolf Wolfensberger and colleagues over four days in Syracuse, NY. Phase 2, to include additional interviews, research, script development, and production, is contingent upon funding.

Staff: Jerry W Smith

FISP: Supporting Individuals and Families Information Systems Project

Establishes and refines a comprehensive program of annual data collection from states on family support, and conducts longitudinal data analysis, policy studies, and dissemination activities to better understand and promote effective supports for families and individuals with intellectual and/or developmental disabilities (IDD) who direct their own support. The data gathered will be used to help federal and state agencies understand the current status and emerging trends in supporting families and individuals with IDD living in homes of their own or with family members (including consumer direction). It will also be used to compare and contrast services and expenditures targeting the person with IDD versus those targeting the family members with whom they reside, and to compare services for children versus services for adults with IDD.

Staff: Kristin Dean, Amy S Hewitt, John N Reagan, Heidi Eschenbacher, Yoshiko Kardell, Lynda L Anderson, Sarah E MapelLentz, Sheryl A Larson, Sandra L Pettingell

Collaborators: National Association of State Directors of Developmental Disabilities Services, Human Services Research Institute