ERIC EJ902507: AAC, Employment, and Independent Living: A Success Story

2006·0.24 MB·English

by  ERIC

Fall 2006, Vol. 3, Num. 1
AAC, Employment, and Independent Living: A Success Story

Carole L. Isakson
Sheryl Burghstahler
University of Washington

Anthony Arnold
Prentke Romich Company

Abstract: It has been well documented that augmentative and alternative communication
individuals with significant physical disabilities (AAC) are employed (Bryen, Carey, & Cohen,
who use augmentative and alternative 2005).
communication (AAC) face considerable
challenges in finding and maintaining Employment Challenges for Individuals
employment. This article documents the Who Use AAC
experiences of one individual, Anthony
Arnold, a young man who uses a Pathfinder™ In the past decade, several research studies
for communication and a power wheelchair have explored employment issues for
for mobility. In his own words, Anthony individuals who use AAC. In a 1996 study,
shares his experiences growing up in North researchers surveyed 25 adults who used AAC
Dakota and the progression of factors that and who were employed in community-based
contributed to his education and jobs (Light, Stoltz, & McNaughton, 1996).
communication development. External The survey participants identified financial
factors, including access to technology, benefits, interactions with co-workers, and
opportunities to practice independence, and improved self-esteem among the positive
the collaboration of professionals and family impacts of employment. In addition, the
members, came together with Anthony’s financial benefits of employment provide
internal strengths to produce positive individuals with greater autonomy and control
outcomes in employment and independent over their lives (McNaughton & Bryen, 2002).
living. Being employed impacts how individuals feel
about themselves and how they are regarded
Keywords: Augmentative communication, by their neighbors and community (Blackorby
Employment, Disabilities, Independent living & Wagner, 1996; Odom & Upthegrove,
1997). The benefits of employment for
Advances in technology coupled with individuals with significant disabilities who
legislative and policy changes during the past use AAC are clear; yet, the road to
three decades have made employment a employment is not.
realistic goal for many individuals with
disabilities. Nonetheless, in 2003 fewer than Researchers have identified several factors
40% of adults with disabilities between 16 and that contribute to the bleak employment
64 years of age reported being employed outcomes for individuals who use AAC.
(Stern & Brault, 2005). Even more These factors include physical access barriers
discouraging, it has been estimated that fewer to workplace tools and environments,
than 15% of individuals with physical and transportation problems, and personal care
communication disabilities who use
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Fall 2006, Vol. 3, Num. 1
issues (Inge, Strobel, Wehman, Todd, & experiences of one individual with significant
Targett, 2000; Light et al., 1996). Physical and disabilities who uses AAC and who has
communication disabilities place limitations overcome the barriers to employment
on the ability of individuals to perform described previously. It is hoped that sharing
specific employment duties, thereby limiting this story will stimulate ideas and strategies
the range of potential job categories, and, in that can help other individuals who use AAC
turn, making it more difficult to find a good achieve their full potential and help families,
match between the individual’s skills and teachers, and advocates for AAC users
employers’ needs (McNaughton, Light, & support them in their quest for employment
Gulla, 2003). In addition, employers who are and independent living.
unfamiliar with augmentative communication
may not provide applicants with an adequate A Success Story
opportunity to demonstrate their skills and
abilities (Bryen, Carey, & Cohen, 2005). For The individual whose experiences are shared
this reason, networking has been in this article is third author, Anthony Arnold.
