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by Tracy Rackensperger

I was born with cerebral palsy, which significantly impairs my motor skills and my speech intelligibility. I use an electric wheelchair and an augmentative communication device. I have always used direct selection to access all of my devices.

I just graduated from the University of Central Florida, where I received a bachelor's in radio-television. I plan on going to graduate school in the spring to study communication. My career goal is to become a motivational speaker and deal with issues concerning communication and disability.

My family has always been supportive of augmentative communication, and so was the school system. I have been mainstreamed since I was in the fourth grade and have had a way of communicating throughout my schooling.

I was one of the few people introduced to augmentative communication at a very young age. When I was about three years old, my speech-language pathologist (SLP) taught me Blissymbols, visual-graphic symbols that represent words. The Blissymbols were laid out on a board in categories such as verbs, prepositions, adjectives, and nouns. The board was made of cardboard and cloth and had a plastic covering. Symbols were pasted on the cardboard and had the equivalent English words above the symbol. I pointed to the symbols, which was time consuming. This system served two purposes. First, it allowed me to communicate with people who could not understand my speech very well. Second, because the board was organized by word class, it aided my learning of English.

The board quickly became cumbersome, and proved too limited for my communication needs by the time I was about five or six years old. I had an expanding vocabulary, and the communication board was not designed to handle large numbers of symbols. To this day, my dad insists I was reading the words under the new symbols because I was learning symbols very fast-faster than anyone my SLP had worked with before.

Shortly before my board went into retirement when I was about six years old, I had a communication assessment. The county where I attended school had their own assessment center. The center had the latest augmentative communication and assistive technology devices. A group of physical, occupational, and SLPs assessed my augmentative communication needs.

We settled on a device called a TouchTalker made by the Prentke Romich Company. It had Echo Speech. Remember Echo Speech? It was the first voice synthesizer augmentative communication devices had, and it was not very clear. The TouchTalker came with Minspeak. Minspeak allowed me to preprogram messages under icon sequences. At this time, there was no such software program as Word Strategy or Unity. These software programs were not invented yet.

I worked with SLPs to develop skills to use my augmentative communication device. They taught me how to use icon sequences and about icon representation. However, I worked with them on improving my verbal skills as well. I have seen the speech-language pathology field change to put a lot more emphasis on augmentative communication-but little or none on improving a person's own verbal capabilities. This is not good because it makes a person totally dependent on technology and in some communication situations, augmentative communication is not needed because the person's communicative partner understands the individual's speech. What if the device breaks down? I had no problems with my TouchTalker. However, it definitely helped that I had my own natural speech because sometimes I had to take my device off my wheelchair in order to do things like use a computer and participate in sports. In those situations, I had to use my natural speech to communicate with people.

I have to admit that until very recently, my devices were almost always in spell or word prediction mode. When I had my TouchTalker, I did not realize the power of Minspeak. I liked the flexibility of spelling out messages. I would put in Minspeak things like: "My name is Tracy Rackensperger," "How are you?", "I am having a good day," "What's up?", etc. Yet I spelled out a lot of words.

I loved my TouchTalker. It really worked for me. In fact, I used the TouchTalker for a little less than 10 years. The main reason my family and I decided a new device was needed was because DecTalk, which is more intelligible speech software, was easier to understand and I was ready for a change.

In high school I was reevaluated, and it was decided that I really needed a new device. Since I was so used to spelling out words, they recommended a totally new device, a DynaVox. This device had word prediction and had computer-like functions, which I liked very much. For example, messages were categorized in folders. I had a personal folder with such things as my name, address, and phone number. Still, I used word prediction a lot. Word prediction is faster than spelling but not as fast as preprogrammed messages. Unfortunately, this device did not work for me. I used the DynaVox for about five years, though, before I found funding for something else.

Now I am back to a Minspeak-based device. Vocational rehabilitation is paying for a Pathfinder. So far, I like it! I am trying to use Unity and break my old habit of spelling all words out. Unity is a good software program. I like the flexibility of the program.

Throughout my school years and now beyond, I use augmentative communication to communicate with people who have difficulty understanding my own natural speech. People who have known me for a while can understand my natural speech almost all the time. Strangers usually have no clue what I am saying unless I use augmentative communication. I have used these devices to interact with teachers, classmates, employers, coworkers, strangers and friends. I am using augmentative communication more and more to give presentations, spread ideas, and help others who have developmental disabilities. I want to serve as a role model for others with significant disabilities and tell them how I achieved success.

