"Don't Give Up": Employment Experiences of Individuals with Amyotrophic Lateral Sclerosis Who Use Augmentative and Alternative Communication

Reference:McNaughton, D., Light, J., and Groszyk, L. (2001). "Don't Give Up": Employment Experiences of Individuals with Amyotrophic Lateral Sclerosis Who Use Augmentative and Alternative Communication. Augmentative and Alternative Communication, 17, 179 - 195.

Description of Article:

Amyotrophic Lateral Sclerosis (ALS) is a degenerative neurological disorder. Its effects vary for each individual, making it difficult to plan personal and professional lives (Beresford, 1995).

In this study, five individuals with ALS who used augmentative and alternative communication (AAC) and were employed, provided information on five topics:

• the benefits of employment,
• the negative impact of employment,
• the barriers to continued employment,
• the supports required for successful employment outcomes, and
• recommendations for employers, rehabilitation professionals, manufacturers of assistive technology, the government, and individuals with ALS (p. 179).

The benefits and reasons for continuing employment included:

1. Need for productive activity to feel purposeful, avoid preoccupation with ALS, and to maintain good mental and physical health

The day I started writing again, professionally, my nurse was scared to death. Suddenly, my pulse was racing and my blood pressure was up. For the first year I was on the vent, all I did was watch TV and, as the others have said, that gets old fast. I never thought that I’d write again because I couldn’t use my hands or speak. Being able to write again has given my life purpose, a reason to get up and get going every day". ( Kayla, p. 183)

2. Personal identification with employment

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…". (Julia, p. 183)

3. Positive experiences in the workplace such as a supportive environment, loyalty of coworkers and the opportunity to be with friends

"Luckily, I work for a company that 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. Little do they know that I simply have not learned how to quit yet while I can still do a credible job. So, with so many people supporting my efforts it’s kind of tough not to try". ( Frank, p.183 )

4. Practical benefits of employment such as financial security and access to insurance coverage.

The negative aspects of employment included:

1. Impact on physical health, i.e., decline in medical condition and fatigue.

2. Impact on mental health, i.e., difficulty adjusting to decreased job responsibilities and experiencing negative reactions from coworkers.

"I knew I could no longer do my job when I had to ‘pick my battles’ and not fight for what I knew was right–either with the client or within my company–due to my inadequate speech. But I so enjoyed the stimulation that it took months for me to adjust, months when I came into work and really had no work to do. When I was eased out of my job and left with an empty title and no work to do, it was a real adjustment. " (Julia, p. 186)

 

"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 . . .I wish I had a dollar for every time I heard someone say something like ‘You don’t conduct yourself like someone preoccupied with dying.’ To which I reply something like ‘I don’t need help with dying. I could use your help to live better, though.’ They get the message." (Frank, p. 186)

The barriers to employment included:

1. Technological barriers such as cost of assistive technology, learning demands of assistive technology, limitations of assistive technology, and lack of appropriate fit with AAC device and user

"Let’s face it though. None of the available devices are like real speech. No matter how good DECtalk is, it is still hard to tell a joke or have emphasis. The voices are not my voice, some sound whiney some sound arrogant. And of course, the speed is not like normal speech. So often a moment passes before one can type a comment. And I find it necessary to edit my comments and therefore my thoughts are sometimes over-simplified."(Julia, p. 187)

2. People having a negative attitude toward people with ALS and terminal illness in general .

" 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. (Frank, p.187)

3. Policy and funding barriers such as lack of enforcement of government policies, absence of employer policies to support retraining, and lack of insurance funding for assistive technology

4. Financial barriers such as decreased financial compensation resulting from decreased responsibilities and reduction in disability payments when salary is received

5. Information and service barriers including insufficient number of organizations providing AAC services, lack of knowledge/expertise regarding assistive technology, and inequities in services provided to people with ALS

"Our ALS clinic had no AAC devices or counseling when I was first diagnosed ….My husband and I spent a lot of time and money stumbling around . . . it took me two years to adjust to life on the vent and find the right equipment to be able to work again." (Kayla, p. 188)

6. Barriers related to psychosocial adjustment of people with ALS such as difficulty accepting ALS, difficulty asking for help and physical manifestations/course of ALS

7. Lack of accommodations for wheelchairs

The supports to employment activities included:

1. Government policies such as federal legislation that protects the rights of workers with disabilities

2. Information and service delivery supports such as information supports provided by ALS chapters and other organizations and information accessed via the internet

3. Employer supports such as employer policies that support participation (e.g., retraining, facility accommodations and provisions of technology )

"Both [of my jobs] have made accommodations so I can continue to work. [One] job has given me a designated parking spot, a laptop computer so I can work from home when I want, and they are getting me a TTY with a printer, so I can resume talking on the phone. (Blake, p. 190)

4. Technological supports such as specific device features that support participation (e.g., voice output)

5. Personal support networks such as personal care support, moral support, financial assistance and assistance with transportation

The recommendations made for policy makers included:

1. Enforce laws that support the rights of people with disabilities

"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! (Frank, p. 190)

2. Increase prevalence of long-term care insurance

3. Increase funding of assistive technology

4. Provide options for leasing of equipment

5. Support equipment exchange programs

6. Guarantee access to medical insurance for all

7. Ensure availability of personal care service

8. Ensure availability of transportation services

The recommendations made for employers included:

1. Learn about ALS

2. Facilitate changes in job responsibilities

3. Provide training for new jobs that are more appropriate

4. Support appropriate benefits for employers

The recommendations made for service providers included:

1. Provide ongoing technical support

2. Provide ongoing services as needs and skills change

3. Introduce AAC options early, before decline of natural speech

4. Provide computer training for internet access and communication

5. Increase training of service providers in ALS and AAC

The recommendations made for technology developers included:

1. Decrease learning demands

2. Provide instruction/documentation on the internet

3. Improve quality of speech output

4. Develop lighter, smaller, more portable systems

5. Design more attractive systems

6. Increase diversity of functions in systems(e.g., cellular phones)

7. Increase battery life

The recommendations made for others with ALS included:

1. Seek out and share information about ALS; educate employers and coworkers regarding ALS

"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. (Julia, p. 191)

2. Be knowledgeable: know and understand legislation

3. Recognize that ALS will require changes in job and lifestyle

4. Propose accommodations to facilitate continued employment

5. Advocate for yourself and others with ALS

6. Accept ALS; learn AAC technologies early

7. Make decisions on personal preferences and needs

"Don’t let anyone put a time limit on your life, none of this 2-5 years crap. NO ONE KNOWS, AND IT’S DIFFERENT FOR EVERYONE…Keep your options open, and take it one step at a time. You have to do what feels right for you."(Kayla, p. 191)

Areas for future research include the experiences of people with ALS who are not successfully employed and who wish to be employed, the perceptions of the people in the lives of the people with ALS, and the effect of emotional and social support in increasing self-esteem and employment success (p. 193-194).

FOR MORE INFORMATION:

David McNaughton, 227 CEDAR, Department of Educational and School Psychology and Special Education, The Pennsylvania University, University Park, Pennsylvania, USA. dbm2@psu.edu