recommended as a particularly valuable tool Anthony has athetoid cerebral palsy that
for individuals who use AAC, yet individuals affects all extremities; he has little or no
who use AAC may have fewer network functional use of unaided speech. He uses a
contacts than others (Carey, Potts, Bryen, & power wheelchair and an AAC system to meet
Shankar, 2004). his mobility and communication needs. He
accesses his AAC device with single-finger
Literacy difficulties among individuals who direct selection. The second author met
have severe speech and physical impairments Anthony when she was visiting Camp
have been well documented (Koppenhaver & Courage in Maple Lake, Minnesota. At the
Yoder, 1992; Smith, 2005); many individuals time Anthony was a participant in “Teen
who use AAC have not developed the literacy Camp,” a recreational camping program for
and problem-solving skills that employers are teens with disabilities, primarily physical and
seeking (Bryen et al., 2005; McNaughton & speech impairments. She encouraged Anthony
Bryen, 2002). While growing up, individuals to apply to a program sponsored by the
with significant disabilities receive little Disabilities, Opportunities, Internetworking,
encouragement to explore job options; and Technology (DO-IT) Center. DO-IT
consequently, they often have not planned Scholars is an award-winning program (DO-
adequately for employment nor developed IT, 2006) that helps students with a wide
career aspirations (Odom & Upthegrove, range of disabilities transition to
1997). A lack of prior job experience coupled postsecondary education and employment
with limited social experience may interfere through use of technology as an empowering
with an individual’s ability to fit into the tool (DO-IT, 2005; Kim-Rupnow &
workplace environment. Researchers have Burgstahler, 2004). Once he was accepted, the
reported that some individuals who use AAC first two authors came to know Anthony
lack an understanding of workplace norms through his participation in DO-IT Scholars
and have difficulty adapting to workplace activities, which include summer programs on
culture (McNaughton et al., 2003). a university campus, technology use,
mentoring, college preparation, and work-
Although many AAC users do not reach their based learning experiences. DO-IT is housed
full potential with regard to employment and at the University of Washington in Seattle and
independent living, a few success stories exist. is primarily supported by the National Science
The next section of this article explores the
Assistive Technology Outcomes and Benefits / 68
Fall 2006, Vol. 3, Num. 1
Foundation, the State of Washington, and the states and sometimes get calls from
U.S. Department of Education. Canada. The other Remote
Troubleshooter and I have had great
At the time of the writing of this article, success. People usually enjoy talking
Anthony had been employed for more than to people who actually use the
five years and lived in his own apartment. communication devices on a daily
Because he had achieved a level of success basis…. I’m also often involved in
uncommon for AAC users, the authors product testing, usually six months
thought Anthony’s experiences might provide before official releases. This is
insights that would benefit other individuals something I enjoy being part of. It
who use AAC, their families, and the gets exciting … whenever something
professionals who work with them. An email new is ready to get tested…. My other
conversation began that explored Anthony’s job at the Prentke Romich Company
experiences growing up and his transition to is as a Per Diem Representative for
employment and adult living. Some of the Eastern North Dakota and Western
information that Anthony provided came Minnesota. I offer presentations,
from material he had previously written and demonstrations, and trainings, which
presented (Arnold, n.d.). is something I enjoy doing. I
personally like working with younger
Much of this story is told in Anthony’s own children and give them hope for the
words. As conversations unfolded, the first future.
two authors identified several broad topics to
provide organizational structure to Anthony’s Early Work-Based Learning Experiences
story; those topics include employment,
communication, family and school Getting an AAC user’s foot in the door, or, in
experiences, and independent living. Both this case, “getting your wheel in the door”
external factors (e.g., technology access) and (McNaughton, Light, & Arnold, 2002), can
internal characteristics (e.g., career aspirations) present challenges. We asked Anthony about
are discussed. his employment history and how he was able
to get his wheel in the door at PRC. He told
Employment us that he found his first job while he was still
in high school.
Anthony lives in North Dakota and works for
the Prentke Romich Company (PRC), a My work experience started the
developer and manufacturer of AAC systems summer right before I attended the
and other assistive technology (AT) devices. DO-IT Summer Study in 1994. I was
so encouraged by being accepted to
At the Prentke Romich Company, I’m DO-IT that I felt like I could do
currently a Remote Troubleshooter in anything and accomplish it. I was
the Technical Service Department determined to find a job for the
during the nighttime and weekend summer, so my parents decided to
hours, and I’m able to do this directly give me a ride to Job Services, and let
from my home in Grand Forks with me do my own advocating. Because of
the use of my telephone, computer, my disability, I qualified for a summer
and Internet. I provide technical job-training program for youth. There
support for six models of I attended classes on interviewing
communication devices. I serve all 50 skills and how to hold down a job.
