Current Challenges and Future Directions With Terminology: The Impact of Ableism and Identity.

Abstract

Purpose: Since its inception, the National Joint Committee for the Communication Needs of Persons with Severe Disabilities (NJC) has focused specifically on advocating for individuals with significant communication support needs resulting from intellectual disability. The purpose of this review article is to describe the history of terminology used to describe this group of individuals, share the results of a recent survey completed by 102 members of our NJC Network, and discuss the implications of decisions regarding terminology in the NJC's ongoing advocacy efforts.

Method: History of terminology used to describe people with intellectual disability is documented by reviewing the literature, policies, professional organizations, and self-advocacy groups that used various terms from the early 20th century to present day. The NJC distributed a survey to the NJC Network of practitioners, researchers, augmentative and alternative communication users, and family members to gain insights on terminology that should be used moving forward.

Results: Slightly more than half of the respondents to the survey endorsed the term "extensive support needs"; however, support for this term was outweighed by the written comments of the respondents who highlighted the need to move away from descriptions that focus on an individual's needs, and explicitly identify a historically marginalized group of individuals that need a clear direction for advocacy efforts.

Conclusion: As a group, current members of the NJC continue to acknowledge the importance of the language we use to identify an often overlooked group of individuals with severe disabilities when supporting and advocating for access to supports that promote growth and development in communication and participation in society.