Enabling development and participation through early provision of Augmentative and Alternative Communication.
(Williams, cited in Beukelman & Mirenda, 2005, p. 3)
This quote brings to the fore the importance of communication, eloquently explaining the intrinsic human need and desire for communication and giving insight into a life in which it is lacking. It is extremely difficult to imagine life without the ability to speak and be heard, to establish closeness with others through shared experience and social interaction. However, health and educational services appear to neglect the importance of being able to communicate effectively, compared to the emphasis given to trying to improve the physical status of people with disability. While research into occupational therapists' engagement with communication disorders is lacking, the profession is uniquely placed to recognise and advocate for the role communication plays in all aspects of participation.
Augmentative and Alternative Communication (AAC) is a means of enhancing communicative ability that offers exciting, new possibilities. The American Speech--Language--Hearing Association defines AAC systems as having "four components (symbols, aids, techniques, and/or strategies) incorporated to enhance an individual's communication. AAC aids include: communication books, communication boards, charts, mechanical or electronic devices including those that speak, and computers" (Reichle, Beukelman, & Light, 2002, p. 2). AAC examines ways in which people with limited vocal ability can extend their communicative repertoire by supplementing or replacing spoken words. There is accumulating evidence that with recent advancements in AAC technology, people with communication issues can overcome barriers to effective communication, which is vital to enabling participation in occupation, creating relationships and establishing themselves as participants in society.
The discussion below presents the contribution communication makes to health and well-being, and participation in life. It then profiles AAC users, before presenting the evidence supporting AAC use. Accumulating knowledge of AAC provision for children and adults is outlined and future developments considered. The article concludes with a plea to therapists to advocate for AAC for clients with communication needs.
Communication for well-being
Communication is multimodal (Higginbotham, Shane, Russell, & Caves, 2007); it is a highly complex capacity that is required by humans to "be" in the world (Latham & Miles, 1997). If we accept that communication is a vital component of participating in occupation, then lacking the ability to communicate must have a detrimental effect on health and well-being. That assertion is supported by The World Health Organization's (WHO) 2001 publication, The International Classification of Functioning, Disability and Health (ICF), which proposes relationships between communicative capacity, body structures, factors in the environment and participation. The ICF represented a paradigm shift in the way professionals view health and disability, moving away from the impairment based approach of disease to a performance based view of health and functioning (McCarty & Morress, 2009). The ICF is accepted by many as an all encompassing theoretical framework for describing people's health and well-being.c
[FIGURE 1 OMITTED]
In this model, an individual's functioning in a specific domain can be conceptualised as influenced by health condition, environmental and personal factors. As a dynamic relationship exists between these entities, intervention to change any factor, domain, structure or condition creates the possibility of affecting other aspects (WHO, 2001). Viewed from this perspective, the goal of AAC is to overcome activity limitations and reduce participation restrictions.
It has been claimed that "communication is one of the simplest forms of participation" (Chan, Falk, Teachman, Morin-McKee, & Chau, 2010, p. 69). Communication can be explained in the broadest sense as "any act by which one person gives to or receives from another person information about that person's needs, desires, perceptions, knowledge, or affective states" (Reichle et al., 2002, p. 3). How could we function in society without the ability to give or receive information? Kielhofner (1995) asserted the ability to coordinate action and share information was part of everyday occupation and that humans pursue opportunities to participate and communicate with others. This perspective on the centrality of communication to human life was emphasised further by Bray (2003), who stated that communication with other people is one of the basic fundamentals of human functioning. The lack thereof can be devastating (Reichle et al., 2002). Using the ICF to assess the effect of communication dysfunction accentuates the significance of communication in all areas of life (Threats & Worrall, 2004).
At an individual level, communication can also be framed as a human rights issue. As one participant involved in developing The New Zealand Disability Strategy (Ministry of Health, 2001) stated "I have the right to dignity, to develop my potential, to use my qualities and skills" (p. 3). Human beings have a need to communicate, and in law they have the right to communicate and to receive communication. Therefore, is it not our role as occupational therapists to assist clients to meet their occupational potential, by engaging in the provision of effective communication systems?
