The services of BurbankWire are
FREE.
|
Traumatic Brain Injury: A Case for an Augmentative and Alternative Communication (AAC) System
By Jim Hetherman
Ragnarsson (2002) was chair of the National Institute of Health (NIH) Consensus Conference on Rehabilitation of Persons with Traumatic Brain Injury (TBI), organized due to the lobbying effort by persons with TBI and their families who felt that the disease was poorly recognized by health professionals and the Government. The conference defined TBI as "brain injury resulting from externally inflicted trauma." Among its conclusions, the conference found that a) TBI could vary so significantly from individual to individual that it often does not look like the same disease, b) rehabilitation should be matched to the needs and capacities of each individual, and c) the person with TBI should play an integral role in their own rehabilitation. Please keep the above conference results in mind as you read this article.
Background Information
George was 18 when he graduated from High School in June 2001. He had performed well in all his courses and graduated with better than a 3.75 GPA. George lived with his mother and father in the San Diego area. English was the primary language spoken in the home, although George had studied French for four years and often spoke French with his mother. George's father did not speak any language other than English.
In July of 2001, George went off-road motorcycling with his father. Although his father was an avid off-road motor sportsman, George was not. In fact, he had never been on a motorcycle before. His father wanted to introduce him to the three-wheeled motor sport, and, to please his father, George agreed to the off-road experience. After instruction in the mechanics and safety of operating the equipment, George followed his father's lead, except that George refused to wear his helmet. After about thirty minutes of riding with his father, George had an accident. He hit a large rock, lost control, and flew off his motorcycle. Instinctively, George stuck out his right arm to break his fall. His wrist snapped, and George hit his head on a rock. His resulting injuries were a physical impairment to his right arm, wrist and hand, and a traumatic brain injury.
After about six-months of physical therapy, George was able to walk unaided by a walker or other device. Soon after the accident, George underwent an operation on his wrist to install a titanium plate. After continuous occupational therapy, he is now able to bend his wrist 30 degrees up and 15 degrees down. George can write with a pencil that includes a grip, but writing is painful and after several minutes, he must rest.
The TBI caused George's speech to be impaired. At this point in his recovery, George is verbal and vocal, but his speech is not always intelligible to anyone who does not know him well. George almost never initiates vocal communication with anyone other than his mother or his aunt and uncle, but does attempt to respond. The TBI has not resulted in any continuing cognitive, vision or hearing impairments.
George has been receiving speech and language therapy, and occupational therapy for his wrist, since the accident. In April of 2004, George came to stay with his aunt and uncle in the LA area for an as yet undetermined length of time. It has been shown that teletherapy can be an effective and efficient means of providing rehabilitation services (Forducey et al., 2003), and George is continuing to work with his speech and language therapist and with his occupational therapist on a Telerehabilitation basis; his family is continuing to consult with the therapists on the same basis. This situation is intended to be temporary while George is visiting. If he relocates on a more permanent basis, he will obtain the services he needs locally.
Assessment of Current Communication Repertoire
This assessment was made based upon information obtained from George's speech and language therapist:
1. Oral motor evaluation. The muscles that control George's speech are not fully coordinated often resulting in his being inarticulate.
2. Grammar. At those times when he articulation is good, George uses correct syntax.
3. Vocabulary. At those times when his articulation is good, George uses an extensive vocabulary and chooses the correct word to respond to questions or explaining.
4. Reading and writing. George is performing at or beyond his age and education level.
5. Language sample. Using a word processor, George can retell a story, make changes to situations, and present information and events in a logical order.
6. Social communication. After reading selected stories, George is able to respond, using a word processor, explaining characters, their actions, jokes, sarcasm, absurdities, and identify inappropriate behaviors of the characters.
7. Cognitive communication. George is fully aware of his surroundings. Turns towards a voice, knows his name and the names of his family, therapists, and friends. He knows his age, when he graduated from high school, where he is at all times, and what happened to him.
8. Problem solving. When presented with a hypothetical problem situation, George proposes a logical solution and makes suggestions on how to avoid such problems in the future.
9. Responding. George verbally and vocally responds to all requests for information. Due to oral motor coordination difficulties, his responses are not always understood upon first attempt.
10. Initiating. George rarely initiates verbal vocal communication, except with his therapists, mother, aunt and uncle. He does initiate many written communications using email.
