Don't Give Up:Employment and Individuals with ALS Who Use AAC

Table of Contents

Don't Give Up:Employment 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

"My motivation to continue to work and be productive has a couple of 'drivers' . . . [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 don't appeal".

"It is very hard to give [your job] up as it is more than work: it is a lifestyle, it is a part of one's identity, it is a place to be with friends and be stimulated."

Negative Impact of Employment

"When 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."

"There is definitely a 'stigma' 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

"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 . . . they are resisting the institutional decision to support such individuals [with ALS], and therefore, are impeding our expectation of assisted normal life."

"In my case, my insurance policy specifically excludes paying for an augmentative communication device."

Supports for Employment

"In 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 continuing to work was to arrange for a full-time home healthcare aide to assist me at work. That is unheard of."

Recommendations to Policy Makers

"My 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 support for our expectation of remaining productive as long as possible. This goes to the conventional aspects of ADA, including building access and job retention, as well as to healthcare decisions involving medications and prescriptions, attendant care, durable medical equipment purchases and new drug development. The point is that we need additional help to live with the terminal diagnosis and we ought to be able to rely on the policy makers to provide it!"

Recommendations to Service Providers

Recommendations to Technology Developers

"There 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. I'm sure the manual is great but I can't handle the pages."

Recommendations to Employers

Recommendations to People with ALS

"I 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 didn't cost much. I was pleasantly surprised when [my employers] accepted most of what I had suggested and had some suggestions of their own . . . I would also tell them, not to hide, be honest with your employers, co-workers, family and friends, you need their support. Keep a positive attitude, but you have to face reality, too, just keep a good balance."

"This [deciding to continue working] is so personal a choice. It depends on what the individual's 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 diagnosed person to be honest with his employer and with human resources. By this, I do not mean telling everyone, but people who control your employment destiny have a need to know. I think it is helpful to give these company officials something short to read on ALS so that they don't think you are going to be incapacitated and unfit to work within a very short time."

"Don't give up"

Limitations of the Study

Future Research

Acknowledgements

Email: dbm2@psu.edu