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SIG-20 Cognitive Disabilities & Technology

INITIAL ASSESSMENT OF INDIVIDUALS WITH SEVERE COGNITIVE DISABILITIES FOR AUGMENTATIVE COMMUNICATION

Cheryl Trepagnier Rehabilitation Engineering Program University of Tennessee, Memphis Memphis TN 38163

Abstract

Evaluation of the potential for improving the quality of life of individuals with severe cognitive disabilities through assistive technology requires an ecological perspective. One task of the evaluator is to gain some understanding of the contributions of cognitive, motor, psychiatric and situational factors to the individual's current style of functioning, in order to assess the potential for change and determine whether modifications may be necessary in other aspects of the individual's care. Another task is to coordinate with other providers of service to this individual in order to address the needs of the whole person. The decision to institute a new way of interacting with others is one in which the person with disability would ordinarily be expected to participate. Before imposing a change on someone whose cognitive disabilities make it difficult for him or her to participate in the decision, the evaluator needs to assess its ecological impact. Some guidelines for making this assessment are offered, and illustrated by examples.

Introduction

The diagnosis of severe mental retardation is rarely, if ever, unique. Neurological involvement extensive enough to produce global severe cognitive deficits usually affects other body systems as well. On a functional level, the interaction of the deficits resulting from the primary impairments often gives rise to secondary deficits. For example, the atypical social behavior of children and adults with autism elicits atypical social and language response on the part of persons who interact with them, including parents and research investigators, among others (1,2). Disabilities tend to be unfortunately synergistic, and, conversely, it is rare that functional outcomes can be directly and uniquely attributed to single underlying causes. At the same time, evidence of severe motor or psychiatric deficits in the presence of a diagnosis of severe or profound mental retardation should be treated as a red flag. It is possible, and frequently the case, that someone with severe motor disability is classified as having severe retardation because of assumptions about the relation of motor ability to cognition, or overly concrete interpretation of developmental level scores on unadapted tests. This is more often the case with older individuals but may also be encountered in school-aged children. The augmentative communication evaluator has the opportunity and responsibility to attempt to untangle these factors, in order to estimate how changes in communication or in other aspects of the individual's function might nudge the person's interactive style in the direction of greater enrichment and control. Following are some informal guidelines for carrying out this assessment:

Observe

The first component of evaluation at this stage is observation of whether and how the individual interacts in typical unstructured settings. Does she initiate and maintain interaction? Is she actively avoiding social interaction or oblivious to it? Is this a typical day or a bad day? Is this the individual at her social best, with the people she prefers?

Listen to the individual's vocalizations, if there are any, and note the circumstances under which they occur and the effects they have on others. In a behavioral sense, the effect they have is their meaning. If others disregard the vocalization, or repeat parts of it in an "in quotes" manner, the speech is not functional, and the phrases are probably stereotypies. Continuous chanting which rises to a higher pitch and increases in volume when others approach or try to interact serves to keep people at bay and maintain social separation. In contrast, screaming may have the behavioral effect of bringing people over to see what is wrong. It may also deter family and others from taking this person on outings in the community, an effect which may or may not be part of the individual's intention.

Attend to the individual's history

Both the written records and conversations with people who know the individual well are invaluable in assessing the potential for improving quality of life with augmentative communication. There may be information in the records which will provide clues to latent abilities, such as former communication modalities; undeveloped interests which could provide motivation (e.g., the information that the individual used to have a pet), or to the presence of modifiable barriers, such as an indication that glasses used to be worn. It is also important to interview the persons who know and are fond of the individual. Your task will be easier and more likely to be successful if the person who knows your client feels a personal, respectful commitment to him.

An example: Mr. K. was reported to display challenging behavior, including hitting and pinching whenever he was transferred in the standard way between bed and wheelchair. This was regarded as part of his behavior, and persons dealing with him took care to move quickly out of range. In contrast, a care provider who knew him well and would enlist his help in making transfers, and allow him as much control as possible in the manner and pace of transferring reported minimal occurrence of this behavior.

Review of the medical chart and questions to one of the physicians indicated that Mr. K. may have a condition which causes him discomfort when he is moved. Unfortunately the terminology used to describe the condition is unfamiliar to non-physicians. By bridging the communication gap, the augmentative evaluators were able to promote a positive change in this person's quality of life and influence how others perceive his behavior. This example is interesting also in regard to the pragmatics of communication. This gentleman can use speech functionally, and yet did not make clear to his care people that he was experiencing discomfort. One possible interpretation is that he was not accustomed to using words for body parts or the expression of discomfort. Interview of someone who knew him well, however, included quotes of verbal reports of pain in the course of a non-routine activity. This gentleman may have perceived that others knew quite well that he was having discomfort, since some of the time he was transferred in a different manner, without this discomfort, and since he complained by vocalizing loudly and hitting. Like many of us he was exasperated by others' not recognizing the displeasure which to him was entirely obvious. Rather than interpreting the problem as a lack of communicative means, and devising and training this individual in an augmentative technique for doing so, an intervention was chosen which augmented communication among care providers.