Assessment of Current Communication Needs and Opportunities
George identified six areas of daily community life, outside of his family, that he believed were most important to him today and that he would like to be able to participate in more fully. He thought that his needs with his immediate family were being met, and he was anxious to have a life outside his immediate family as well. George's communication needs and opportunities are described as follows:
1. Church. George wants to participate in church activities both now and when he returns home. He belongs to a church that has thousands of parishes, and except for individual cultural differences of members in different geographic communities, their belief systems and practices are virtually the same. Learning to participate and communicate here in the LA area could be easily generalized for application in elsewhere. Three sub-areas considered were:
a. Worship. George's opportunities for worshiping are basically the same as an individual without a communication disability. In fact, George rises early each morning, walks a half mile to his parish church, attends the service, silently participates in worshiping activities, and walks back to his aunt's and uncle's house. When asked why he liked attending daily services, George responded, "It makes me feel good about myself."
b. Social. George's church includes various clubs for members of different ages and interests. Because George does not yet initiate communication, his participation is awkward and difficult. He attended one meeting, but was not interested in returning yet. He said, "I want to be like everyone else." George needs a communication partner, with knowledge and skill about his special needs, who can attend meetings with him, break the ice and help involve other church group members so that George will not feel rejected or left out.
c. Service. George wants to participate in church activities that involve hands-on work, and that could lead to his being more accepted regardless of his current disability. George said, "I could usher and pass the baskets." The head usher was happy to have George's help, and helping with the Sunday collections is now part of George's routine. When George helps latecomers find seats after services have begun, he uses hand gestures just like the other ushers.
2. Banking. George and his uncle went to his uncle's local credit union to open an account. This particular financial institution was not equipped to handle opening an account for someone with limited vocal communication skills unless the customer was accompanied by another customer who could explain the situation. Because George was new to the area, this might have been a challenge even for a gifted oral communicator. However, once the explanations and introductions were done, George was able to respond to the account officer's questions and prompting, and left the bank with a new account, some temporary checks, and the knowledge that permanent checks and an ATM card would be on the way. The ability to handle one's own day-to-day and routine financial transactions is important in our society, and George knew that. In what was then a rare moment of confidence and trust, George initiated a remark to his uncle as they left the building, "Now I am somebody!" George needs a facilitator to assist in special banking transactions.
3. Shopping. The ability to shop for needed items closely follows the ability to take care of the most common banking transactions without assistance as a prerequisite to achieving a sense of competence for those with a communication disability. There is a difference between communication needs when shopping for common items and specialty items.
a. Common items. George demonstrated that he could easily go into a grocery store, place desired items in his cart, stand in the "15 items or less" check-out line, enter his uncle's phone number to get the club discount, hand over his "twenty," take his change, and respond "Plastic" to the clerk's request for his packaging preference, and finally respond "No thanks" to the clerk's automatic "Do you need help carrying this to your car?" question. An AAC system may be helpful as a backup just in case George becomes distracted and has trouble responding.
b. Specialty items. Other types of shopping were more problematic and required verbal assistance from a trusted communication partner. George needed a cable to connect his new digital video camera to his uncle's Mac. George thought that he and his uncle could go into the big electronics store, find the cable on the rack, and purchase it just as he did razor blades at the grocery store. Unfortunately, there were many different cables with different specifications.
In order to purchase the correct cable, one needed to know the exact type of connector on each end (one to match the camera, the other to match the computer). They consulted the sales associate, and he told them what information they need and where to look for it. Even if they had known that information in advance, they still wouldn't have been able to make the correct selection without assistance from the sales associate. They returned home, looked up in the documentation and wrote down the exact information regarding the type of connectors on the camera and on the computer, and then returned to the store. They again consulted the sales associate, and he looked-up in his specification book to find the correct cable. It is unlikely that an AAC system by itself would have helped George navigate this complex shopping task. The assistance of a communication partner is a prerequisite for success in this department.
4. Library. George has become an avid reader and researcher. Getting a library card was very important to him. At the time he first visited the library, there was no one at the library that had the time and patience to communicate with an adult who was not a natural speaker. The library clerk was the one who needed assistance in communicating with a customer with speech impairment. After intervention, the clerk managed to set George up in the system and issue a card. Most library transactions, once one has a library card, do not require extensive oral communication. Making special requests could require verbal-vocal communication, and an AAC system might help if those requests could be sufficiently defined in advance.
