A young child, twelve years old with spastic cerebral palsy (CP) experiences difficulty with communication. The child has limited sentence length as a result of shortness of breath, an implication of increased tone throughout the body, requiring the child to use more effort to control her movement. The girl also has poor lip closure, which interferes with pronunciation, making her spoken language hard to understand. Communication challenges another individual, a woman of forty diagnosed with Amyotrophic Lateral Sclerosis (ALS), a progressive degenerative neuromuscular disease involving destruction of the motor neurons in the spinal cord, brainstem, and motor cortex of the brain. The disease causes progressive muscle weakness, which ultimately affects mobility, dressing, speech, and breathing. For this woman, the disease has progressed to the late stages and as a result the woman finds herself completely dependent in all areas of her life, unable to communicate verbally, as a result of progressive weakness and breathing difficulties. Both of these individuals would benefit from an alternative method of communication designed to match the unique needs and abilities of each individual.
With the advances made in medical technology over the years, the individuals mentioned above have an increased lifespan due to new medications and medical treatments. Advanced technology also increases survival rate among children born premature or with birth defects. People who experience serious injury have an increased chance of survival following these injuries; however, even with an increased chance of survival, these individuals may not develop or recover abilities to the extent that a typically developing individual would. Decreased abilities place a greater demand on technology to compensate for skills undeveloped, diminished or lost to allow these individuals to participate to the fullest extent possible in everyday life. Both of the individuals mentioned above would benefit from technology enabling them to communicate, however the same technology will not work for both, with each individual needing technology that meets her own individual needs and abilities.
A variety of complications can result from injury or problems discovered at birth. Communication is one area that injury or defects at birth can have an effect on. Communication, especially through language, provides a simple way to both express and understand thoughts and needs in everyday life. Today’s society relies on communication through language, especially in fields where customer relations are a part of everyday routine. When a communication barrier exists, people often cease to communicate with each other. Two people who attempt to converse and find that they speak different languages illustrates a communication barrier. Communication barriers also exist when an individual is unable to communicate through spoken language.
Alternatives to spoken language do exist, for example those unable to hear communicate through sign language. Two problems come to mind when using sign language: first not everyone knows sign language, and second not everyone who may need sign language has the upper body motor control to use it. This illustrates only one barrier to a persons inability to communicate. Disability and other conditions sometimes also interfere with communication as shown in the two examples in the beginning of the paper. When a person once able to communicate loses the ability to communicate through the use of speech, symbols or writing, the individual must seek out alternative methods to replace lost abilities. On the other hand, young children born with an inability to communicate through speech, symbols or writing require alternative methods that not only allow them to communicate but that also enable them to develop more advanced language skills, such as higher level grammatical skills, as they age.
The development of augmentative and alternative communication (AAC) resulted from the need to design an alternative to spoken communication. The American Speech-Language-Hearing Association (ASHA) defines AAC as “an area of clinical practice that attempts to compensate (either temporarily or permanently) for the impairment and disability patterns of individuals with severe expressive communication disorders (i.e., the severely speech-language and writing impaired)” (Sevcik & Romski, 2000, p. 5). AAC consists of two separate categories of technology: augmentative and alternative devices. Augmentative technology provides enhancement to an individuals existing voice to enable the individual to communicate and be understood by those around them. The young girl with CP introduced at the beginning of the paper would benefit from this type of technology, which would make her natural voice more understandable. The woman with ALS would benefit from alternative communication as a result of her inability to produce spoken language. Alternative communication includes voice output devices, which replace the users natural voice. AAC consists of both high technology and low technology devices, ranging in complexity from sign language to computer programs. People of all ages access AAC in todays society, so both consumers and professionals recommending and using this technology must know what works and what does not.
AAC users today have diverse abilities and needs; users vary in their age, level of cognitive function, and in the amount of functional movement throughout their bodies. When AAC companies design products, they must take into consideration the abilities of their consumers to increase the marketability and accessibility of their products. One way to monitor and potentially increase accessibility is by involving AAC consumers in the design of AAC products. The purpose of this paper is to look at the needs of populations who access AAC, to identify preferred features of AAC based on previous research, and finally, to identify what role, if any, the consumer has played in the design of AAC in the past and the role they could play in the future.
AAC companies realize that no two AAC consumers have identical needs and abilities, however the ultimate goal with any AAC device is effective communication. When designing AAC, companies first establish two basic principles. They determine the purpose of the technology and then look at the abilities of the people most likely to use the device. With these principles in mind, they then add a multitude of other factors such as what is to be communicated, to whom, where, when, how. Companies then proceed to design a product to fit the criteria.
