Inclusive Evaluation: Conducting Program Evaluations With Individuals With Cognitive Disabilities

Abstract

Individuals with cognitive disabilities (IWCD), such as developmental disabilities, traumatic brain injuries and dementia, make up over 4% of our population in the United States. This number is expected to grow as our population ages, particularly in the cases of disability caused by dementia and stroke. IWCD have been historically marginalized through the suppression of their voices and a lack of power over their own lives. While the advocacy movement has helped IWCD achieve self-empowerment and abolish the inhumane research practices of the past, the inclusion of IWCD in program evaluations has been limited. Exclusion from evaluation means that IWCD have less influence over the programs and services on which they rely. This study examined the extent to which and in what ways IWCD have been included in evaluations, the common obstacles to inclusion, and why evaluators do or do not include IWCD in their evaluations. Using a mixed-method approach, the researcher conducted over 500 surveys and 12 interviews with evaluators, primarily with members of the American Evaluation Association, who have a wide range of experience working with IWCD. The results show that evaluators believe including IWCD in evaluations is an ethical necessity, but many evaluators do not know how to identify or accommodate IWCD. Many evaluators have not considered including IWCD in their evaluations as participants or on their evaluation teams. Additionally, concern over resources, ethical review, and validity limit inclusive practice. Evaluators who have conducted evaluation projects with IWCD have faced these challenges and offer solutions and reassurances. The dissertation concludes with several recommendations for increasing inclusion in the evaluation field.