"Getting Your Wheel in the Door": Successful Full-Time Employment Experiences of Individuals with Cerebral Palsy Who Use Augmentative an Alternative Communication

Reference: McNaughton, David, Light, Janice, and Arnold, Kara B. (2002). "Getting Your Wheel in the Door": Successful Full-Time Employment Experiences of Individuals with Cerebral Palsy Who Use Augmentative and Alternative Communication. AAC: Augmentative and Alternative Communication, 18, 59 - 76.

Description of article:

Less than 10% of individuals who use AAC in the U.S. are employed (U.S. Census Bureau). In order to gain a better understanding of supports and barriers to employment for individual who use AAC, McNaughton, Light and Arnold created an Internet-based focus group. Eight individuals with cerebral palsy who use AAC and are employed full-time provided information on their experiences in obtaining and maintaining employment. Themes discussed by the focus group included

• benefits of employment and reasons for being employed,

• negative impact of employment activities,

• barriers to employment activities, and

• supports to employment activities.

Benefits of employment and reasons for being employed include:

1. Achievement of success

If somebody asks me why I work full-time, I would ask him or her the same thing. Why wouldn't I work? I'm not rich. Everybody works. Yes, I have disabilities. However, it does not mean that I'm not a human being. Why did I go to school? Why does anybody go to school? It is to learn. Me too. If I did not go to school and do not want to work, what is the difference between a dog and me? Last time I checked, I was still a human being. (Michael, p.65)

2. Positive impact on self-esteem

3. Desire to put mind and education to use

4. Impact on the lives of others with disabilities

5. Financial need

6. Financial independence

I think there are several reasons why I want to be full-time and I would bet they're the same reasons as the rest of the working population. I have dreams of doing different things with my life, like owning my own home, getting married and having kids, going to different places, all of which take money! (Gary, p.65)

The Negative impacts of employment activities included:

1. Fatigue from full-time work

2. Decreased time available for activities of daily living

3. Decreased time available for social activities/personal time

4. Decreased time and energy for advocacy

5. Not recognized as an employee by some coworkers

Barriers to employment activities included:

1. Negative attitudes of society and employers toward individuals with disabilities

But the REAL barriers, in my opinion, are people's stagnant and outdated attitudes toward pwds [persons with disabilities], especially people with speech disabilities. The biggest stigma for a person with a speech disability is that other people perceive us as being retarded. This mentality held by employers in the "Real World" has prevented us (people who use AAC) from showcasing our talents and abilities. (Joe, p. 66)

Michael, a certified special-education teacher with two masters degrees, struggled to find work as a teacher when many uncertified individuals were being hired by school districts. He discussed the reactions of his potential employers to his disabilities despite his credentials:

When people see me, they do not see me. They just see a person in the wheelchair. During the job interviews, they asked me how I would teach students. At that time, I had a teaching credential and advanced degrees. There are so many teachers without any teaching credentials in California. (Michael, p. 66)

2. Low expectations of educators

3. Inappropriate education

4. Limitations of AAC technology

There's one drawback to using AAC: lack of spontaneity. For instance, when I'm on the phone and the person asks me a question that I'm not prepared for, I must type out my question or questions, leaving the person to wait for my response....Whenever I replied to a job ad in the newspaper, they would hang up on me because they didn't understand me, nor did they take the time to understand me. This was very hard on me mentally. Trying to get my 'wheel' in the door was frustrating. (Joe, p. 67)

5. Technological breakdowns

6. Limitations of technology support services

7. Lack of funding for assistive technology

8. Inefficiency of vocational rehabilitation services

9. Under-representation of individuals with disabilities in the Vocational Rehabilitation System

10. Lack of reliable personal care attendant services

11. Difficulty scheduling transportation

12. Long travel time to work

Supports to employment activities included :

1. Personal characteristics such as commitment to employment, strong work ethic, determination, and time management skills

Handicapped employees often value their jobs more and exert extra effort to do a good job. They have difficulty finding jobs and try hard to keep the ones they have. Most of them have especially good work and attendance habits. I was the only social worker who wore a white shirt and tie every day which reinforced my professional image and differentiated me from the clients. Every chance I could, I used vacation time when I was sick in an attempt to keep a good sick leave record. Call it paranoia-maybe? Perhaps, however, some people with disabilities have a healthy kind of anxiety about their jobs that makes them better workers. They may feel that they do not have the option of goofing off that other workers do. (Bruce, p.67)

"I was persistent and a pain in the butt until I got it [the job]. Sometimes you have to be that way." (Brendan, p.68)

2. Education and experience including education background, volunteer experience, and work experience

3. Technology including specific device features that support participation (e.g., voice output), posting resume on the Internet

A web page can be a powerful tool to break the ice before an interview in that they will know what to expect to see when they first meet you. In my first interview after I published my web page I got the job. My vocational rehabilitation counselor asked my new boss why he hired me. Of course he said because of my skills. But secondary he liked that I had the "balls" to describe my disability on the WWW. (Brendan, p.68)

4. Policies and funding such as government legislation (e.g., ADA), government programs (e.g., vocational rehabilitation), government funding for personal care attendants

5. Family supports such as transportation to work and personal care

6. Workplace supports such as mentoring from coworkers and networking with coworkers and supervisors

In addition to the participants discussing the barriers to work and supports within the workforce they made recommendations on improving employment outcomes for individuals who use AAC devices. These recommendations were directed toward other AAC users, educators, technology developers, employers and policy makers.

Recommendations made for AAC users included:

1. Study areas in which you do well

2. Be persistent

Be persistent. You cannot give up! If you know you are trained and educated for the job, you have to fight for it!" (Michael, p. 69)

3. Make use of all available resources for attaining and maintaining a job (e.g., the Internet, vocational rehabilitation services, legal action, and coworkers' expertise)

Recommendations made for educators included:

1. Know abilities of students with disabilities

2. Provide appropriate and challenging instructional activities

3. Prepare students with the necessary skills to be productive adults

4. Inform students about job options

5. Provide opportunities to practice interviewing skills

Recommendations made for technology developers included:

1. Develop a real-time translation program that understands the speech of individuals with speech impairments

2. Develop hands-free access to the on/off option of AAC devices

3. Develop a wider range of easily portable AAC systems

4. Develop a way for users to have private telephone calls

5. Develop an AAC system that can vocalize thoughts

6. Improve the integration of AAC systems and computer technologies through better collaboration between AAC and computer manufacturers

7. Include AAC users on the device development team and pay them well

Recommendation made for educators:

1. Allow individuals with disabilities the opportunity to prove their abilities

Recommendations made for policy makers included:

1. Provide public education to dispel myths about people with disabilities

2. Enforce disability civil rights legislation (e.g., ADA) more rigorously

3. Make income that is spent on attendant care and assistive technologies nontaxable

4. Institute a systematic change of the vocational rehabilitation system (i.e., more personalized services, greater consumer control)

5. Mandate the establishment of Speech-to-Speech outreach services and teach individuals how to use the system

This study documents the successful employment experiences of eight individuals with cerebral palsy who use AAC. The goal is that by building upon our knowledge of important supports and barriers, the employment success that is true for only a handful of individuals today will be accessible to many more in the future.

FOR MORE INFORMATION:

David McNaughton, Department of Educational and School Psychology and Special Education, The Pennsylvania State University, University Park, Pennsylvania. USA.

E-Mail: dbm2@psu.edu