"Don't give up": Employment and Individuals

with Amyotrophic Lateral Sclerosis

David McNaughton, Janice Light, & Linda Grozyk

The Pennsylvania State University

At present, we lack detailed information on barriers to employment for individuals who have ALS and who require AAC, and on strategies for overcoming these barriers successfully. To date, only Fried-Oken (1993) has addressed the issue of employment for individuals with acquired neurological disorders such as Amyotrophic Lateral Sclerosis (ALS).

Because of societal prejudice and the unpredictability of the course of the disease, these individuals may face special challenges in obtaining or maintaining employment (Fried-Oken, 1993). In order to identify key barriers to employment, and strategies for overcoming those barriers, 7 individuals with ALS participated in a focus group discussion on the World Wide Web (WWW).

During the months of August to October, 1999, seven individuals with ALS participated in an ongoing focus group discussion at a password-protected discussion group on the WWW. Three of these individuals worked and used AAC in the workplace - one as an author, one as a pharmacist, and one as a school administrator. Three had recently worked and were now involved in significant community-building volunteer activities (i.e., software development for individuals with disabilities, consulting to research projects, assisting in fundraising activities). One individual was employed as a financial claims adjuster, and while in need of AAC services, had not yet begun to use a device for face-to-face communication in the workplace.

All participants provided a brief biographical sketch that was used to create an "Introduction Page" on the WWW for the participants. Participants then proceeded to the discussion area, where "Topic Starters" for the focus groups had been posted by the investigators. Participants posted comments and questions about the topics using WebConfer software. Participants were able to read both the comments that they themselves had posted as well as the comments of others. In time, participants posted comments that related not only to the Topic Starters but also asked and answered questions of their peers.

A total of twelve major topics (e.g., "Supports for employment", "Messages for policy makers") were discussed at the site. The 7 participants posted 82 messages. The longest message was 420 words in length; the shortest was only 3: "Don't give up".

The content of the discussion was analyzed using techniques described by Yin (1993). Three key themes were benefits of employment, barriers to employment, and important supports for employment.

Benefits of employment. Whether it was in the workplace or in significant volunteer activities, many of the participants spoke of the importance of staying active. As one participant said, "I do it (develop communication software for individuals with disabilities) to occupy my mind on something other than what the disease has done or will do to me, something over which I have no control". Another key benefit of employment was the need to "feel needed". As one participant commented, "It was important for my mental and physical health to get up each morning, get dressed, and have someplace to go". It is unclear how this group differs from the majority of individuals with ALS, however only two individuals mentioned financial compensation as a reason to work.

Barriers to employment. Many of the barriers discussed by participants related to the attitudes of their co-workers. Although all of the individuals believed that their employers had been strong advocates for their continued employment, this attitude was not universal in the workplace. As one participant commented, "I have encountered individuals who, by their actions, appeared to be saying, 'Okay, I acknowledge the horrific nature of your affliction and you have my heartfelt sympathy, but this is a business and we should not subject our customers to your infirmity"; you've fought a good fight now go home!' They are not malicious and are usually quite polite. Yet their lack of emotional or any other kind of support sends the clear message that business is for the healthy". Some participants raised the question of whether employers and co-workers find it more difficult to work with individuals with progressive disorders with an unpredictable progression (such as ALS) rather than congenital disabilities in which the nature of the disorder is better understood.

Supports to employment. The participants spoke of the importance of a strong network of friends and relatives. As one individual who continues to work as a claims negotiator wrote: "I could not do it without the support I get from a whole lot of friends and relatives who put me to bed, feed me, toilet, wash, and dress me, and drive me and my power wheelchair to work every day". In many cases, participants spoke of highly supportive employers. As one individual wrote, "I work for a company that actually believes in supporting the individual who wants to remain a contributor to the company as long as possible. My company actually is quite impressed with my resolve to continue and is solidly behind me, right up to the CEO " . It should be noted that the group was made up of individuals who had continued to work after the onset of ALS. It is unclear if the experiences of these individuals is representative of the larger population of individuals with ALS, who may not have received the same level of support from their employers.

Employment and the opportunity to contribute to society plays a key role in the lives of the individuals who participated in this focus group discussion. The available research on employment of individuals who use AAC has focused primarily on the employment experiences of individuals with congenital disorders such as cerebral palsy and autism (Creech, 1993; Light, Stoltz, & McNaughton, 1996; McNaughton, Donohoe, & Williams, 1997; Odom, 1997; Wolf-Heller, Allgood, Davis, Arnold, Castelle, & Taber, 1996). This research represents a first step in better understanding the barriers to employment, as well as the necessary supports, for individuals with ALS. Future research should investigate techniques for supporting individuals in their use of effective employment strategies, and the evaluation of these support techniques.

Creech, R. (1993). Productive employment for augmentative communicators. In R. V. Conti & C. Jenkins Odorisio (Eds.), The First Annual Pittsburgh Employment Conference for Augmented Communicators (pp. 105-108). Pittsburgh, PA: SHOUT Press.

Fried-Oken, M. (1993). Do AAC users with degenerative neurological disease remain or return to the work force (pp. 73-78). In R. V. Conti & C. Jenkins Odorisio (Eds.), The First Annual Pittsburgh Employment Conference for Augmented Communicators. Pittsburgh, PA: SHOUT Press.

Light, J. , Stoltz, B. & McNaughton, D. (1996). Community-based employment: Experiences of adults who use AAC. Augmentative and Alternative Communication, 12, 215-229.

McCarthy, H. (1986). Making it in able-bodied America: Career development in young adults with physical disabilities. Journal of Applied Rehabilitation Counseling, 17, 30-38.

McNaughton, D., Donohoe, R., & Williams, M. (August, 1997). Job trends for the 21st century: What are the implications for AAC users? ? In R. V. Conti and C. Jenkins-Odorisio (Eds.), Proceedings of the Fifth Annual Pittsburgh Employment Conference for Augmented Communicators (pp. 29-34). Pittsburgh, PA: SHOUT Press.

Wolf-Heller, K., Allgood, M.H., Davis, B., Arnold, S., Castelle, M., & Taber, T.(1996). Promoting nontask-related communication at vocational site. Augmentative and Alternative Communication, 12, 169-178.

For a additional information please contact

David McNaughton, Ph.D.

Assistant Professor

Department of Educational and School Psychology and Special Education

227 CEDAR Building

The Pennsylvania State University

University Park, PA, 16802

Work (814) 865-7159

Fax (814) 863-1002