“Don't give up”: Employment experiences of individuals with amyotrophic lateral sclerosis who use augmentative and alternative communication

Abstract

A focus group discussion was conducted on the Internet to investigate the employment experiences of five individuals with amyotrophic lateral sclerosis (ALS) who required augmentative and alternative communication (AAC). Information was gathered in the following areas: (a) the benefits of and reasons for continuing employment, (b) the negative impacts of employment, (c) the barriers to continued employment, (d) the supports required for successful employment outcomes, and (e) recommendations proposed for employers, rehabilitation professionals, manufacturers of assistive technology, the government, and individuals with ALS themselves to facilitate employment. Factors described as important to the participants' continued employment included the nature of employment activities, necessary supports to employment activities (e.g., the availability of information and services), and access to appropriate communication systems.

• amyotrophic lateral sclerosis (ALS)
• assistive technology
• augmentative and alternative communication (AAC)
• degenerative neurologic disorder
• employment
• focus group
• Internet