5. Restaurant. George's needs at this time for restaurant communications are simple but also important to him. He wants to be able to walk to a fast food outlet, order and receive what he wants, without assistance. Furthermore, it is important that the restaurant clerks not misunderstand his needs, and that he communicates his needs effectively and efficiently. The fast food environment is ideal for use of a simple AAC system such as a pocket communication book, if properly designed.
6. Transportation. Although there are plenty of opportunities to participate in a variety of community and commercial activities within walking distance from his temporary home, George desires to be able to use public transportation to travel to neighboring communities. We are fortunate in the LA area to have fairly well developed public transportation system that is effective for many who have some money and a lot of time. An LA County Regional Pass is available that enables the holder to ride almost any bus or train in LA County all month. Using public transportation will provide George with new and varied communication opportunities. However, there are dangers. Trip planning and knowledge will be essential for him, even for short trips. It will also be helpful for George and his family to be able to communicate with a cellular device with messaging capabilities before George ventures too far from home. George should take many trips with a communication partner so George can assess what he might need for AAC.
Estimate of Cognition Level
According to the specialists who evaluated him (see Assessment of Current Communication Repertoire above), George's current cognition level is good. George has not had any educational experience in a typical classroom environment since graduating from High School in June of 2001. In order to supplement the therapist reports, and to acquire first hand knowledge about George's cognition, a Reading Comprehension and a Math assessment were administered, and a writing sample was obtained.
1. Reading Comprehension. The High School Exit Reading Comprehension Assessment available from the Texas Education Agency (Texas Education Agency, 2002, Exit Assessment, Reading) was utilized. Similar assessments are available for earlier grade levels that make it possible to measure a student's progress across years in a given subject. George used a printout of the assessment; he read the material and responded by marking his answers on the printout. His uncle entered George's answers online and scored the assessment. The assessment measured George's performance on several objectives using a variety of written texts: Determining the meaning of words; identifying supporting ideas; summarizing; perceiving relationships and recognizing outcomes; analyzing information, making inferences and generalizations; recognizing points of view, propaganda, and statements of face or opinion. George achieved a raw score of 44 correct responses out of 48. The assessment computes a Learning Index that weights each question by difficulty. The passing standard for the Learning Index is 70. George's performance resulted in an achieved Learning Index in Reading Comprehension of 93. George's performance in Reading Comprehension indicates that he performed significantly above the minimum passing score for students with his achieved grade level.
2. Mathematics. The High School Exit Mathematics Assessment also available from the Texas Education Agency (Texas Education Agency, 2002, Exit Assessment, Mathematics) was utilized. George used a printout of the assessment; he read the material and responded by marking his answers on the printout. His uncle then entered his answers online and scored the assessment. The assessment measured George's performance on several objectives including: Number concepts; mathematical relations, functions, and algebraic concepts; geometric properties and relationships; measurement; probability and statistics; mathematical operations in problem solving; estimations; solution strategies. George achieved a raw score of 43 correct responses out of 60. The assessment computes a Learning Index that weights each question by difficulty. The passing standard for the Learning Index is 70. George's performance resulted in an achieved Learning Index in Mathematics of 83. George's performance in Mathematics indicates that he performed above the minimum passing score for students with his achieved grade level.
3. Written Composition. In order to assess George's writing abilities, he was asked to prepare a short paper on a concert that he was going to attend with his uncle. George demonstrated that he could take notes, identify what he saw, relate it to his expectations, make his own value judgments, and express all of that in a written piece that was interesting to read.
Since his accident and while he has been receiving therapy, especially during the last year, George has spent a considerable amount of his time reading, researching topics of interest, and emailing friends, family, organizations, newspapers, politicians and others. This practice in reading and writing may help account for his very high performance on the Reading and Writing assessments, together with the fact that the ability to read and spell are skills often retained by people with TBI (Beukelman & Mirenda, 1998, p. 514). His somewhat lower, but still high performance in Math may reflect a lack of practice rather than any acquired cognitive deficiencies for mathematical processing. These three assessments seem to confirm the conclusions of the specialists that evaluated him: George's cognition is high for his age and attained educational level.
