Tracy Rackensperger

Traditionally, alternative and augmentative communication (AAC) research has been led by researchers without lived experience using AAC. However, it is important to include AAC users as equitable partners to ensure that research addresses their priorities. This scoping review aimed to identify the extent and nature of AAC user involvement in research focused on adults with cerebral palsy (CP) who use AAC. A systematic search identified 57 data-based studies from the last 22 years that focused on adults with CP who used AAC. Seven (12%) of those studies involved at least one AAC user in at least one research process (conceptualization of the problem, design of study materials and procedures, implementation of the study, data analysis, or dissemination of results). The studies provided examples of advisory, collaborative group, and people-led approaches to involve AAC users in these research processes. Most of the studies utilized qualitative methods (n = 5), although there were also examples of survey (n = 1) and intervention (n = 1) research. Strategies from these studies, along with supporting literature, offer practical guidance for involving AAC users in all stages of future research. Building on these insights, this review outlines future directions for advancing inclusive research.

Expanded opportunities for meaningful participation in society now exist for adults with developmental disabilities who need or use AAC, yet significant barriers to full community participation still remain. In this paper, we discuss both personal narratives by AAC users as well as current AAC research in four key domains of adult life: having a safe place to live, participating in meaningful activities, accessing needed services, and developing friendships and meaningful relationships. To support communication and participation in these key areas more effectively, AAC research and development must: (a) strengthen the expression of personal identity; (b) support integrated use of multimodal communication; and (c) reduce the demands of communicative interaction while supporting language and literacy development. Future AAC research and development must be guided by equitable partnerships between AAC users, researchers, and technology developers, and must be driven by the key priorities of people who need and use AAC.

Every individual has a fundamental right to communicate and access equal opportunities to fully participate in society. However, this right may not be fully manifested for individuals with communication access needs especially those from underrepresented groups. This project had two aims, to determine 1) the specific experiences, challenges, and aspirations related to the cultural identities of people of color (POC) who use augmentative and alternative communication (AAC) and 2) how AAC service providers and manufacturers can support POC AAC users in a culturally and linguistically responsive manner. We conducted an online, asynchronous focus group with seven participants over eight weeks. The participants' responses were coded qualitatively. Seven major themes were identified: AAC is a Culture, AAC System Features, Self-Identity as a Person of Color who uses AAC, Experience with Service Providers, Improvements to the Field of AAC, Racial Inequities in AAC Support, and Future Research. Suggestions are provided regarding how service providers and manufacturers can serve as better allies to support POC who use AAC.