I am now involved in the self-advocacy movement, which promotes individuals with disabilities to make their own decisions based on their preferences and to be self-determined. My augmentative communication device allows me to participate in conferences and meetings. So far, I have attended conferences in Rhode Island and Georgia, a leadership project in Washington, DC, and I have given presentations to the Florida Developmental Disabilities Council and at a conference in Fort Lauderdale, FL.

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by Tracy Rackensperger I was born with cerebral palsy, which significantly impairs my motor skills and my speech intelligibility. I use an electric wheelchair and an augmentative communication device. I have always used direct selection to access all of my devices. I just graduated from the University of Central Florida, where I received a bachelor's in radio-television.

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All individuals with severe disabilities have value. They have important ideas and experiences to share with others. Unfortunately, communication abilities and skills are often underestimated, resulting in a lack of interaction opportunities. We address several common myths about adult communicators with severe disabilities.
Myth #1: Working on communication is not worth the effort. If expressive and receptive communication skills have not developed by now, they are not going to develop.
Communication permeates every aspect and stage of life, influencing one's self-determination and life quality. A number of studies have shown that individuals with severe disabilities continue to develop communication and language skills well into their adult years and make measurable gains when provided with appropriate communication services and supports.
Myth #2: If communication, language, and literacy interventions did not work in childhood, they will not work now.
Perceptions of the individual as a child may be maintained in adulthood and thus limit the possibilities of the individual who is now an adult. Intervention approaches that were attempted in childhood may be more effectively implemented in adulthood. New approaches (including technologies and instructional strategies) and contexts (daily activities and communication partners) have developed/changed since the individual was a child.
Myth #3: Adults with severe disabilities only have simple thoughts, feelings, understandings, and needs, so they do not require comprehensive communication service and supports.
Adults with severe disabilities have the capacity to improve their communication with appropriate services and supports. Comprehensive communication services and supports need to be included in yearly service plans. Funding for communication services and supports for adults with intellectual and developmental disabilities may be available through your state's Medicaid program, including waivers under the Medicaid Home and Community Based Services program and services for people with intellectual and developmental disabilities under the optional Medicaid benefit program called the Intermediate Care Facilities for Individuals With Intellectual Disability. Your state's Disability Rights Network affiliate may provide additional information about sources for funding.
Myth #4: Spoken communication is the only REAL communication.
Communication does not need to be expressed through speech to be legitimate and valued. Today, everyone communicates in a variety of ways. Using augmentative and alternative communication will not limit speech and can actually enhance speech. The match between communication systems and supports and the individual will change over time. It is critical to support communication partners as contexts change.
Bottom Line:
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Websites

References/Works Consulted

Brady, N. C., Bruce, S., Goldman, A., Erickson, K., Mineo, B., Ogletree, B. T., Paul, D., Romski, M. A., Sevcik, R., Siegel, E., Schoonover, J., Snell, M., Sylvester, L., & Wilkinson, K. (2016). Communication services and supports for individuals with severe disabilities: Guidance for assessment and intervention. American Journal on Intellectual and Developmental Disabilities, 121(2), 121-138. Note: This article includes the NJC's revised Communication Bill of Rights. https://doi.org/10.1352/1944-7558-121.2.121

Chapman, R. S., Hesketh, L. J., & Kistler, D. J. (2002). Predicting longitudinal change in language production and comprehension in individuals with Down syndrome: Hierarchical linear modeling. Journal of Speech, Language, and Hearing Research, 45(5), 902-915. https://doi.org/10.1044/1092-4388(2002/073)

Cheslock, M., Barton-Hulsey, A., Romski, M. A., & Sevcik, R. A. (2008). Using a speech generating device to enhance communicative abilities and interactions for an adult with moderate intellectual disability: A case report. Intellectual and Developmental Disabilities, 46(5), 376-386. https://doi.org/10.1352/2008.46:376-386

Snell, M. E., Brady, N., McLean, L., Ogletree, B. T., Siegel, E., Sylvester, L., Mollica, B. M., Paul, D., Romski, M. A., & Sevcik, R. (2010). Twenty years of communication intervention research with individuals who have severe intellectual and developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 115(5), 364-380

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Myths About Adult Communicators With Severe Disabilities

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Several common myths about adult communicators with severe disabilities.