3 May 2018 — SpeakUp Editor
May is Better Hearing & Speech Month and USSAAC is celebrating in the spirit of the “Communication for All” theme. SpeakUP will be sharing informative guest posts about AAC all month long. Today we are pleased to welcome Kathleen Post from Midwestern University to share Part One of her blog post about the pitfalls that individuals who use AAC may encounter when transitioning from an older communication device to a newer one. Find Part Two by clicking here!
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Over the course of the many years of my career, I have watched advancements to AAC systems and expansion of our intervention evidence base. Hardware has changed and continues to evolve, vocabulary sets have grown and continue to expand: finding ways to incorporate core, ‘fringe’, social language and personal vocabularies into the hardware to make communication ever more efficient, easy to understand and retrieve for any type of communication function. These advances come with a cost for many of the people who have now grown up in the age of the portable ‘speech generating device’ (SGD). This cost involves the money, time, energy, relearning, and sometimes extreme frustration, in transitioning from one system to another when original technology fails, becomes obsolete, or can no longer grow to support the individual’s needs.
Let’s consider this story about John (not his real name). John had limited-to-no-speech for much of his early life, diagnosed with cerebral palsy and dysarthria, and was given a portable SGD to assist his communication. It had a customized and robust vocabulary set for his access and personal communication needs. He learned to use it well and for much of his early school years, it supported his efforts in communication. After a number of years, the system started to fail and eventually the manufacturer reported that the system could no longer be repaired, but a replacement system was now available. The challenge was that the replacement system could not support a transfer of the vocabulary set from John’s original system. Instead, the school team, clinicians, and family spent numerous hours trying to ‘re-create’ the familiar messages and vocabulary items from the original system into the new system. Some words and messages were just not added, time and attention being given to new language possibilities. The result being that the new system, while having the latest options in technology available, required John to spend more time and energy trying to learn how to use the new vocabulary layout and arrangements/encoding. This ‘new’ learning continuing to occur at the same time as new academic learning was happening each day in school. This cycle continued throughout John’s life, with repeated replacements of his speech generating devices as technology changed. Any automaticity in selecting and speaking messages was compromised each time the system changed due to different sizes of screens, layouts of vocabulary, icons/symbols used, sensitivity of touch or ability to position the device securely. Compounding these change issues were transitions in staff and personnel working with John to help him continue to communicate using these new systems. New staff did not always have an understanding of John’s history or patterns of usage in his previous SGDs and often presented the ‘new’ system as a means of gaining greater efficiency. John’s efficiency in usage continued to ‘roller coaster’ as each new piece of technology was obtained for him.
I’d like to think this story is unusual, but I fear that it is not, particularly for those individuals with no or emerging literacy skills who have very customized vocabulary systems started many years ago before the advent of more established commercially available vocabulary sets. Over the years, I have re-evaluated numerous individuals that needed replacement SGDs and I have found myself ‘wading into murky waters’ with how to help those individuals move to a new system, trying to find something that could support a transfer of a comfortable and established vocabulary set or access method, but with less and less success due to hardware, operating system and access changes.
Not too long ago, my friend, Chris Klein, and I teamed together to informally survey a small group of persons who used augmentative and alternative communication (PWUAAC) regarding this growing problem (ATIA, 2017). Chris is the founder of BeCOME:AAC, a non-profit mentoring project, and has had many additional awards and accomplishments, in addition to understanding firsthand how this transitioning between SGDs can become complicated, as he has used a variety of these systems over his lifetime. Look for our survey results in Part Two of this blog post later this month.
References and Resources:
Bryen, D., Chung, Y., & Lever, S. (2010). What you might not find in a typical transition plan! Some important lessons from adults who rely on augmentative and alternative communication. Perspectives on Augmentative & Alternative Communication, 19(2), 32-40. doi:10.1044/aac19.2.32
Hamm, B., & Mirenda, P. (2006). Post-school quality of life for individuals with developmental disabilities who use AAC. AAC: Augmentative & Alternative Communication, 22(2), 134-147.
Kennedy, P. (2010). Navigating through transition with individuals with speech disabilities. Perspectives on Augmentative & Alternative Communication, 19(2), 44-50. doi:10.1044/aac19.2.44
Light, J., & Drager, K. (2007). AAC technologies for young children with complex communication needs: State of the science and future research directions. Augmentative and alternative communication, 23(3), 204-216.
Loncke, F. (2013). Augmentative and Alternative Communication: Models and Applications for Educators, Speech-language Pathologists, Psychologists, Caregivers, and Users. Plural Publishing, Inc.
McNaughton, D. B., & Beukelman, D. R. Eds. (2010). Transition Strategies for Adolescents and Young Adults Who Use AAC. AAC Series. Brookes Publishing Company.
Post, K. & Klein, C. (2017). Wading into the Murky Waters of Transitioning Between AAC Systems. Presented at the Assistive Technology Industry Association (ATIA) Conference 2017, Orlando, FL.
Rackensperger, T., Krezman, C., Mcnaughton, D., Williams, M. B., & D’silva, K. (2005). “When I first got it, I wanted to throw it off a cliff”: The challenges and benefits of learning AAC technologies as described by adults who use AAC. Augmentative and Alternative Communication, 21(3), 165-186.
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Kathleen A. Post, M.S., CCC-SLP is an Assistant Professor and Clinic Coordinator at MWU’s Speech-Language Institute. She teaches a course in Augmentative and Alternative Communication and supervises SLP graduate student clinicians at the Speech-Language Institute. Previously, Mrs. Post was the Director of Assistive Technology, Speech/Language and Nutrition Departments at a large pediatric outpatient rehabilitation center in Illinois. For over 30 years, Mrs. Post has served individuals and their families who struggle with communication disorders. Her areas of interest continue to include pediatric speech-language disorders, early intervention services, augmentative and alternative communication, and assistive technology for persons of all ages and disabilities.
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Jill E Senner, PhD, CCC-SLP
Editor-in-Chief