AAC Outcomes and Persons with ALS and visual problems
Heather Hill*, Tammy Rupp*, Katya Hill*, and Margie Tucci**
*Edinboro University of Pennsylvania
**Northwest Tri-County Intermediate Unit
Edinboro, PA
Abstract
This outcome study examines data on two clients with Amyotrophic Lateral Sclerosis (ALS) who acquired visual problems during the course of the disease process. The data document the augmentative and alternative communication (AAC) interventions used to maintain access to and user satisfaction with voice output technology as vision deteriorated.Summary
Evidence indicating trends in AAC system use by persons with ALS does not necessarily provide performance or outcomes data for persons with ALS who acquire visual problems during the course of the disease process (Mathey, Yorkston, Gutmann, 2000; Doyle & Phillips, 2001). Clients may find disuse of high technology AAC interventions necessary rather than feel that modifications to present technologies are available. Research as evidence to support alternatives to AAC interventions specific to persons with ALS with visual problems is nonexistent.
Assistive technologies are widely used by speaking persons with low vision disabilities. Basic computer interventions include text and graphic enlargement, on-screen magnification, and speech feedback). King (1999) identifies ten specific human factors relevant to AT success. Human factors that might be considered essential in selecting AAC interventions for persons with ALS and vision problems include: 1) transparency of the system; 2) mapping of system learning; 3) feedback provided; 4) knowledge of technology use that is “in the head” versus “in the world;” 5) prevention of errors.
This poster will present how AAC technology was modified to adapt to changing needs because of deterioration of both fine motor skills and vision. Step-by-step instructions describing the AAC solutions will be illustrated. Use of performance and outcomes data documents communication competence and user satisfaction.
Case Study One
The first case involved a 54 year-old male with stage IV ALS. At the time of the initial evaluation he presented with communication that was not effective without supplemental support of AAC approaches. He actively was engaged in the evaluation and selection of a dedicated AAC system. After nine months of use, the client started to experience visual acuity problems identifying the characters on the AAC system display although his motor skills still allowed for direct keyboard selection. The client was efficient and comfortable with the operational skills required to generate messages, the language application program (LAP) being used, and the flexibility of the LAP to be customized based on his changing needs.
The client provided input into alternative access methods to use when logfile data indicated an increase in error selections and decline in communication rate. In addition, the client started to report eye fatigue and difficulty focusing on the details of the AAC display. Client feedback to both scanning and optical head pointing as a selection technique was extremely negative. In addition, the client expressed a strong preference for enlargement of his display.
The solution to solve access and vision concerns resulted in the use of a large screen television (54” monitor) to project the AAC system display. The LAP used by the client was downloaded into his computer and connected through the video output. A wireless mouse was used to access keys to generate messages. Although this technology solution was not portable, user satisfaction was high. The client and family reported preference for this intervention for detailed information exchanges, communication with visitors or unfamiliar partners, and lengthy interactions. The client maintained use of this solution for five months, through the remaining course of the disease .
Case Study Two
This case involved a 54 year old female with stage V ALS. At the time of the initial session she presented with communication that was not effective without supplemental support of AAC approaches, and she had almost no residual speech intelligible to unfamiliar communication partners. This client had been prescribed a dedicated AAC system which she had never been able to use. At the time of arrival her motor skills had declined to the extent that she was unable to use direct keyboard selection and an alterative access method had not been identified at the time of the initial assessment. In addition, the client had glaucoma and was unable to see the AAC display.
The solution to solve access and vision concerns resulted in the use of a laptop computer with a 12” screen. An AAC alphabet-based language application program was installed and the display enlarged maximizing the display and text size on the screen. The alphabet array selected was designed specifically for scanning efficiency. AAC display was customized to eliminate keys considered nonessential such as computer functions and shift. Messages considered essential to the client were moved to optimal or easily accessed positions on the display. Predictive selection was activated. Significant deterioration of motor functioning limited the switch site to one remaining location. A P-Switch sensor was positioned on the client’s right toe with her right foot stabilized on a wedge to support 1-switch row/column scanning.
Discussion
EBP requires active participation by persons with ALS and the family support system in all processes (Hill, Romich, & Cook, 2003). The clients and family members were actively involved in providing input into the solutions determined most effective for independent communication. Consideration of human factors variables contributed to successful outcomes and avoidance of disuse. Outcomes data indicate that user-friendliness and previous knowledge of technology were highly valued in transitioning between AAC solutions. In addition, both clients expressed a strong desire in prevention of errors indicating that errors caused frustration and a negative impact on communication rate. The outcomes from these case studies challenge practitioners to create high technology AAC systems that may not be standard solutions or readily available when persons with ALS have additional complex components interfering with access. However, when solutions are created with client input, communication can be maintained throughout the course of the disease process.
References
Doyle, M. & Phillips, B. (2001). Trends in augmentative and alternative communication use by individuals with Amyotrophic lateral sclerosis. Augmentative and Alternative Communication, 17, 1667-178.
Hill, K., Romich, B., & Cook, S. (2003). Asking the right questions for evidence-based practice and people with ALS. In Proceedings of the
King, T. W. (1999). Assistive technology: Essential Human factors. Boston: Allyn and Bacon.
Mathy, P., Yorkston, K., & Gutmann, M. (2000). Augmentative communication for individ.uals with Amyotrophic lateral sclerosis. In D. Beukelman, K. Yorkston, & J. Reichle (Eds.) Augmentative and alternative communication in adults with acquired neurologic disorders (pp. 183-232). Baltimore: Paul H. Brookes.
