Nothing About Us Without Us: Does Action Research in Developmental Disabilities Research Measure Up?

Abstract Action research—research collaborations between professional researchers and community members to address community concerns—has become increasingly popular in developmental disability research. Advocates of these approaches argue that they reflect the value of including people with disabilities in matters that affect them and generate benefits for people with disabilities and for research. However, it is not clear how well action research with adults with developmental disabilities reflect core action research principles. The authors identified 21 action research projects with adults with developmental disabilities in English‐language referred journals. The authors found that the majority of these projects took place in the UK or the U nited S tates, with individuals with intellectual disabilities, were published in or after 2005, and used qualitative methods to examine research aims on social issues important to adults with developmental disabilities. They reviewed common challenges, facilitators, and indicators of success described by authors and found that relatively few projects can be classified as high on the continuum of shared power. Based on these findings, the authors recommended a continued focus on the accurate understanding and application of action research models, building our knowledge of and evidence base for effective tools, strategies, resources, and personal characteristics for action research with adults with developmental disabilities, adequately funding this research, and pursuing a broader array of research methods. The projects studied herein provide evidence for the promise and possibility of action research with adults with developmental disabilities.