ěDonít Give UpîEmployment and Individuals with ALS Who Use AAC

Research Objectives

Qualitative Research Design

Participants

Recruitment Procedures

Participants

AAC Systems

Jobs

ConferWeb 2.1

Procedures

Data Analysis

Coding system

Benefits of Employment

ěMy motivation to continue to work and be productive has a couple of ëdriversí . . . [one of them is] being involved in productive activity to avoid dwelling on myself and my health. Computer solitaire and hours of CNN and the History Channel just donít

ěIt is very hard to give [your job] up as it is more than work: it is a lifestyle, it is a part of oneís identity, it is a place to be with friends and be stimulated.î

Negative Impact of Employment

ěWhen I was working with ALS I took no sick days, came in on time and felt I had to prove that I was fit for work.î

ěThere is definitely a ëstigmaí attached to receiving a terminal diagnosis. The first thing most people think about is separating the terminally diagnosed from the rest of the workforce, lest he/she would depress them in some way and damage productivity.

Barriers to Employment

ěI have encountered individuals who, by their actions, appeared to be saying, ëOkay, 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;

ěIn my case, my insurance policy specifically excludes paying for an augmentative communication device.î

Supports for Employment

ěIn addition to the restroom and other facilities modifications needed to accommodate my presence on-site, my company has made it possible for me to work from home if I choose. However, the absolutely crazy thing that my company did to assure my continui

Recommendations to Policy Makers

ěMy message to policy makers would be that, while the diagnosis of ALS points to a terminal outcome, for an indeterminate time our focus will be on maintaining quality of life with or without adjustment. During that time policy makers owe you and me suppo

Recommendations to Service Providers

Recommendations to Technology Developers

ěThere are some bugs to work out and though it is clear that it will eventually work for me, it is taking FAR longer than I expected. Iím sure the manual is great but I canít handle the pages.î

Recommendations to Employers

Recommendations to People with ALS

ěI would . . . read the Disability Act and decide how it can be adapted to your job. That is what I did, and I made up a list of things that would help me handle my job, and which were reasonable and didnít cost much. I was pleasantly surprised when [my e

ěThis [deciding to continue working] is so personal a choice. It depends on what the individualís job is and if maintaining that job presents a danger to others and it depends on family situation and financial situation also. I think I would tell a newly

ěDonít give upî

Limitations of the Study

Future Research

Acknowledgements