Movement Patterns
George was observed to have normal physical movement patterns in all significant respects. The orthopedic problem with his right wrist affects his ability to perform ten-finger typing, and results in pain and rest requirements when writing or performing two fingered typing. This orthopedic impairment will not have any substantial affect on his ability to make direct selections using a low-tech communication book or aid. George's weight, conditioning and posture was also observed to be good; keeping a healthful weight, muscle tone and posture will not only allow George help avoid other physical problems that could arise during his rehabilitation, but will also allow George to be a role model himself and add to his overall sense of competence.
Symbol System
Since his accident, George had learned to be overly dependent on his protective mother for his communication needs. In fact, his mother said that his speech therapist indicated the same thing to her, and she agreed with him. George also agreed that such was the case. The family members agreed that there was a need for change; hence George came to live with his aunt and uncle for undetermined length of time. The AAC symbol system should help George initiate communications, especially in those situations where he is without a communication partner, and help him satisfy his communication needs in those daily activities that are important to him today. Due to his apparent high motivation, his lack of serious physical impairments, and his high level of cognition, everyone expects that George will make rapid progress at becoming a natural speaker once more. George would be capable of learning an advanced symbol system that could grow in complexity as his needs changed. However, that wouldn't benefit him because his needs for reliance on an AAC symbol system are expected to decrease fairly quickly. George carries with him a piece of 8½ x 11 paper, French folded in his back pocket, and a gripped ballpoint pen in his shirt pocket, for use in those situations where he must respond, but where his partner or other person cannot understand what he trying to say. This system is too inefficient for use in situations where George must initiate communication quickly and accurately. A system that uses traditional orthography, combined with pictures in some cases, may be all that is needed to allow George to become a good initiator in familiar community situations. George will also retain his notepaper for backup when communication may break down, and, of course, for making notes regarding adding new items to his communication AAC system.
Vocabulary
Assessment showed that George has retained a good vocabulary. His communication needs are not driven by vocabulary, or lack of vocabulary, per se; his primary communication needs are driven by social situations where he must be able to initiate communications efficiently and effectively in order to get what he wants, or where he must be able to respond quickly and accurately in order to satisfy the needs of others. By virtue of his age, his education, his cognition, his abilities to read and write, and his rehabilitation progress over the last three years, George is an adult. George's continued rehabilitation must be based on the principles of adult education. The process of building the vocabulary that he needs for an AAC communication book, for example, is a process that George must engage in himself. As Gentlemen (2001, p. 194) concluded, "As clinical issues gradually give way to a broader focus over time, it becomes even more vital for a person with TBI to drive the [rehabilitation] process themselves..." George left the incubator environment provided by his mother in order to keep that process moving along.
One of the activities that George has chosen to participate in is ushering at church services. His communication needs for this activity are usually non-vocal, such as gesturing with his hand and fingers for someone to come down to the row of pews that he has found for them. Not infrequently, however, someone will approach him during services and ask where the restroom is. For these instances, George realized he needed to respond very quickly and accurately, with minimum disturbance to other parishioners. George created an AAC communication book item that he could refer to when needed that said, succinctly, "Go out the vestibule doors, turn left, go up the stairs, and the rest rooms will be straight ahead at the top of the stairway." He created other sheets with vocabulary to assist him in asking for a book to be put on hold at the library; getting through the checkout line at the grocery store; and ordering his favorite food from his favorite fast food restaurant. He also created an alphabet sheet, so that if he had trouble enunciating a particular word in any situation, he could point to as many letters as needed until his communication partner of the moment understood what he was trying to say. As his experiences in the community become more varied, he will add the vocabulary to his communication book that he needs. This activity will take time and will be driven by George. He regularly uses French-folded sheets carried in his back pocket to make himself notes for any purpose, now he will use this same system to gather data for his communication book.
Display and Physical Arrangement
George's communication book is the long wallet type available from Mayer-Johnson (Boardmaker Catalog No. M782). This is a 4"x 8½" book that fits nicely into his back pocket. For the alphabet pages, George selected the 3x7 grid template in a horizontal or landscape layout. Letters A-U fit on one page, and V-Z on another. For the other specific situational pages, George selected the 1x3 grid template also in a horizontal layout. He felt that what he needs is something that will help him "get going" [with initiating and sometimes responding], especially where efficiently and accuracy in communication is demanded by the situation. When asked why he chose the horizontal layout, George replied, "It's more natural. It's the way I read, left to right." Another advantage of the long wallet communication book is that it is compatible with George's French-folded sheets for note taking. He now folds a sheet of 8½"x11" paper in half long ways, and then folds it into thirds, instead of in half as he had been doing. A couple of folded sheets fit nicely into the communication wallet, and the wallet serves the additional function of providing support for his note taking, rather than using his leg or left hand.