Augmentative and Alternative Communication (AAC)
Beukelman and Mirenda (2005), who are highly regarded researchers in the AAC field, categorically stated that AAC systems are capable of enhancing communication development and social participation for anyone with communication needs. They further claimed that AAC interventions underpin the essential foundations for language development and can facilitate the development of natural speech (cited in Hustad, Keppner, Schanz, & Berg, 2008). Narratives from research participants consistently report that AAC allows people to participate in life and to establish relationships for life. For example, one AAC user asserted "I can talk, I can get this house, I can use the phone, I can make new friends, I can talk to taxi drivers, I can go to the pub, I can go anywhere" (McCall, Markova, Murphy, Moodie, & Collins, 1997, p. 252). Although consumers, family, friends, and even professionals may perceive AAC systems to be complicated, when individual needs are assessed and the correct system implemented, then the benefits are potentially vast. However, AAC is not merely the provision of a technological solution: "the technology is not magic... a piano alone doesn't make a pianist, nor does a basketball make an athlete" (Beukelman & Mirenda, 2005, p. 11).
AAC user profile
People who rely on AAC come from all walks of life, unified only by requiring assistance to communicate. This is both compelling and complicating for all involved in AAC systems. Accurate assessment of communication needs and wants is essential and in terms of provision of an appropriate AAC system, assessment is just the beginning of the process. As individual requirements of AAC are so complex, and communication needs are equally complex, users will often use many communication systems. In fact, over their lifetime, AAC users are highly unlikely to stick to any one method of access or any one device (Beukelman & Mirenda, 2005). Users will opt for different tools for different functions, for example, a smaller device when out and about or a larger more complex device for home use and production of written language (Beukelman & Mirenda, 2005; DeRuyter, McNaughton, Caves, Bryen, & Williams, 2007; Higginbotham et al., 2007). Mainstream technology components, such as touch activation screens, cell-phones and personal computers, can now be accessed by some people with complex communication needs, with most at a reasonable cost. Technological advances have improved the availability of AAC systems and brought significant improvements in speech output capabilities, portability, durability, financial cost, programming capabilities, and the variety of available input modes (Reichle et al., 2002).
A variety of AAC devices can now be accessed by users in a variety of environments. AAC users who have powered wheelchairs can have systems mounted to their chairs, allowing them to drive and converse without the need for assistance. However, DeRuyter, McNaughton, Caves, Bryen and Williams (2007) noted:
Most AAC technologies have not derived benefit from the concept of 'convergence'; that is, providing access to multiple communication functions and electronic tools in a single device ... unlike mainstream technologies such as the cell phone, which can act as a calendar, camera, music player and internet browser. (p. 259)
Evidence of communication outcomes using AAC
AAC has been an established field of study since the mid 1970s, yet despite dramatic growth, very little efficacy research exists and that research is fraught with challenges (Higginbotham et al., 2005). Published studies are generally small scale, due to the complexity of both subjects and AAC, and the rapidly evolving technology systems available. Nonetheless, evidence of the efficacy of AAC has been accumulating over the last two decades spanning from early childhood through to older adulthood (Schlosser, 2003).
AAC systems for children
Typically developing children attain speech and language skills in early development. These skills allow social interaction, conceptual development, expression of needs and wants, and set the foundations to later progress literacy and language skills (Light & Drager, 2007). If a child has a deficit in communication, that deficit can alter brain development dramatically and globally impair cognitive function (Hustad et al., 2008; Latham & Miles, 1997). The implications of deficits in communication, regardless of the cause, can also lead to educational and social isolation (Romski & Sevcik, cited in Hustad et al., 2008). The importance of communication in overall learning is evident in the New Zealand Curriculum (Ministry of Education, 2007), where communication is a component required in all three learning strands (Values, Key Competencies and Learning Areas) in the "Directions for Learning".