Assistive Technology Outcomes and Benefits / 69
Fall 2006, Vol. 3, Num. 1
Afterwards they placed me in a job at Romich for possible consideration,
a computer store, doing data entry… I and saying that I wanted to be
was at the computer store nearly 2 possibly employed or involved at the
years, where I picked up some Prentke Romich Company in the
amazing technical skills, some of future. I wrote a nice letter
which I'm still using today at PRC. introducing myself and stating my
suggestions and interests… I spent a
After graduating from high school, Anthony couple of years communicating with
enrolled in college at the University of North Barry and several other people in the
Dakota for a few semesters “until I realized field.
that college wasn’t for me at that time.” Soon
after leaving college he returned to Job One thing I would suggest [to other
Services and found a temporary job cataloging AAC users] is that you state your
books at the University of North Dakota wishes in a positive manner instead of
library. In addition, Anthony volunteered at coming on strong and demanding
local non-profit agencies, including the things. Individuals like Barry Romich
Options Independent Living Center in East want to help … but don’t have time to
Grand Forks. Anthony’s success in the DO- listen to rude requests and are likely
IT Scholars Program (DO-IT, 2005) also not to respond to them either. I must
provided opportunities that contributed to his have written a very positive letter
self-confidence and broadened his range of because I’m now employed at the
experiences. For example, at the 1995 Closing Prentke Romich Company.
the Gap Conference on technology for people
with disabilities, he was a co-presenter with Researchers have reported that many
the director of DO-IT, teaching an audience individuals who have significant disabilities
of special education teachers how they could fail to set high goals for themselves and/or to
use the Internet to conduct research for plan for employment; pessimism about job
themselves, as well as to enhance the prospects may limit their career aspirations
academic programs of their students. (Odom & Upthegrove, 1997). In contrast,
Anthony developed career goals and
Goals and Aspirations aspirations early on.
By this time Anthony was an exceptionally As seventh grade rolled around…. this
skilled augmentative communicator and had was when I began seriously
many ideas about how the technology could considering working at either the
be improved to better meet his needs and the Prentke Romich Company or
needs of other individuals who rely on AAC somewhere else where I could help
systems. Anthony decided to write to the people communicate. Throughout my
President of the PRC with some of his middle school and high school years, I
suggestions and to express his desire to work remember continuously talking about
in the AAC field. this goal and boring people with
talking about what I wanted to do in
When I was in the DO-IT Scholars the future.
Program, I had a long list of things I
felt needed to be improved and/or However, I did have a teacher who
incorporated into AAC technologies. I loved saying, “Anthony, stop
ended up sending my ideas to Barry dreaming, you will never work at the
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Fall 2006, Vol. 3, Num. 1
Prentke Romich Company.” And … that I have made this a major part of
this year I celebrated my fifth my adulthood to serve others with
anniversary there, so I’m proud to say, communication disabilities.
“I taught the teacher something.” I
did meet up with her once at a Home and Pre-School Experiences
conference where I was representing
the company, and I received the best Anthony was born in a rural area of North
apology I have ever experienced. She Dakota. Between his first and second
thanked me for teaching her what’s birthdays his parents drove hundreds of miles
actually possible for people with each week to take him to therapy
disabilities. appointments. Soon after his second birthday,
his family decided to relocate to Grand Forks
Anthony reported that his family played a where more resources were available for
significant role in encouraging his Anthony’s education and rehabilitation. In
communication, determination, and career Grand Forks, Anthony began attending an
goals. inclusive preschool program at the University
of the North Dakota.
Communication Development
I have to remind you this was 1979, so
By the time Anthony wrote to Barry Romich IDEA [Education for all Handicapped
at PRC, he had been using AAC systems for Children Act of 1975, reauthorized as
over a decade; however, when he was a young the Individuals with Disabilities
child there were few AAC resources available. Education Act of 1990] and inclusion
Nonetheless, even before he received his first were fairly new concepts. This
communication board, Anthony was a preschool was almost like their test
creative communicator. drive of the new system, and they
were integrating special education
Once I was sitting home with my students and regular-ed students all
parents, and I noticed that the first within one preschool class
snow fall of the season was environment. It was nicely put
happening. Just like any other kid, I together, and I feel that everybody
was excited and wanted to tell my involved had a positive experience.