Involve yourself

How we describe interaction is inevitably filtered through their assumptions and theories. If you have concerns about the presence of intentional communication, despite reports by others, you won't really be confident unless you experience it. The standard assessment tricks, such as interrupting a preferred activity, or slowing it down, to see whether the individual will act to make the activity resume or speed up; or displaying a favorite object or edible, to see whether the person will act to acquire it, are useful. There is usually not a role at this stage for an adapted response mode. It's not the success of the communication but the presence of intent that you are trying to determine, and that will in turn determine your decision regarding use and type of augmentative technique. It is almost a tenet of our faith in assistive technology that if there is need and motivation, suitable transducers can be identified and their use trained, whatever the constraints. Assessment with adapted transducers over time is a subsequent, usually much lengthier process.

Involve yourself in other aspects of the problem. Do cross disciplinary lines. Talk to the seating specialist about the individual's prospects for more functional positioning, or the recreational therapist about novel meaningful recreational activities. You will not know whether there are possibilities for doing things differently unless you voice your questions, concerns and ideas and discuss them with people who have the knowledge you lack.

Conversely, coming from a background of experience with assistive technology, you bring a perspective which you may take for granted but which professionals from different backgrounds may lack. You need to communicate your perspective to them so that they can consider the issues in the light of how the individual's communicative function could be augmented. Like disabilities, interventions can be synergistic, but only if they are coordinated and integrated, not only in their implementation, but in their conceptualization.

An example which has parallels to assistive technology is the area of psychiatric disorders and the use of psychotropic medication. Medication can play an important role in the lives of these individuals, for good or ill, and persons working with this population need to have at least an informed consumer's level of knowledge (e.g., 3). In general, most people are aware of the dangers of neuroleptics. A recent review of self-injurious behavior (SIB), which is found in a high proportion of persons with severe retardation, came to the conclusion that SIB is best characterized as compulsive behavior (4). This is of interest since it raises the question of whether medications which have begun to be used to very positive effect with obsessive compulsive behavior in the general population of persons with psychiatric disorders may have some benefit to offer to persons with severe retardation. We find ourselves having to educate the public that people with apparently insurmountable motor and cognitive challenges can and do communicate effectively, and have the potential to lead more rewarding lives than used to be imagined. Similarly, new developments in biological psychiatry have begun to make it possible for some persons previously incapacitated by certain types of symptoms to lead fulfilling lives. We are in the unaccustomed position of needing to have our consciousness raised regarding the possibilities now open to persons with disabilities of neuropsychiatric origin.

Describe specifically

When you are reading through the individual's history, the most useful information you can find is in descriptions of behavior in context. If the history included hypertext connections to video records which let you see how the person behaved under various circumstances, it would be even more useful. In the meantime, the best service you can provide for others who will review these records and for yourself when you follow up to assess whether change has occurred, is to provide a rich picture of the person's typical communicative behavior, including affect and manner.

Summary

The guidelines discussed above exclude use of developmental tests which yield numbers in terms of months or years of mental age. Also excluded are formal assessments of language comprehension. Observation, interview of those who know the individual best, and interactions in which you engage are much more informative and pertinent to assessing potential for use of augmentative communication. The evaluation discussed here is the stage preceding evaluation of motor control. The outcome of this evaluation will be as rounded as possible a picture of the person's communicative function in his context, and the determination of whether there are unmet communicative needs. The presence of intent and involvement which exceed expression; the existence of situations which are frustrating for lack of a means of expression; communicative attempts which are being misinterpreted or dropped; or misinterpretation on the individual's part of the communication and behavior of others, are all indications that augmentative communication may have a role to play. In the absence of any mismatch of this type, the next question is whether there may be the potential for expansion of the person's sphere of activity and interaction. The means of provoking growth may be communicative intervention, including augmentative devices or pragmatics instruction, or it may be a matter of intervening with training and support for direct care staff. Alternatively, it may be an intervention in another domain. It may take evaluation of seating to determine whether more upright posture can be achieved, and visual assessment to determine the need for glasses, or use of communication techniques that do not require upright posture or visual contact or it may take adjustment of medication so that the individual is awake during the day, or so that his time is not totally consumed with obsessive activities, or changes in staffing so that someone is available to play basketball when the individual requests it, before communication options can be developed.

By attending to the ecology of the person with severe disability, the evaluator maintains the appropriate perspective: ask not whether the individual can do augmentative communication, ask whether and in what ways augmentative communication, in interaction with adaptation of other aspects of the human and physical environment, could contribute to the quality of life for this individual.

References

(1) Dawson, G., Hill, D., Spencer, A., Galpert, L., & Watson, L. (1990). Affective exchanges between young autistic children and their mothers. Journal of Abnormal Child Psychology, 18(3), 335-345.

(2) Tantam, D., Holmes, D., & Cordess, C. (1993). Nonverbal expression in autism of the Asperger type. Journal of Autism and Developmental Disorders, 23(1), 111-134.

(3) Julien, R. M.. (1995). A Primer of Drug Action. New York: Freeman & Company.

(4) King, B. A. H. . (1993). Self-injury by people with mental retardation: a compulsive behaviour hypothesis. American Journal on Mental Retardation, 98(1), 93-112.

Cheryl Trepagnier Rehabilitation Engineering Program University of Tennessee 682 Court Avenue Memphis TN 38163 Put paper on same page since it is the only one in this SIG)