by Kathy Smith, MSPA, CCC-SLP/L (Speech-Language Pathologist, retired); NWACS Vice President
Before retiring, I was an SLP for about 40 years focusing mainly on AAC services. As I reflect on my experiences, I believe an important impact I made was during the evaluation process. Evaluating a client with multiple severe disabilities for an AAC system is a huge challenge. I want to share three of my evaluation experiences that were particularly impressive to me. For privacy, I have generalized descriptions and details about each person, except for the actions I took.
The first was a person who sustained a head injury many years prior to my evaluation. After the injury, she was unable to do anything physically: unable move any part of her body except to flail one arm, unable to sit up, and unable to speak. She had had several communication evaluations over the years. The consensus of the previous evaluations was that she was unable to learn any communication system. Thus, her only communication system was a vocalization. Of course, I tried several AAC options. Nothing seemed to work as previous evaluators had noted. What to do? I had a chance to observe her way of drinking liquids - a very unique way I had never seen before. How did that system get started? I was told the client figured it out. That gave me the clue that there was capability inside that body! I just had to figure out how to access it. Based on my recommendation, her hearing and vision were evaluated. She was found to be severely cortically blind, seeing only light and dark. All those years no one realized she was cortically blind due to the injury. Our team went to work. She received an electronic auditory scanning device which scanned letters of the alphabet row by row. Although it was a very slow communication process, she composed many messages using the printer feature efficiently. She could compose messages using a custom wrist/arm switch with a fair amount of accuracy. Best of all, her spelling was reliable. Now she did not want to stop ‘talking’, printing messages all day long making up for all those years of not being able to communicate!
Another unusual experience was evaluating a teenager with severe physical disabilities who required 24-hour care and had received many years of communication services at her school. However, the therapists and family were frustrated with the lack of progress. The family wanted their child to indicate ‘yes’ or ‘no’ to help them care for her, as she had no other reliable communication system. But despite several years training before I evaluated her, accuracy was not reliable. On closer examination, I discovered skills in other arenas that did not match the poor communication level we observed. Again, I recommended her vision and hearing be evaluated. A thorough audiological evaluation revealed a severe hearing loss to the degree that she was unable to understand spoken language (or answer yes/no questions reliably!). All those years and no one knew! Our team went to work developing a simple visual communication system for her, which she used reliably, as well as teaching her staff and family how to communicate with her visually.
The third unusual experience I would like to share about: evaluating a person who had adequate physical skills to do all daily activities, but no reliable verbal, picture or sign language output after many years of therapy in school. She had a picture communication system and knowledge of some sign language but she rarely used either system. Her parents and caregivers always verbally communicated to her, not using either of the visual systems. Why didn’t she use her systems? Something was missing, but what? In a thorough chart review going back to infancy, I found a doctor’s note suggesting she might develop an auditory comprehension deficit as a result of a childhood illness. Again, I recommended a thorough audiological evaluation. The results indicated she had such a severe auditory processing deficit that she was unable to understand any verbal communication, even yes or no. Through the years she had developed such good observation skills that the deficit was hidden. Again, our team went to work. This time we trained the caregivers how to use a variety of visual communication systems at all times when they communicated with her. She was on her way - understanding others and increasing her use of her visual communication systems!
Standardized communication tests and formal assessment measures are absolutely necessary but observation of behaviors, or lack of behaviors, can be just as important. And always I asked myself - not only during an evaluation, but also during each encounter - is there something I am missing?
I suspect you have had unexpected experiences which required more than standardized tests, but provided important insights. What are some of your ways to gain additional information other than using standardized communication tests? Please share your interesting experiences on our NWACS blog. We can all learn from each other!!