parents, but I had no means of saying,
“Look, look, it’s snowing outside!” So It was soon after Anthony’s communication
I decided if I could point to the about the early winter snowfall that he
refrigerator and then to the outside received his first communication board.
window, I just might get that point
across. As you can imagine, I drove My parents and therapists began
my parents crazy with trying to figure noticing that I had the ability to
out what I wanted to say until they communicate just a single point like “I
looked outside themselves and saw want to eat” or “I need help,” so they
that it was snowing. You can imagine decided to work together and develop
how proud they were to realize that I some means of communication. We
knew how to communicate. Now, ended up using six pictures taped on a
looking back on it, you might say clipboard, which was a great beginning
communication has always been a step headed in the right direction,
priority for me. So it isn’t surprising which is something I recommend for
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Fall 2006, Vol. 3, Num. 1
other children today. You don’t want stopped wanting to communicate with
something that overwhelms them at me, they would probably have
first, and you can always expand with jeopardized my determination to
time. communicate.
After the preschool at the University of North Elementary and High School Experiences
Dakota, Anthony was enrolled in a public
school program where he had access to In elementary school Anthony was included
school district resources and support in general education classes, but spent time in
personnel. Anthony qualified for special the special education resource room as well.
education services as a result of the Like many individuals who use AAC,
educational challenges presented by his Anthony struggled with literacy.
physical and communication impairments.
I usually say that I had the best of
After I left preschool at the University both worlds instead of just one. I
of North Dakota, I was enrolled in the know that people tend to like and
Grand Forks Public Schools for insist on having children included,
another preschool program, where I which is great, but, besides my
had access to a teacher, a physical disability, I have some
paraprofessional, a speech-language learning disabilities as well. So by
pathologist and an occupational going to the resource room I was able
therapist, who were a great addition to to focus on some of the harder
my parents and my other subjects for me, like reading and
rehabilitation team. They all worked spelling.
nicely together. It was then that we
developed a communication board Fortunately, Anthony encountered teachers
with more symbols, and we added the who recognized his potential and were
alphabet and numbers to it…. persistent in their support of his literacy
Another thing my parents felt strongly development.
about was to try to make my
communication boards as user My resource room teacher was very
friendly as possible, because they determined in teaching me how to
wanted others to communicate with read – come hell or high water!
me as well.... By the time I left Writing and reading are the most
preschool, I was putting together 10- important things you can teach a
12 word sentences, including every student with disabilities, especially
part of speech. Being a when you’re hoping for other future
communication board user, I required successes. Sure, it’s hard work at
somebody to always read what I times, but in the end it’s probably the
wanted to say, and I used to frustrate most rewarding.
people trying to read and remember
what I was saying because my finger During this time I was using a
would move so quickly. Sure, I communication board with over 150
frustrated people by pointing so symbols…. We began to realize it
quickly, but they never stopped would be nearly impossible to add
communicating with me just because more symbols on to my
of frustration. If they would have communication board and still
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Fall 2006, Vol. 3, Num. 1
maintain my independent use of it, so districts weren’t chipping in, so it fell
we had to start looking at other back upon my parents to pay, which
alternatives that would provide what they did and I’m sure they would
we wanted. This again called for again if called upon.
everybody’s input, including the
physical therapist’s and the I received my TouchTalker™ in
occupational therapist’s. December of my second grade year,
and I recall that was like the happiest
High-Tech AAC Systems day of my childhood by being given a
voice I could independently use
In October of 1985 one of Anthony’s speech- without needing somebody to read my
language pathologists attended the Closing the communication board.
Gap Conference in Minneapolis. It was there
that she saw a voice output communication When I received my TouchTalker™
device for the first time. in 2nd grade, I was one of the first in
North Dakota ... to actually receive a
She saw a TouchTalker™ by the communication device of any kind.