Research conducted by Pennington and McConachie (1999) analysed the communication interface between mothers and their severely disabled children who were not using AAC systems. The results obtained supported those of previous studies of mother-child communications, which showed constrained conversation patterns and levels of elevated maternal directiveness, very little initiation of conversation by children and conversation characterised by adult dominance. Conversely, recent research by Bartman and Freeman (2003) and Sigafoos et al. (2004) demonstrated that both aided and unaided AAC systems can have a positive effect on the communication skills of young children. Research with children using aided systems, both non-electronic and electronic, also had positive communication outcomes (Charlop-Christy, Carpenter, LeBlanc, & Kellet, 2002; DiCarlo & Banajee, 2000; Johnston, McDonnell, Nelson, & Magnavito, 2003; Romski et al., 2010). Additionally, studies with very young developmentally disabled children have shown that dynamic display AAC technologies improved vocabulary acquisition (Light & Drager, 2007). In practice contexts in New Zealand, however, expensive and expansive dynamic AAC systems are rarely used with pre-school children.
In school aged youth with severe oral communication impairments who had shown no advancement in their communication in the previous two years, longitudinal studies have demonstrated that use of the System for Augmenting Language (SAL) improved both communication use and the vocabulary of the participants (Sevcik, Romski, & Adamson, 1999). Similarly, the "rich, multimodal means of communication enabled their participants to both successfully and effectively communicate with adults" (Romski, Sevcik, Robinson, & Bakeman, cited in Sevcik et al., 1999, p. 40). Their increased vocabulary enabled the participants to engage with a different circle of communication partners, which in turn has the potential to extend their vocabulary and communicative competence.
Further evidence comes from Bridge School, in San Francisco, which has a firm focus on enabling students to engage fully in community life through the use of AAC. Hunt-Berg (2005) investigated the intensive use of AAC systems at the school over a 15 year period, by conducting a retrospective study of longitudinal descriptive design. Participants ranged from 11 to 26 years of age and successful students transitioned into inclusive educational settings. By the end of the study, most of the students were actively engaged and participating both academically and socially. Similarly, Calculator (1999) recalled that in his research experience, the establishment of AAC hastens increased active participation in students, enabling initiation and interaction with a wider circle of communication partners.
To correctly display the efficacy of AAC interventions, it is vital to include thorough participant descriptions (Chan et al., 2010). Accordingly, Chan and colleagues have published a number of case studies of one student's effective use of an AAC system which enabled him to communicate in a more efficient manner and to produce much longer messages. "The enjoyment he experienced from having the ability to direct the conversation instead of just answering yes or no to our questions was as obvious as the grin on his face" (Chan et al., 2010, p. 77). The student became able to engage in conversations of his choice, participating in meaningful occupation by using his AAC. Other published case studies also demonstrate increased narrative skills through use of AAC (Bedrosian, Lasker, Speidel, & Politsch, 2003; Soto, Yu, & Hanneberry, 2007; Soto, Yu, & Kelso, 2008; Waller et al., 2001).
A case study of young girls with cerebral palsy also provided evidence of important progress in early language skills, and expressive communication using two different AAC devices (Mathisen, Arthur-Kelly, Kidd, & Nissen, 2009). The authors commented on the importance of a team approach to achieving positive outcomes. Thus to achieve participation in communication, the process itself requires effective team communication.