People of all ages seek out AAC for a variety of reasons. AAC companies must take into consideration everyday life at various developmental ages in order to incorporate the appropriate vocabulary, operating system, and even appearance of the technology. Looking at the two examples presented in the opening paragraph of this paper, one can see that these two individuals have their own unique needs. The language skills of the child with CP at the age of twelve have not developed grammatically to the extent of those of the woman with ALS at the age of forty, and because the two individuals are at different points in the lifespan, each one requires different vocabulary to take part in everyday roles. Most recently, research has looked at this difference, targeting AAC for pediatric populations as an area that needs to be expanded upon to better meet the needs of children, especially to facilitate peer interaction (Caswell, 2002). Although people of all ages access AAC today, companies have designed a majority of the existing AAC technology for the adult population.
Janice Light, a researcher from Pennsylvania State University states that, “most of our technologies have been developed by adults and reflect our conceptual models of the world. We need to consider how children think about the world” (Caswell, 2002, p. 46). Some AAC speech output devices for children incorporate children’s voices into the technology, allowing the user to select the voice, male or female, the user prefers. Thus, when interacting with peers the child’s “voice” resembles that of other children the same age. Light and other researchers have now begun working on a way to incorporate the way a child thinks into an AAC device because children do not view the world the same way adults do.
AAC for children should also support language development. Research shows that language changes as a person develops across the lifespan. For the pediatric augmented communicator in the beginning stages of language acquisition, the AAC device must meet and support the child’s developmental linguistic needs. AAC should include age appropriate language as far as vocabulary and sentence structure. For example, children form two word phrases before they move to full sentences in language development. A communication board that shows a picture of a cup for “thirsty” should say “drink please” instead of “can I please have a drink.” In adolescence, children use code-switching, meaning that they use one vocabulary/language with their peers and a different one with their parents and other adults (Berger, 2001). AAC technology for adolescents should allow the user to program both sets of vocabulary into the device if desired. AAC companies should have experts in language development on staff to incorporate developmental needs into AAC devices, which can ultimately improve user satisfaction and meet developmental needs. One company, Prentke Romich, reports that they have fifteen to twenty Speech-Language Pathologists (SLP’s) on staff, who have an open invitation to provide input to product design (B.R., personal communication, April 19, 2004).
The parent/guardian of the pediatric AAC user, another population in contact with AAC technology, should have a role in the design of AAC based on their level of interaction with the pediatric AAC user. Parents play a large role in a child’s life and so often they must be familiar with the AAC technology used by their child. They typically help the child operate the system in the home environment. If a parent struggles to communicate with and understand the child as a result of the AAC device, the parent may become frustrated and not encourage the child to use the device. Instead they may revert to a previous form of communication, not easily understood outside of the home (Murphy et. al., 1996).
As noted above, AAC companies design the majority of their products for the adult population. People in this age group often live lives filled with a variety of roles, such as spouse, parent, employee, friend, etc. When a communication problem exists, the individual needs a device that has the capability to meet as many needs as possible, to allow the user to participate in a variety of desired life roles. Just as parents need to communicate with their children, adult AAC users also need to communicate with their peers, coworkers, family, and others. Communication partners must be able to understand the communication output from the AAC device for communication to be functional (Sevcik & Romski, 2000). Over time, adults have identified important features they desire in AAC, which include the device containing the appropriate vocabulary for each life role and portability of the device.
With the populations accessing AAC increasing, the field continues to grow. Researchers in the field of AAC conduct research to find out what AAC consumers want incorporated into AAC technology. Researchers want to know what works and what does not. AAC companies use this research to constantly update and improve technology; however, some AAC users discontinue use of their AAC device soon after receiving the product for a variety of reasons. Research shows that nearly one-third of all purchased assistive technology devices are abandoned (Murphy, Markova, Collins, Moodie, 1996). The field of AAC must find out the reasons for abandonment of the devices not only to increase sales of their products but also to enable those who need AAC to benefit from the technology. Because communication is vital to expressing basic needs and for social interaction, AAC companies need to provide adequate technology to meet the needs of their consumers.