Training
George's new communication wallet is an intervention in his rehabilitation. The NIH consensus conference on the rehabilitation of persons with TBI included two sets of common characteristics of effective interventions: First, effective interventions are structured, systematic, goal directed and individualized. Second, they involve learning, practice, social content and a relevant context (Ragnarsson, 2002, p. 106). These two sets of characteristics were used as goals for the selection of the software, and for the training of George and his communication partners.
1. Software. Boardmaker (Version 5) was selected as the software for making communication books. The Boardmaker software helps in providing a structured, systematic goal directed and individualized AAC system. It would have been possible, of course, to utilize generalized publishing or word processing software. However to meet the above professional goals, procedures would have to be written and separate training done on the use of the improvised software/system. This training requirement is especially important because George is taking a lead role in his own rehabilitation and is creating his own communication book pages. Tutorials and a user's guide are included in the Boardmaker package. The trainer must a) use the tutorial and user's guide to learn the software, b) instruct the student to do the same, and c) have the student demonstrate his or her knowledge and skill at using the software. These steps were accomplished with George.
2. Modeling and immersion. Modeling and immersion are two features that are included in the training plan for George and his communication partners. Here is a step by step example of how George will determine when pages need to be added to his communication book, and how he will add and use them. Please note that both the roles of the AAC user (George) and his communication partner (his uncle) are included in the sequence:
a. George feels the need for a meal at his favorite fast food establishment, he expresses his need to his communication partner (his uncle), and together they go to the restaurant. On the way they talk about what each will order, how they "just love that place," and other small talk.
b. George's uncle stands behind him. George has his own money. Each will place a separate order.
c. When it is his turn, George approaches the clerk, and the clerk says, "Good afternoon, may I help you?"
d. George says, "Yes!"
e. The clerk says, "What will you have today?"
f. George hesitates, appears to struggle for words, looks around at all the people and activity going on behind the counter and in the lines next to him, then says, "Lunch!"
g. The clerk looks annoyed and says, "As you can see, we are very busy today. What exactly can I get for you?"
h. George appears to be embarrassed, struggles for words that do not come, then turns to his communication partner with a "Help Me" look on his face.
i. The communication partner, wanting to shorten George's agony, steps in and says, "He will have a cheeseburger with onions, fries and a medium diet coke. I will have a hamburger without onions and a medium iced tea. Same check."
j. The communication partner pays for both of them; they find a table and wait for their number to be called.
On the way to the restaurant George knew exactly what he wanted and was able to express that to his partner, so his partner decided to use full immersion without any advance modeling. In the heat of the moment, however, George could not initiate a correct response. Not all of the consequences of TBI are obvious. People with TBI often "cannot divide their attention between competing stimuli such as conversations in a group." (Gentlemen, 2001, p. 194). But if they are to rehabilitate, others must let them try to succeed, even though they may not succeed right away. When George's primary communication partner was his mother, she ordered his food for him: he didn't have a chance to fail, but he did not have a chance to succeed either.
On the way home George and his uncle talked about what happened and how this would be a perfect opportunity for George to use his newly acquired Boardmaker skills. His communication partner encouraged him to keep his page simple: he wanted to make sure that the pages in his communication wallet did not add to the distractions that are going to be found naturally in social situations. George indicated that he knew what to do, and how to do it, so that it would work for him.
The next day George said that he felt the urge for another hamburger and invited his communication partner to lunch. Here are the steps:
a. The communication partner reviewed George's communication book page, and agreed that it should work.
b. George and his communication partner did role playing, demonstrating how the book will be used. The communication partner played the role of the counter clerk, and George played the role of the AAC user. Then they rotated roles. They repeated this exercise multiple times until George was comfortable with using the book in a simulated social situation.
c. They went to the restaurant. When it was his turn, George looked at his page of his book, and then ordered what he wanted without hesitation.
