This article summarizes the results of a literature review conducted as part of the National Beyond Tokenism Research Study. People with intellectual and developmental disabilities have begun to be included on boards and policymaking organizations. Still, the roles given to them have often been tokens—symbolic gestures that result in presence without genuine inclusion.
To better understand the advances that have been made and the barriers that people with developmental disabilities still encounter, a comprehensive review of the literature on how people with complex and high support needs are engaged in leadership development, public policy advocacy, and community activities were conducted. The analysis identified critical gaps in information about the degree of influence in leadership and organizational decision-making exercised by people with complex needs. These results reflected the need for additional research to understand better how far people with developmental disabilities have moved “beyond tokenism” and into authentic leadership roles, which informed other activities conducted as part of the National Beyond Tokenism Research Study.