Putting People First: Re-Thinking the Role of Technology in Augmentative and Alternative Communication Intervention

Our objective was to develop and validate a new brain-computer interface (BCI) system suitable for long-term independent home use by people with severe motor disabilities. The BCI was used by a 51-year-old male with ALS who could no longer use conventional assistive devices. Caregivers learned to place the electrode cap, add electrode gel, and turn on the BCI. After calibration, the system allowed the user to communicate via EEG. Re-calibration was performed remotely (via the internet), and BCI accuracy assessed in periodic tests. Reports of BCI usefulness by the user and the family were also recorded. Results showed that BCI accuracy remained at 83% (r = -.07, n.s.) for over 2.5 years (1.4% expected by chance). The BCI user and his family state that the BCI had restored his independence in social interactions and at work. He uses the BCI to run his NIH-funded research laboratory and to communicate via e-mail with family, friends, and colleagues. In addition to this first user, several other similarly disabled people are now using the BCI in their daily lives. In conclusion, long-term independent home use of this BCI system is practical for severely disabled people, and can contribute significantly to quality of life and productivity.

The iPad and other mobile technologies provide powerful new tools to potentially enhance communication for individuals with developmental disabilities, acquired neurogenic disorders, and degenerative neurological conditions. These mobile technologies offer a number of potential benefits, including: (a) increased awareness and social acceptance of augmentative and alternative communication (AAC), (b) greater consumer empowerment in accessing AAC solutions, (c) increased adoption of AAC technologies, (d) greater functionality and interconnectivity, and (e) greater diffusion of AAC research and development. However, there remain a number of significant challenges that must be addressed if these benefits are to be fully realized: (a) to ensure the focus is on communication, not just technology, (b) to develop innovative models of AAC service delivery to ensure successful outcomes, (c) to ensure ease of access for all individuals who require AAC, and, (d) to maximize AAC solutions to support a wide variety of communication functions. There is an urgent need for effective collaboration among key stakeholders to support research and development activities, and to ensure the successful implementation of mobile technologies to enhance communication outcomes for individuals who require AAC and their families.