JCPSLP Vol 17 Supplement 1 2015_lores

necessarily involves the collaborative input of a range of stakeholders including the person with complex communication needs. However, the priorities over design and inclusion of topics and vocabulary should rest with the person’s own needs and preferences and not only those of their communication partners (see McNaughton & Beukelman, 2010). All people have a right to communicate for themselves to the extent that they are able (World Health Organization, 2010; United Nations, 2006). Thus, each person’s communication system should be validated as reflecting his or her own preferences and reflecting his or her own voice. Establishing autonomy in communication is of vital importance in the field of AAC, as people with complex communication needs often rely upon communication partners to set up a system that can be accessed by them without influence. Access to the system might also depend upon the involvement of a range of communication partners in determining the person’s message (e.g., partner assisted scanning, encoded communication). Nonetheless, it is possible that a person with complex communication needs may have direct and/or indirect access to a communication aid, and continue to maintain independence or autonomy in communication. Many technologies are now available and in development to support both direct and indirect independent access to computers and communication aids, and reduce reliance upon communication partners to assist in message selection (e.g., various new switch technologies, eye gaze technologies, brain computer interface technologies). Where the speech pathologist considers that a person’s AAC system might not represent his or her true voice, or that the person does not have autonomy in expressing his or her own thoughts, they have an ethical responsibility to (a) raise these concerns with the person and their communication partners so that further actions may be taken to remove harms, and to help the person towards an AAC system that does reflect their own views and preferences; and (b) consult with the Speech Pathology Australia’s Senior Advisor Professional Issues who would then advise if it was a matter to go to the ethics board, which involves a written complaint process. Ethical resource allocation in AAC: working within available resources and seeking to expand resources The ethics of resource allocation are highly relevant in the field of AAC. The demands for AAC services are likely to increase in line with increased survival rates associated with developmental and acquired disabilities, the ageing of the population, public awareness of AAC, and the possibilities afforded by new assistive technologies. Adolescents and adults with lifelong disabilities who use AAC are particularly vulnerable to the impact of increased service demands that are not matched with expanding resources, at a time when they are in transition and moving to a greater need for communicative autonomy (McNaughton & Beukelman, 2010). Ideally, clinicians strive to source the best available research evidence for the AAC intervention and instructional methods, and source resources that will be required for each treatment option. However, not all necessary resources might be available for all potential options. Thus, speech pathologists may be faced with knowing they can do something for the person with complex communication needs, while realising that they might not be able to do

everything that might be necessary or of benefit to the person. Applying the ethical principle of beneficence helps guide clinicians in determining whether their level of expertise and limited involvement might do the person good while avoiding any associated harms (principle of non- maleficence ) (see also Speech Pathology Australia, 2010). The influence of the environment and communication partners over the success or otherwise of any AAC intervention must be considered (see Beukelman & Mirenda, 2005; World Health Organization, 2001). An ethical dilemma may arise when a particular AAC intervention, such as the provision of a speech-generating device, requires accompanying service hours for effective use of the device which might not be available or covered by existing funding arrangements. It might not be considered ethical to conduct a full assessment, then trial of a range of devices, and obtain funding to purchase a device, if there is not also adequate follow-up support to ensure that the device is useful and is not abandoned through lack of support. Potential harms in such a situation of failure and abandonment include communication partners and the person with complex communication needs being reticent to attempt other interventions that might be better supported in the future (Williams et al., 2008). Nonetheless, potential benefits to the person of having the system available and the opportunity for improvements in the communicative environment to occur must also be taken into account. Ethical dilemmas can also arise in relation to decisions based on the relative costs of each AAC option that might suit the person. Provision of a relatively cheap communication aid (e.g., mobile technology AAC system) might or might not be helpful if the communication aid has so few individualisation options that the person can only access some features of the device or only use it in some situations (AAC-RERC, 2010). Nonetheless, while a low-cost system might not meet all of the person’s needs, it might provide some benefit as to warrant exploration as an option for intervention to meet some of the person’s communication needs. Speech pathologists, therefore, have an ethical responsibility to (a) advocate on behalf of clients to funding bodies and governments to remove cost as a barrier to a person’s best option in AAC, and (b) pursue follow-up support and training for the person and communication partners that can be obtained through distributors and manufacturers of the device, and also through formalised peer-mentoring systems if these can be arranged (Ballin et al., 2012). It is also important that clinicians who are aware of unmet needs in relation to multi- modal communication advocate for expanding resources available to meet those needs. Mobile technologies: an expanding range of AAC options The advent of mobile technologies (i.e., touch screen devices that connect to the Internet) with AAC software applications and switches to access mobile device AAC apps (see Farrall, n.d.; 2012) has been hailed a paradigm shift in the field and practice of AAC, owing to the much wider availability and recognition of AAC in the community and a much greater availability of speech aids to people who previously did not have access to these (AAC-RERC, 2010). The introduction and development of mobile technology AAC mean that speech pathologists and others

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JCPSLP Volume 17, Supplement 1, 2015 – Ethical practice in speech pathology

Journal of Clinical Practice in Speech-Language Pathology