Assistive technology for people with amyotrophic lateral sclerosis in Japan: Present status, analysis of problem and proposal for the future

People with severe physical disabilities such as amyotrophic lateral sclerosis (ALS) with respirators have great difficulty in communicating with others and expressing even their most basic intentions and tend to be bedridden. Excellent communication aids for such people have been developed. However, just offering technical support is not enough for maintaining their quality of life (QOL). Broad consideration from the areas of medicine psychology, social science, and technology etc. is required. In this paper, some considerations of the assistive aids for such people are described based on ten years experience with advanced rehabilitation services in Yokohama City, Japan. The concept of "I-world", "You-world" and "They-world" are introduced and applied for the investigation of the client's needs and the future direction of the service. It is our belief that through the use of the appropriate assistive aids, people with severe physical disabilities can return to a relatively normalized social life, i.e. life in "They-world".