Selecting an AAC system for children
Light and Drager (2007) asserted that:
It seems uncertain that there will be a unilateral answer to the question of the comparative effectiveness of AAC systems. Instead it seems that the effectiveness will be determined by a complex interaction between the various factors, including factors intrinsic to the child, extrinsic factors such as communication partners and social context, as well as the overall purpose of the interaction. (p. 205)
One consideration they highlighted is the need to access AAC systems that can mature with young children, with language systems inherently supporting their ability to transition from one level of complexity to another. If systems do not evolve in communication complexity, the child will be limited by a communication system with endless restrictions. Another consideration is that AAC technology has not yet unleashed what could ultimately be realised for young children with complex communication needs. That would require AAC technologies that will cultivate the capacities, preferences, and priorities of its users, and acknowledge their assets and limitations (Light & Drager, 2007), serving the needs of even those students with severe disabilities (Case-Smith, 2005). A further consideration is the need to be aware of normal child development when addressing AAC needs. As Ayyangar (2002) stated, the school years represent a major transition period when a child progresses from the home environment to a more structured, peer-oriented environment that necessitates the development of various social skills. Throughout adolescence there is a move from complete dependence on the family to individual identity establishment. Because communication and social functioning are essential to most activities and forms of participation (Voorman, Dallmeijer, Van Eck, Schuengel, & Becher, 2010), it is essential that children learn and develop by being active participants and not passive observers (McCarty & Morress, 2009).
Adolescents and adults
An important area of use for AAC is in post-secondary education. One investigation of the communication experiences of seven young adults attending college found that most of them engaged in competitive general education programmes. However, a common issue was the slow speed of communication with AAC (Atanasoff, McNaughton, Wolfe, & Light, cited in McNaughton & Bryen, 2007). Another area of need for AAC users is in the work force. Research conducted over a six year period, investigated a programme created to offer adults with speech disorders instruction for use of AAC (Bryen, Slesaransky, & Baker, 1995; Bryen, Potts, & Carey, 2007). Most participants reported substantial improvement that enabled them to participate in many major life activities. They could communicate with strangers, participate in group conversations, maintain a source of income, and acquired new skills such as, engaging in advocacy activities (Bryen, Slesaransky, & Baker, 1995). A follow up to this programme focused on the goal of employment. Participants reported improved skills to seek employment, manage their disability and work, general communication skills, and information technology skills (Bryen, Potts, & Carey, 2007).
Leisure is another important occupational domain, and the ability to actively participate in leisure activities has wide reaching benefits for health and well-being. Dattilo et al. (2008) used an online focus group to investigate AAC users' perceptions and their leisure participation. Participants noted that being able to engage in leisure occupations improved physical and mental health, enhanced networks, increased independence, educated society, and gave them enjoyment. They concluded that, more than any other modality, their AAC devices allowed them to be involved and independent and were their greatest support in the pursuit of leisure. Cara stated "Our lives are better fulfilled with the use of AAC. I don't want to think of how life would be without it" (Dattilo et al., 2008, p. 24). It should also be noted, the participants also mentioned that using AAC could be time consuming and difficult in some conversational situations.
A decade earlier, a study of AAC by users and their communication partners found that participants in both groups cited more advantages of high-technology than low-technology systems (McCall, Markova, Murphy, Moodie, & Collins, 1997). The primary difficulty cited with low-technology systems was communicating with people who were unfamiliar with the system. It was also reported that low technology systems did not meet the user's full potential. Then again, high-technology systems were reported to break down sometimes, caused greater difficulty in having a private conversation, and required effort to access. It is not known whether advanced technologies pose the same problems. Nonetheless, researchers have consistently reported that AAC systems improve communication efficiency, and systems that store long messages improve communicative competence (Yorkston, Smith, & Beukelman, cited in Laffont et al., 2007). Additionally, integrated devices have been shown to be associated with a higher level of satisfaction in relation to decreasing dependence because of their ability to control several appliances, such as the TV and computers (Angelo & Trefler, cited in Laffont et al., 2007). Similarly, Laffont et al.'s (2007) trial of speech synthesizers in the home concluded that participants' satisfaction was high when related to higher levels of use. This is not surprising as a higher level of participation in daily activities is known to give greater satisfaction.