Researchers have worked with consumers to identify features AAC users want included in their AAC devices. A study done by McCall et. al. entitled “Perspectives on AAC Systems by the Users and by their Communication Partners” focused on high-technology AAC systems, for example computer programs and voice-output devices, versus low- technology AAC systems, which includes communication boards (1997). Advantages and disadvantages were found with both groups of devices. Users reported high-technology systems were prone to break down, whereas they often perceived low-technology devices as indestructible. High-technology systems included a larger vocabulary, although communication partners identified certain output voices as difficult to understand. Low technology systems have a limited vocabulary, a disadvantage, however some users perceived the inexpensive cost of these devices as an advantage. This study identified that AAC systems may have an effect on the users’ effective communication and quality of life. Increased quality of life resulted from use of high-technology systems, while low-technology users reported frustration with the low-technology devices (McCall, Markova, Murphy, Moodie, Collins, 1997). Another study done on laptop computers, a high-technology device, identified additional disadvantages of these systems. The main problem areas identified in this study were portability, availability of software, battery life and access to power supply, and ease of repair if damage occurred (Priest, May, 2000).
Through various other studies, researchers and consumers have identified specific features that all AAC devices should include. For example, users have identified in many studies the importance of availability of appropriate vocabulary. AAC vocabulary in the past could be compared to Maslow’s hierarchy of needs. The base of Maslows’ hierarchy includes the basic needs of food and shelter. Once a person finds his basic needs met, he can move up the hierarchy and work to fulfill safety needs, the need for belongingness and love, esteem needs, and finally the need to live up to his fullest potential, known as self-actualization (Myers, 1999). AAC manufacturers first include in AAC devices the vocabulary to express basic needs, which is vital to everyday life, however, users also have a need to be social. Few AAC users in these studies had the necessary vocabulary available in their AAC device to initiate or conclude a conversation, which gave them little control in social interaction. This lack of control decreased the users motivation to use the AAC device (Murphy et. al., 1996). To remedy this, manufactures must move up Maslow’s hierarchy of to fulfill AAC users needs to be social beings. Increased vocabulary is only one example of a desired AAC feature. The following list includes other reasons taken from a study done by Cheryl Goodenough-Trepagnier (1994):
Now that studies have uncovered these features, AAC manufacturers must incorporate them into their product designs, to improve products and increase user satisfaction and accessibility. As evidenced above, knowledge of these improvements comes from the people who work with the products in everyday life. AAC users, their communication partners, and the professionals educating the user on use of the technology, all know what works and does not work in everyday communication situations, and because of this, AAC companies should value their input. With the knowledge of features consumers desire available to the AAC companies, the question now is do the companies not only value the consumers input but do they incorporate the desired features into AAC technology?
Companies manufacturing AAC products have made changes to products over the years to make them more marketable to their consumers. A number of companies interviewed for this paper reported involving consumers in the design of AAC technology, and have updated products based on consumer input. Worlds + had a consumer using Easy Keys who was not able to use the original design of the product. The consumer contacted the company and its staff who rewrote the program to meet her individual needs with no additional charge (W., personal communication, February 6, 2004). Dynavox Systems modified a computer screen that users reported hard to read when in direct sun light. The same company also changed the computer operating system in their AAC from a proprietary operating system, which was custom designed by the company and only operated with software designed for it, to a Windows operating system to make it more compatible with pre-existing software technology. This change in operating systems made the technology less expensive since users only had to buy the software instead of a whole new system. By designing a computer operating system into AAC products compatible with Windows, a general operating system, the company enables the user to install the software on any computer system that uses Windows (S.M., personal communication, February 25, 2004). Another company, Prentke Romich, manufactured a product known as the Liberator. Users of this product complained that it was heavy in weight. As a result of these complaints, when the company manufactured their next product, the Pathfinder, they decreased the weight (B.R., personal communication, March 28, 2004).
In addition to giving feedback on the weight of products and the operating systems built into technological devices, consumers have also provided feedback regarding the cost of products. As technology becomes more advanced consumers have seen a rise in cost of AAC systems. Many products have additional software or hookups sold separately, raising costs even more. Zygo Industries identified the ZYGO MACAW, a simple recording device, as a product that needed changing. Over time, the company received feedback from teachers, parents, clients, speech-language pathologists, and social workers asking them to add something more. Consumers requested increased recording time as an example of one modification to the Zygo MACAW. This led the company to design the current MACAW, which has “virtually all the characteristics that could be wanted in a digital recording communication aid” (L.W., personal communication, March 3, 2004). However increased features led to the problem of increased cost. Hence, the company designed yet a third product, the Talara, that closely mirrors the original MACAW in simplicity, but also has over ten years of technological advancement designed into it and is cheaper than the new MACAW. For example, the original Zygo MACAW had only sixty-four seconds of recording time while the Talara features forty-five minutes of available recoding time. The company also has another product, the MACAW 3 Series, that has seventy-eight minutes of available recording time (L.W., personal communication, March 3, 2004). The Logo on the company’s website for this product states, “What you’ve asked for” implying that the company responded to consumer feedback asking for additional recording time at an affordable price.