Prentke Romich Company that had There was basically nothing to go by,
the ability of storing vocabulary words so it was like “the blind leading the
under sequences, and it also had a blind.”
computer-generated voice. The
moment she saw this, she said to Back then, there were no
herself, “I have the perfect candidate preprogrammed vocabulary packages
for this!” So she gathered the like there are today. We had to
information and brought it back to program our own, which again called
present to my teachers, other for input from everybody on my team
therapists, my parents, and me. We all to figure out what needed to be
thought that this was something we programmed. My two speech-language
should really consider, so we decided pathologists worked well together….
to drive down to Sioux Falls, South It’s always good to form working
Dakota. I think that everybody who relationships with everybody because
went down there would do it again, sometimes they might have ideas that
because we were very pleased with you haven’t thought about.
what we saw. We decided to arrange a
trial period with PRC. Something that It took a couple of years before my
I like about the majority of the vocabulary was totally built up in my
companies today is that they allow TouchTalker™. During this time, my
trial periods before purchase. I believe parents expected me to take and use
that we were allowed to keep the my TouchTalker™ everywhere I
device for 6 weeks. The trial use of the happened to go and need a voice. My
equipment was a great success, so we parents began to notice a big
ended up deciding to purchase. improvement in communicating with
Purchasing a communication device me. One time we were driving
back in 1985 was almost like investing somewhere and realized it was the
in the stock market, you didn’t know very first trip when my mom didn’t
what you would get in return. Back need to get up to read my
then insurance companies and school communication board. Everybody was
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Fall 2006, Vol. 3, Num. 1
happy I could hold a conversation probably begin working much harder
with them while they were driving. to help them get more accomplished
During this time, I formed more than they did before. To me, that’s the
friendships at school because I had a biggest reward.
way to communicate with other kids.
We often talked on the phone and Independent Living
made plans, which was something my
parents encouraged. In addition to his communication device, the
AT that has most impacted Anthony’s
Anthony continued to use his TouchTalker™ independence and quality of life is his power
for several years. The TouchTalker™ was wheelchair, an Invacare® Ranger. He reports
followed by a Liberator™, which that he received his first power chair at the
incorporated additional features including a same time as his first voice output AAC
notebook, calculator, and print capability as system.
well as some computer access and
environmental control. Anthony continued to I was introduced to my first power
use his Liberator™ until he was hired by chair (that was the 3-wheel scooter
PRC. type) the very same month as my
TouchTalker™ … which is something
I was hired by PRC right at the time my parents and therapists would have
of the introduction of the probably done differently, like
Pathfinder™, and they had some bugs separating the two a few months
to still figure out, so I was offered one apart, because I was too overwhelmed
to help work the problems out. in excitement instead of focusing on
the learning and the new responsibility
Professional Communication of both. I must say that both my
power chair and my communication
Anthony now uses a Pathfinder Plus™ for device are the center core to my
communication. He worked on product independence, but I feel that the
testing for the Pathfinder Plus™ at PRC education and rehabilitation that went
before its release to the public. along with the communication device
and power chair were a greater
I must say these past five years element than these two material items.
working for the Prentke Romich Communication devices and power
Company have been some of the most chairs are like lumber, and when
powerful and best years of my life…. lumber is delivered, it doesn't mean
Since I started remote your house instantly gets built. The
troubleshooting, I feel that we have lumber is just the material you need to
gotten some great and positive build with.
feedback from customers that we have
helped, especially parents of young Self-Advocacy
children beginning to use a
communication device and other As part of the DO-IT Summer Study program
assistive technology. I know that when Anthony met other highly motivated
they hang up after talking and being teenagers with disabilities and lived on the
helped by me, they have a better University of Washington campus for one or
outlook on their child’s future, and two weeks, for two consecutive summers. His
Assistive Technology Outcomes and Benefits / 74
Fall 2006, Vol. 3, Num. 1
DO-IT Summer Study experiences coupled introduced him to online research and
with his attendance at Camp Courage helped communications tools. As part of the DO-IT
him develop skills for living away from his Scholars Program, Anthony participated in
family, working with personal care attendants, online discussions with other DO-IT Scholars
and advocating for himself. and Mentors while he was still in high school.