A recent and somewhat controversial method of AAC is eye gaze. In a 2007, comparative study of eye tracking technologies, individuals with normal range of eye movement were found to be more successful using eye gaze to access systems than had previously been possible (Phillips, Flemming, Lin, & Suemori, cited in Higginbotham, Shane, Russell, & Caves, 2007). Advances in technology have made participation possible for those who were previously without an effective means of activating communication devices. Higginbotham et al. (2007) argued that whilst eye-tracking technology has considerable potential for effective AAC, it can also interfere with the communication process. Accordingly, some have concluded that eye-gaze would be better utilised for written output such as computer use, sending e-mails, and talking on the phone than for face-to-face interactions (Levine, 2006; McFarland, Sarnacki, & Wolpaw, cited in Higginbotham et al., 2007). Finally, consistent with research reporting a reduction in social isolation and loneliness when older adults participated in functional communication using a computer (Aguilar, Boerema, & Harrison, 2010), participants who use AAC were found to be less lonely than participants without AAC (Balandin, Berg, & Waller, 2006).
Future considerations for occupational therapists
Wilcock (1993) asserted that "to prevent disorder humans have developed ways of using their capacities in adaptive, inventive and exploratory fashions to the extent that they provide purpose, reward and the pursuit of happiness" (p. 3), thus recognising human resourcefulness. To unleash that potential through the provision of AAC, a large number of challenges will have to be faced. An integrated team approach appears to be a crucial component for implementing effective use of AAC (Beukelman & Mirenda, 2005; Higginbotham et al., 2007; McNaughton & Bryen, 2007). This should include the AAC user at the forefront, with family, whanau, caregivers, and professionals all collaborating to find an effective system of use. For children and early communicators, systems should not be over-complicated, but do need to be user friendly and aesthetically pleasing because for children and young adults, the look of an AAC device plays an important role in its acceptance (Smith, cited in McNaughton & Bryen, 2007).
As previously discussed, AAC devices need to be individualised for the user, incorporate levels of literacy and language skills to enable educational and academic participation, and grow at the rate required by the user to meet their communication potential. AAC should be reliable, and usable in a variety of environments, and with a variety of communication partners. DeRuyter et al. (2007) argued that AAC devices need to be interoperable with a wide range of devices in order to support the participation of individuals with complex communication needs. The ability to control and interact with other assistive technologies as well as existing and emerging information and communication technologies is vital (Bryen, Potts, & Carey, 2007; DeRuyter et al., 2007).
As we have argued, the ability to communicate is "of fundamental importance to psychosocial adjustment in society. Communication difficulty may result in social isolation, challenges with interpersonal relationships, mental and emotional changes, difficulty or inability to return to work, and corresponding lack of independence" (Bose, McHugh, Schollenburger, & Buchanan, 2009, p. 798). Evidence supports the use of AAC systems as tools to enable communication (Lund & Light, 2006), which in turn develops occupational potential, enhances participation and fosters self-determination. Those possibilities align with the theory of the "centrality of communication to all human functioning" promoted by Threats and Worrall (cited in McLeod, 2004, p. 78).
The World Health Organization's ICF makes it clear that the ability to communicate is integral to achieving health and well-being. Effective AAC systems can allow an individual with impairments to overcome performance problems and activity limitations and engage in meaningful occupation. The argument advanced in this paper is that engaging in communicative occupations can enhance health and well-being by providing social interaction and friendship. Conversation can challenge and stimulate mental capacities and increase feelings of well-being. Similarly, 'doing' everyday occupations can elicit a sense of belonging. For occupational therapists, advocating for the provision of effective AAC systems is not simply a matter of communication. It is about promoting opportunities to belong in the local community and in society; it is a matter of basic human rights.
* Augmentative and Alternate Communication (AAC) systems promote language skills, literacy and cognitive development;
* Through facilitating self expression, AAC enables participation in occupation, relationships, and community belonging;
* Occupational therapists have a professional responsibility to advocate for AAC, as a matter of human rights.
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Mahoney Topia (Occupational therapist)
Carlson School for Cerebral Palsy
Department of Occupational Science and Therapy
Faculty of Health and Environmental Sciences
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|Title Annotation:||FEATURE ARTICLE|
|Author:||Topia, Mahoney; Hocking, Clare|
|Publication:||New Zealand Journal of Occupational Therapy|
|Date:||Apr 1, 2012|
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