Consumers feedback should be used not only to change existing technology as was the case in the above examples, but also to enhance future technology devices from the initial designing stages. Consumers have identified features they would like included in AAC, which AAC companies have added to a variety of AAC technology devices. One example of a feature desired by AAC users is a dynamic display, preferred over a static display, on communication boards/screens/computers (L.M., personal communication, March 10, 2004). A communication board, one example of a static display, has an unchanging display. Computers have dynamic displays where the user can either touch the display or use a pointer to click the desired icon, which then opens a new display. Over time, users reported preferring high-technology devices having the ability to store multiple displays, over static displays. Dynamic displays increase the options available to the user in one device because by touching one button the user can access multiple options within the device. This is an example of a company knowing user preference and then in turn incorporating the feedback into future design of other AAC products.
The above paragraphs offered examples of how AAC companies accept and use consumer feedback, however, by increasing the consumers role and including them in the initial design of products, AAC companies could receive consumer input as the product goes through the design process, including desired features from the beginning. Many AAC advocates today realize that the input from AAC consumers must drive the trend to improve design and technology. Sarah Blackstone and Kevin Caves, in their article entitled “Envisioning the Future of AAC,” state that, “augmented communicators need technological solutions that work for them in their everyday lives and in the real world. This means that communication appliances need to meet consumer expectations and be reliable, powerful, and easy to use in daily communication situations.”(2002, p. 2). A second article, “Future AAC Technology Needs: Consumer Perspectives,” suggests that the industry needs to rethink the role that consumers may play in the design and development of future AAC technology (Blackstone, Williams, Joyce, 2002).
To find what type of communication exists between the consumer and AAC company and also the role the consumer plays in the design of AAC, five AAC companies agreed to participate in interviews. Words + stated that a majority of their communication with consumers comes through reports from company representatives. Upon purchasing a product, the consumer receives up to four hours of one on one training time with a company representative. This time is part of the service price paid for upon purchase of the product. These representatives travel to the consumers home and educate the consumer on the use of the equipment. Representatives also work with consumers to fix a product if a problem arises (W., personal communication, February 6, 2004). Zygo Industries reported that they communicate with the consumer indirectly through other professionals. Designated employees visit with and talk to teachers and therapists who work directly with the AAC user, and these professionals give feedback and generate ideas for future product features. Zygo Industries stated that they find this form of communication most helpful because the end-users typically do not have communication abilities before they have communication aids, which makes communication difficult. However, if users have the technology and ability to reach the company, the company is always willing to listen (L.W., personal communication, March 3, 2004). Both of these companies, along with the other three, identified common communication pathways such as email, Toll-Free numbers and website links as ways the consumer can get in touch with the company.
In addition to giving feedback, consumers currently play a more active role in AAC design in a few AAC companies. When Gus Communications first began designing and manufacturing AAC technology, their products were devised by professionals familiar with AAC technology but not actual consumers. Today their technology is virtually entirely designed by customer involvement and feedback (G.H., personal communication, February 16, 2004). Dynavox systems too involves consumers in every step of the AAC process by bringing them into the company to work directly with Dynavox employees, ultimately contributing to new design and development of AAC products. For example, the company has a mother of an AAC user in Pittsburgh who works directly with the company on design. They also have a Speech-Language Pathologist who has built Gateway page-sets, the displays on computer screens showing available options. This woman works directly with AAC users and therefore can incorporate their needs into the design. In addition, a Speech-Language Pathologist created the Word Power 3100 Series. Once designers have completed these products, Dynavox brings in consumers to test equipment before placing it on the market. Finally, consumers and other professionals working with AAC users accompany Dynavox employees when they attend trade shows, both locally and nationally (S.M., personal communication, February 25, 2004).