Allowing someone to build a communication book by him or herself is a time consuming process. Also beware that "specific interventions may be effective at certain times, but not at others" (Ragnarsson, 2002, p. 106). This means that a page in a communication book may not always work as intended, or may work one time but not another time, because social situations are dynamic. Nor is it possible to say with 100% certainty that the communication book, or any rehabilitation intervention for a person with TBI, will or will not make the person an independent communicator. As Hammond, et al. (2004) concluded, "We should keep generalizations of outcomes from dictating what to expect from the individual being treated."
Continuity
Sands' study (as cited in Vandiver, Johnson & Christofero-Snider, 2003) summarized the theoretical approaches to the rehabilitation of persons with TBI and other acquired brain injuries: "[T]he environment affects behavior through the mediation of cognition, and the individual's behavior and cognition, in turn, affect the environment." In other words, the tone of the fast food counter clerk's remark may have affected George's inability to respond correctly, and had George not have had a trusted communication partner behind him, George's behavior in that situation could have been difficult for himself and for those around him. It is very important for George's rehabilitation to continue as a team effort in order to continuously monitor George's progress. At this point the communication wallet as an AAC device is appropriate for George. Professional consultation should be continued, by telephone and email if need be, to assure that George's own development of the pages in his wallet is accomplishing what he wants and needs. The plan is that George will be able to function independently in the future, and, providing adequate progress is made toward that goal, the AAC device does not need to grow with him other than by adding pages as he sees fit. In fact, the goal is for him to feel the need to rely on the AAC system less and less.
George's aunt and uncle have been prepared to help him maintain the AAC system, and they will continue to help him for the next several weeks or months. George's speech and language therapist in his hometown is available to the family via telephone, and will monitor the situation and George's progress.
To help George make progress in social situations that are more unplanned and extemporaneous than ushering parishioners and ordering hamburgers, George must find a communication partner that is more his age. For example, it may be awkward for him to take his aunt and uncle to a dance for twenty-something's. George's cousin is returning from his tour of duty in a few month's, providing he does not re-enlist or relocate, and providing that he is willing to do so, his cousin may make a good communication partner. In any case, George and his family must address the issue of a communication partner. The availability of a communication partner may influence George's decision regarding when, or whether, he will return to live with his own mother. One or more age-appropriate, trained, willing and available communication partners are key to to the rehabilitation of an individual with TBI.
References
Beukelman, D. R., & Mirenda, P. (1998). Augmentative and alternative communication: Management of severe communication disorders in children and adults (2nd ed.). Baltimore, MD: Paul H. Brookes.
Forducey, P. G., Ruwe, W. D., Dawson, S. J., Scheideman-Miller, C., McDonald, N. B., & Hantla, M. R. (2003). Using telerehabilitation to promote TBI recovery and transfer of knowledge. NeuroRehabilitation, 18, 103-111.
Gentleman, D. (2001). Rehabilitation after traumatic brain injury. Trauma, 3, 193-204.
Hammond, F. M., Grattan, K. D., Sasser, H., Corrigan, J. D., Rosenthal, M., Bushnik,T., et al. (2004). Five Years after traumatic brain injury: A study of individual outcomes and predictors of change in function. NeuroRehabilitation, 19, 25-35.
Ragnarsson, K. T. (2002). Results of the NIH consensus conference on "Rehabilitation of Persons with Traumatic Brain Injury". Restorative Neurology and Neuroscience, 20, 103-108.
Texas Education Agency (2002). Exit Assessment: Reading.
Website: http://www.tea.state.tx.us/student.assessment/
resources/online/2002/exit/read.htm
Texas Education Agency (2002). Exit Assessment: Mathematics.
Website: http://www.tea.state.tx.us/student.assessment/
resources/online/2002/exit/math.htm
Vandiver, V., Johnson, J., & Christofero-Snider (2003). Supporting employment for adults with acquired brain injury: A conceptual model. Journal of Head Trauma Rehabilitation, 18(5), 457-463.
Your comments are welcome...
BurbankWire is emailed to subscribers
on a regular basis in order to promote specific upcoming events sponsored by
community organizations.
|
The Picture Communication Symbols ©1981 - 2008 by Mayer-Johnson LLC All Rights Reserved Worldwide. Used with permission.
Keep up with
what is going on in your community
|
|
|
