Children with cortical visual impairment and complex communication needs: Identifying gaps between needs and current practice

Purpose: This scoping study sought to establish a baseline for how well the needs of children with cortical visual impairment (CVI) who use augmentative and alternative communication (AAC) are currently aligned with the services available to them. CVI is the most common cause of visual impairment in children today, and AAC methods rely heavily on vision. Yet, the prevalence of CVI in children who use AAC methods is not yet known, and there is virtually no research concerning use of AAC with children with CVI. Our overarching goals were to identify barriers and suggest priorities for improving outcomes for these children. Method: Surveys were distributed anonymously online to professionals from multiple disciplines in different school-based settings and to parents of children with CVI who use AAC. Results: School-based professionals identified many barriers, including a lack of knowledge and skills about CVI and about AAC, limited access to training and experts, and concerns about services being delivered in isolated silos with limited time allotted for interprofessional collaboration and planning. Parent reported that their children (M_age =11years) continued to rely predominantly on body-based forms of communication and lacked access to symbolic language, which, in AAC, is primarily visually based. Conclusions: The barriers to services identified by school-based professionals indicate a need to develop and disseminate reliable information about CVI and AAC, both at a preservice and in-service level and, while doing so, to respect the diversity of stakeholders who need this information, including parents. Future research on what types of AAC approaches support the development of language and communication skills for children with CVI is essential.