Consumer involvement goes one step further at Prentke Romich Company. The company not only welcomes consumer feedback, which its employees collect through AAC camps, home visits with AAC users, and by instant messages, but this company hosted an intern who used AAC and also has two employee AAC users. The company subscribes to ACOLUG, which is the Augmentative Communication On Line User Group Listserv. The mission of Prentke Romich Company, “to help people with disabilities achieve their potential in educational, vocational, and personal pursuits,” guides the company’s relationship with consumers, and so the company takes consumer feedback very seriously (B.R., personal communications, March 28, 2004). Prentke Romich keeps a running list of consumer feedback and has made changes to products based on consumer input. Like Dynavox Systems, Prentke Romich brings in consumers to test products before they go on the market.
Not all AAC companies have the same philosophy on consumer involvement. Zygo Industries stated that they do not seek out consumers. They have been active in the field of AAC for over thirty years and feel that they are thoroughly familiar with the nature of the potential users of their products. They claim that their “products have, for the most part, been developed because therapists, teachers, etc., have asked them to solve specific client needs” (L. W., personal communication, March 3, 2004). They do interact through telephone, email, FAX, etc.; however, they only rarely try to involve the consumer in actual design of the AAC products. In place of the consumer feedback the company uses long-term knowledge and understanding, good engineering practices, and design ideas to make the products look attractive to clinicians, who often purchase the products for the user. In their opinion, it is more important to target clinicians rather than direct users (L. W., personal communication, March 3, 2004).
As evidenced above, consumers have gained a very active role in some AAC companies over the past few years. Communication between the company and the consumer, whether a professional or user, continues to increase. This move toward increasing consumer involvement in AAC design may increase user satisfaction. As stated earlier in the paper, users perceive greater involvement in the AAC process when they feel the company values their opinion. Although communication with the AAC user is difficult, especially prior to them receiving the AAC technology, other options may exist for communication to take place between the AAC user and the manufacturer. For example, many AAC companies use email, Toll-Free numbers and website links to get in touch with consumers, however, prior to receiving a device the potential AAC user may be unable to use these pathways. In fact even after receiving the AAC device, the user may still not have the abilities to use these pathways. Perhaps AAC companies could open alternate pathways for consumers.
Consumers have gained a growing role in AAC companies. Prentke Romich Company stated that they have AAC users on staff. This gives the company an opportunity to see how AAC products work in everyday life. This type of consumer involvement can drive technology in a new direction, geared toward meeting the AAC user’s need to be a social being, participating in a variety of life roles. A person unable to speak may be cognitively intact and because of this AAC technology should not limit opportunities for growth and development cognately or socially. An important fact AAC companies must continue to keep in mind is that, “as with all abilities and disabilities, there are individual differences in communication patterns” (Sevcik & Romski, 2000, p. 6).
The field of AAC is moving in a new direction as it heads into the future. Janice Light (2002) and other researchers agree that the field will shift from the current focus on designing technology that will allow individuals to express basic needs to a future goal of enhancing the quality of an individual’s everyday social interaction (Sevcik & Romski, 2000). Researchers at the Rehabilitation Engineering Research Center on Communication Enhancement work to discover what features consumers at various ages find desirable and also attempt to solve underlying concerns that make existing AAC devices difficult to use (Blackstone & Caves, 2002). This may be the most important type of research going on right now in the field of assistive technology. If consumer’s needs are not met, they simply will not use the devices and their communication will most likely suffer.
Consumers need to have a voice. If consumers do not have an active role in the process of AAC development and the companies fail to do the necessary research to discover what their consumers want, the AAC company will not have the knowledge to meet the augmented communicator’s needs. “Research shows that consumers who do not believe they are involved in the selection of their assistive technology devices are more likely to discontinue using them than individuals who feel more involved” (Blackstone, 2002, p. 5). This implies that the next step for the field of AAC is to further integrate the augmented communicator into the development process in its entirety, which some companies interviewed for this paper have already begun to do. AAC companies must also complete a follow-up check on the consumer to identify the consumers level of satisfaction with the technology. Researchers have begun to devise outcome scales to measure the impact the device has on functional communication, quality of life and consumer satisfaction. AAC industries can take the results of these scales to improve products overall or, if possible, to make individual modifications to a product to meet a specific consumer need.
Based on the interviews with each company, consumers have gained a more active role in AAC design. The consumer’s role has gone beyond giving feedback, and now includes collaboration with specific companies on AAC design. Consumers are becoming involved in every step of the AAC process, and hopefully, future research on AAC user satisfaction will show positive results regarding AAC use. Communication is vital for every individual, and with this in mind, AAC technology should strive to match the needs and abilities of each user to allow the user to reach his full potential and maximum quality of life.
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