Participation of Individuals With Developmental Disabilities and Families on Advisory Boards and Committees

Abstract

A participatory action research approach was adopted to explore supports that enhance participation of individuals with developmental disabilities and family members on advisory committees. Focus groups and open-ended surveys were conducted with staff from University Centers for Excellence in Developmental Disabilities and members of their Consumer Advisory Committees. Five themes emerged: (a) individualized supports, (b) financial supports, (c) coordination and communication, (d) leadership development, and (e) value and outcomes. Themes provide practical guidance to organizations as well as highlight broader systemic issues.