Today he is a Mentor to younger DO-IT
At Camp Courage they have a well- Scholars and continues to participate in online
trained staff to provide personal care discussions.
attendant service, which is good for
both parent and camper to realize that Technology, support from others, and his
separation is possible and needed. My own determination have enabled Anthony to
first year of attending camp, I was lead an independent life.
very home sick... The first summer I
remember only receiving one shower I use my Pathfinder™ for my
the entire week, and I'm somebody communication needs, my power
who prefers a shower every morning. chair for my mobility needs, a
Then my second year there I computer to help me with writing and
requested my normal shower routine. stuff for work, a speakerphone to help
They had no problem with doing that me speak over the phone using my
and I was a much happier camper Pathfinder™, and an Infrared
with my daily showers. I think they Receiver plugged into my computer to
wanted me to learn how to advocate receive data from my Pathfinder™ so
for myself instead of just following I can use my programmed vocabulary
their lead. When I attended DO-IT, I and word prediction to generate
was much better at communicating writings like this e-mail.
my needs/wants to attendants.
When I was at Prentke Romich in
In the DO-IT Summer Study Program June I got my cell phone integrated
Anthony lived in a dormitory on the into my Pathfinder™, which lets me
University of Washington campus and had his place and receive calls directly from
first experience supervising an attendant and my unit and has increased my level of
managing his personal care needs on his own. independence and security
That experience provided him with practice dramatically.
that proved valuable when he later moved out
of his parents’ home into his own apartment. I'm very independent (surprisingly),
Through DO-IT, Anthony also made friends with a personal care attendant coming
with other teenagers with disabilities who had in an hour in the morning, and then
goals for careers and independence similar to she comes back at noon and feeds me
his own. He continued to develop self- lunch. At suppertime, I usually go
advocacy skills as he communicated with over to my parent's house and eat with
peers and mentors via the Internet, year them, or sometimes they bring supper
round. over to my house, especially on
evenings I work because I'm too busy
Developing Leadership and Technology Skills with technical calls. Other than that,
I'm pretty much by myself, something
Anthony’s experiences with DO-IT I like because I get to focus on my
strengthened his technology skills and interests.
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Anthony has his own website (Arnold, n.d.) independent living. The external factors
and spends time keeping it updated. He include (a) advances in technology and
enjoys learning about technology, and surfing opportunities to have access to that
and chatting on the Internet. He is also a technology, (b) a family that supported his
hockey fan and attends games at the Ralph goals for independent living and a career, (c) a
Engelstad Arena in Grand Forks. He has a strong professional support network, (d)
modified bicycle that he enjoys taking on long opportunities to practice independence away
rides. He also serves on the board of directors from home, and (e) opportunities to interact
of the Options Independent Living Center in with peers who had goals and aspirations
East Grand Forks, where he volunteered after similar to his own. Internal characteristics
he left college. Anthony continues to take on include Anthony's persistence, positive
new challenges and set new goals for himself. attitude, self-determination, and hard work.
Inherent traits and external supports
The success that I have had helping converged to produce successful outcomes
customers has really encouraged me to with respect to employment and independent
try different things.... I decided to join living.
a gym for weight lifting, which
surprised everybody. I now can lift 10 My desire to communicate ... I would
pounds and use a machine called say, came internally. But keep in mind
NuStep® without problems. I can that no communication device was
balance myself for transfers, so introduced to me until age 8, so I
nobody has to help me move always had to depend on somebody to
anymore. read my communication board, and,
frankly, if nobody had shown interest
I’m also thinking about trying college in reading my board, my desire to
again now that I know I can do communicate would have disappeared.
something if I truly work at it. If I do I have seen cases where this has
that, I would love to become a happened, where the device only gets
rehabilitation engineer…. I feel that used at school and therapy, but when
could open up more doors for people it gets home it's placed on the shelf
in the long run. My point here is if we and isn't used there or in any other
can give an individual a job or environment. Due to this the children
something they love to do, not only suffer in both their education and
that area of their life improves, but independence, and their ability to
other areas improve as well. carry on a conversation isn't fully
developed.
It is an amazing feeling knowing what
I have accomplished thanks to the While growing up, Anthony had the good
right education, right rehabilitation, fortune to meet with educators and
right staff and most importantly the professionals who were supportive
right parents. collaborators; but even when he encountered
individuals who were not supportive--as in the
Discussion case of the teacher who discouraged his career
ambitions--he reacted with neither anger nor
Many factors – both internal and external – discouragement. Anthony reported that his
came together to support Anthony's teacher’s negative comments served to
successful transition to employment and strengthen his determination to prove her
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