Emergency and Disaster Preparedness for Individuals Who Use Augmentative and Alternative Communication: A Pilot Study on Supported Planning Using a Toolkit

Purpose: When emergencies or disasters arise, individuals who use augmentative and alternative communication (AAC) are particularly vulnerable. It is critical that individuals who use AAC are supported to make decisions that impact their own lives and are able to communicate during such a crisis. Preparedness efforts that include a plan around communication needs and supports are necessary for ensuring that individuals who use AAC are able to understand options that ensure personal safety and express their needs during a time of crisis. Method: Qualitative methods were used to identify and describe the experiences of two young adults who use AAC and their caregivers when engaging in person-centered planning intervention sessions to complete the activities of the United States Society for Augmentative and Alternative Communication (USSAAC) emergency/disaster preparedness toolkit. Pre-intervention interviews and subjective, objective, assessment, and plan (SOAP) notes taken after each intervention session were done to describe their preparedness and experiences completing the toolkit. Themes were identified to describe participant experiences and change in their perceived preparedness. Results: Five themes and 18 subthemes emerged from the pre-intervention interviews and the SOAP notes across 14 intervention sessions that captured each participant and their caregiver's awareness of needs, barriers in emergency situations, challenges in completing the toolkit, and actions during person-centered planning with the toolkit (e.g., personalizing communication boards, making a go bag, and scheduling visits with local emergency agencies). Conclusions: This study highlights the need for preparedness activities that are person-centered and account for the communication support needs of individuals who use AAC if faced with an emergency/disaster. Outcomes suggest that these methods were feasible and supported positive change in perceived preparedness in the young adults who used AAC and their caregivers.