2003 Conference Proceedings

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PROMOTING ACCEPTANCE OF AAC DEVICES BY ADULTS WITH ACQUIRED NEUROLOGICAL COMMUNICATION DISABILITIES

Presenter
Robert J. Cantine
DynaVox Systems LLC
2100 Wharton St., Suite 400
Pittsburgh, PA 15203
Phone: 412-381-4883, ext. 515

Beginning January 1, 2001, Medicare began accepting claims for Augmentative and Alternative Communication (AAC) devices. This has opened up an area formerly limited primarily to children and individuals with developmental disabilities to adults with acquired neurological disorders. The possibility of funding AAC devices for these individuals offers them the ability to retain societal roles that were engaged in before the onset of the disorder. However, "adults with acquired communication disorders are a unique clinical population" (Beukelman, p. 107). The sudden or gradual loss of communicative competence may cause anger and depression. An unwillingness to accept the implications of the disorder leads many to refuse to acknowledge that they may no longer be able to use their natural speech and they resist attempts to introduce AAC devices. In addition, unlike individuals with developmental disabilities, there is often no strong support staff in place for adults with acquired neurological disorders. Therefore, there is no one to encourage, facilitate and reinforce the use of AAC. In many cases, even the acquisition of an AAC device does not guarantee its acceptance. Often the device ends up sitting on a shelf and the individual continues to struggle to communicate. These hurdles to acceptance are described by researchers in the field of assistive technology as avoidance and abandonment (Scherer, 1993).

An Australian survey of speech pathologists on the use of AAC by individuals with acquired neurological communication disabilities (Russell and McAllister, 1995) reported these findings. When asked to rank the most common reasons for not introducing AAC, 64.1% ranked a patient's resistance to AAC of primary or secondary importance. Regarding factors having the greatest influence on a positive outcome with AAC, the patient's attitude toward AAC was of primary or secondary importance to 86.1%.

There are various factors that affect acceptance of an AAC device. An AAC Acceptance Model proposed by Joanne Lasker and Jan Bedrosian (Beukelman, p. 109) separate these factors into three categories: milieu, person and technology. Although such things as emotional state, skill needs and environment are very important n overcoming avoidance and abandonment of AAC, "[technological factors] are often the parameters used during the selection process to determine whether a device is appropriate for the user"(Beukelman, p.118). As the AAC industry matures and products become more sophisticated, these factors are increasingly taken into account. The technology considerations proposed by Lasker and Bedrosian are as follows: durability and reliability, customizing and programming, service delivery, ease of use, appearance, compatibility, size and weight, cost and voice quality (Beukelman, p. 110). Several of these interact with other aspects of an individual's acceptance of AAC and it is necessary to understand their impact.

The appearance of a device is of fundamental importance. Studies have shown that "AAC users, partners and strangers may view aids designed for regaining or supplementing function as visible signs of disability"(Beukelman, p. 33). It is necessary, therefore, that the device design should take into account attractiveness and cleanliness and avoid obtrusive attachments. In addition, it is important that the device has an age-appropriate appearance. Many AAC devices are designed primarily for younger users and incorporate bright colors and creative fonts that may have a childish look. A more professional, technological look would help reconcile an older augmented communicator to the device. The appearance of the display should also be considered. Pairing brightly-colored picture icons with written words may make it appear simplistic and immature and may be offensive to adults who retain literacy skills.

Ease of use is of primary importance to users who have severe physical limitations. Rate enhancement features like word prediction and abbreviation expansion are a means to reduce the amount of effort and fatigue produced when using the device. When used in conjunction with switches, head pointers and other access methods, features such as these are effective in enhancing the rate of communication and in conserving energy.

Voice quality is important both in acceptance by the user and by his or her communication partners. Digitized, or recorded, speech is often clearer than synthesized speech, but many augmented communicators do not have a therapist, caregiver or spouse available or willing to program in all the necessary recordings. In addition, it has been found that many older adults place a high priority on self-sufficiency and privacy and may be unwilling to ask others for help in programming. Poor-quality synthesized speech reduces intelligibility and can lead to rejection of the device. Many speech synthesizers have an unnatural robotic sounding voice and this may also lead to rejection by the user and often by communication partners. "They appeared to understand the need for AAC but were not as accepting of high-technology techniques"(Lasker and Bedrosian, pp. 4-5). Due to the robotic sound, many unfamiliar communication partners feel intimidated or feel as if the user is snapping orders at them.

Compatibility with other technologies is a vastly motivating factor in acceptance. The ability to continue to function in a former societal role, such as breadwinner for the family, is often a goal of individuals with acquired disorders. If the AAC device can be used to control a computer and allow the user to remain employed, or if it provides the option for environmental control, thus providing independence within the home or other environments, the user will see it as a useful tool. In addition, computer access allows Internet access. E-mail allows an AAC user to remain in contact with peers and significant others and may be a more comfortable interaction for those struggling with the loss of communication skills. This is demonstrated by the following account by a person with ALS. "I really enjoy using e-mail. I feel on par with others as long as I can compose off-line and then send...it's as though I don't have this terrible disease."(Beukelman, p. 200).

Durability and reliability, size and weight, and cost are factors that are often at odds with one another. If a device is designed to be small and light, it will often not be as durable or reliable as a larger device. In addition, the more resources necessary to make a device as durable as possible and as portable as possible often necessitates an unrealistic cost. It is often necessary for the augmented communicator to decide which is the greatest priority and forego the other considerations.

Although all persons with acquired communication disorders have different communication goals, if their abilities are to extend beyond a mere communication of wants and needs, customization and programming are the most important technological features. All communication requires give and take, the ability to share personal information, or to be able to extend or change a topic. A device that does not offer customization or makes it too difficult denies the user communicative competence. Such a device, if it were acquired at all, would most likely be quickly abandoned.

These are a few of the technological hurdles that the AAC industry must take into account if it wishes to overcome avoidance and abandonment and promote acceptance in adults with acquired communication disorders. Although DynaVox products will be used to demonstrate the steps taken by the AAC industry to overcome these obstacles, the information presented is applicable to many other AAC devices.

Sources:

Beukelman, David R., Kathryn M. Yorkston and Joe Reichle, eds. Augmentative and Alternative Communication for Adults with Acquired Neurologic Disorders. Maryland: Paul H. Brookes Publishing Co., 2000.

McAllister Sue and Alison Russell (1995). Use of AAC by Individuals with Acquired Neurologic Communication Disabilities: Results of an Australian Survey. AAC Augmentative and Alternative Communication, Vol.11, pp.138-146.

Scherer, M.J.(1993). What we know about women's technology use, avoidance and abandonment. Women and Therapy, 14 (3-4), pp. 117-132.


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