Excerpted from Chapter 3 of Augmentative and Alternative Communication for Adults with Acquired Neurologic Disorders, edited by David R. Beukelman, Ph.D., Kathryn M. Yorkston, Ph.D., & Joe Reichle, Ph.D.

Copyright © 2000 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

The staging of interventions is based on three types of knowledge about

1. the body's response to the natural course of the disease or condition,
2. an individual's communication activities, and
3. the society in which she or he wishes to participate.

First, the knowledge of the specific disease process provides the intervention team with information about the underlying pathophysiology, the problems that are typically associated with the disease or condition, and the natural course of the condition. For example, knowledge of the processes involved in ALS identifies the pathophysiology as the degeneration of upper and lower motor neuron cell bodies. This results in a depletion of motor neurons with the accompanying spasticity and weakness. The pattern of pathophysiology may vary from individual to individual. For example, some have primary degeneration of cell bodies in the brain stem. The problems associated with this pattern are the impairment of speech subsystems, swallowing subsystems, and breathing subsystems. Other individuals with ALS experience an initial degeneration in the spinal cord. The associated problems for these individuals will be the spasticity and eventual weakness of the limbs, and, therefore, these individuals experience initial problems with mobility, posture, and so on. The natural course of ALS is quite distinct. Individuals with primary brain stem symptoms have a life expectancy of approximately 2 years following diagnosis, but individuals with primarily spinal symptoms have a life expectancy of approximately 6 years following diagnosis. As is apparent in Chapter 7, which deals with ALS, co-management decisions are increasingly beginning to affect the life expectancy and, thus, the natural course of individuals with ALS. For example, current developments in alternative ventilation, alternative feeding, medications, and nutritional supplements appear to be extending the life expectancy of individuals with ALS and, thereby, changing its natural course. In addition to knowledge of the disease process, knowledge of activity requirements and participation goals of the individual are important.

Based on the knowledge of the disease process and the model of disablement, we have suggested staging strategies for individuals with acquired communication disorders who require AAC services (Beukelman & Mirenda, 1998; Yorkston et al., 1999). The first of these strategies involves individuals with a degenerative natural course. This five-stage model is outlined in the paragraphs that follow.

Stage 1: No Detectable Communication Disorder

For individuals with a degenerative disease, the first stage is no detectable communication disorder. In many individuals with progressive diseases and conditions, speech, language, reading, and writing may not be affected for a period of time after the disease or condition has been diagnosed. Generally, the intervention during this stage focuses on a confirmation that communication is not affected and on the provision of information about the possible impact of the disease on speech, language, and communication. In particular, these individuals and their family members should be provided with clinical decision-making information so that they are aware of the critical indicators that suggest a change in their treatment strategy. In addition, they should be provided with information about where services can be obtained at each critical stage. For example, Chapter 7, which reviews staging for individuals with ALS, will indicate the need to identify the point at which speaking rate has slowed to half of a typical speaking rate. At this point, AAC intervention can be initiated in a timely manner so that their future communication activity needs can be met, and they can continue to participate in appropriate social contexts.

Stage 2: Obvious Communication Disorder with Intelligible Speech, Writing, and Functional Reading

The second stage for individuals with degenerative communication conditions involves an obvious communication disorder that does not extensively interfere with their speech, language, reading, and writing. That is, their speech may be slow, distorted, or variable, but they are still able to be understood and meet most of their communication needs. Intervention in this stage focuses on managing communication effectiveness by compensating for impairment (e.g., by practicing appropriate energy conservation techniques), by assisting their communication partner using contextual information, by simplifying syntax and using standard communication forms, and by modifying the environment to remove adverse conditions such as noise.

Stage 3: Reduction in Intelligibility

In this stage, the communication disorder becomes so severe that speakers are no longer understood. During this stage, interventions continue to focus on optimizing performance and the use of compensations. In addition, intervention may include the teaching of techniques to resolve communication breakdowns by providing partners with contextual information, by monitoring partners to determine when communication breakdowns have occurred, by speaking in short, standard grammatical units, and by learning to assist partners to understand effectively an individual's written and verbal communication.

Stage 4: Natural Communication Strategies Supplemented by Augmentative Techniques

During this stage, when speech, language, writing, and reading alone are no longer effective to meet an individual's communication activity needs, it becomes necessary to provide additional information through augmentative communication techniques. AAC systems might be used to provide information about the topic, the first letter of each word, or difficult or unusual words that are included in a discourse. Although the person with a communication disorder continues to speak using residual speech, during this stage the transition to AAC techniques is completed.

Stage 5: No Functional Speech

During this stage, the individual is unable to engage in functional communication that meets his or her communication needs. Therefore, he or she increasingly depends upon augmentative communication system strategies. Typically, these individuals use a variety of strategies, some of which do not require equipment, others that require low-tech picture boards and alphabet boards, and still others that require extensive electronic multi-dimensional communication systems.

Stable or Recovering from Communication Disorders

The staging of individuals with stable, recovering, or improving communication disorders is quite similar to those described previously for individuals with degenerative disorders, except the order is reversed. Typically, these individuals experience some type of episode, such as a stroke or TBI, that leaves them with no useful speech or with speech that needs to be supplemented by AAC techniques. These interventions are often coupled with interventions to restore natural speech. For example, for individuals with severe neuromotor speech disorders resulting from TBI, requiring an AAC system for many years is not uncommon. Simultaneous with that intervention is an effort to reestablish the subsystems for speech (Yorkston et al., 1999). During this time, efforts are made to assist the individual to regain voluntary control over the respiratory system, the phonatory system, and the articulatory system (e.g., prosthodontic intervention needed in the form of a palatal lift to improve velopharyngeal function). It is not uncommon for these interventions to take many months or years, during which individuals rely primarily on the AAC system for daily interaction. As natural speech begins to be reestablished, the interventions are modified in such a way that natural speech and augmentative communication techniques are combined. In this way, part of the information is provided through speech and the remainder is provided through the augmentative communication system. In time, these individuals are able to carry their communication load increasingly through natural speech. Their use of augmentative communication techniques is restricted to communicating with individuals who have a particularly difficult time understanding them or speaking in adverse situations, such as speaking before large groups. As they continue to recover, their speech may become intelligible, although their speech disorder may still be obvious. Some recover to a stage in which they have no detectable communication disorder. After reviewing the chapters in the book, the reader may realize that this is uncommon for individuals with brain stem stroke or TBI; however, it occurs frequently for individuals with Guillain-Barré syndrome (Yorkston et al., 1999).