JCPSLP Vol 17 Supplement 1 2015_lores

Ethical issues in augmentative and alternative communication

Ethical issues in augmentative and alternative communication Barbara Solarsh and Meredith Allan

I n this edition of Ethical conversations we consider ethical issues that may arise when working with people who require an augmentative and alternative communication device. Communication is a basic human right. This fact is at the core of all debate about augmentative and alternative communication (AAC) and ethical practice. Everyone has the right to a means of communication. People have the right to the communication aid and strategy that will enable them to have the best quality of life. I was happy with my communication device without voice output, until I saw a voice output device. Although it took months and months to acquire the voice output device, I did not mind. I had something to look forward to. Now I know the empowerment of voice, I do not like being without it. I can manage without voice output, but I do not like going back to second best. (AAC user) These rights have been clearly endorsed in the United Nations Declaration on the Rights of People with Disability (2006; http://www.un.org/disabilities/convention/facts. shtml) to which Australia is a signatory. For the first time ever, communication using an AAC device or strategy is recognised as a legitimate means of communication for people who do not speak, just as sign language is recognised as the communication system used by people who are deaf. As a signatory, Australia has made a commitment to work towards practice of these human rights for people who require and use AAC. The complexity of providing AAC intervention is embodied in the belief that “a communication disability does not just belong to the individual. It belongs to the entire environment of which that person is the focal point” (Sandwell Centre, UK, personal communication). AAC intervention cannot succeed without the inclusion of people and issues related to the “entire environment”. AAC intervention is also applied across a wide range of disabilities and cognitive levels. It may include electronic communication devices and/or non-electronic communication aids and strategies. For the speech pathologist working with an individual who uses AAC, four areas of intervention are key: 1. all aspects related to the individual, including physical ability, cognitive level, and diagnosis must be considered; 2. focus must also be upon environmental factors which will impact the success of the AAC intervention in real life;

3. the appropriate communication device, aid or strategy must be selected, with a particular focus on the inclusion of the communication aid user or family members, remembering the need for multi-modal intervention; 4. advocacy for an individual using AAC is imperative to enable the person to communicate effectively in the face of many practical limitations. The “Participation model” as described by Beukelman and Mirenda (2005) provides practitioners with a comprehensive framework for AAC assessment and intervention. It identifies the barriers to participation that must be addressed if a person using a communication aid is to become a successful communicator. To identify such barriers, a comprehensive assessment of the skills and abilities of the communication aid user (identify access barriers) is required, together with a review of relevant factors in the environment (identify opportunity barriers). Traditionally speech pathologists have developed a high level of skill in dealing with the individual with the communication difficulty, in this case the AAC user and the access barriers related to the individual. However, they also need to address the opportunity barriers related to the environment in which the person communicates. In reality, the essence of AAC intervention is based on a balance between what is ideal for the person, what the system provides, and what the therapist can deliver. The scenarios below highlight some of the ethical issues AAC practitioners may face. These issues apply to both electronic communication aids (e.g., a Dynavox™ or Lightwriter™) and non-electronic communication aids (e.g., a picture-based communication book or board, or alphabet board). In addition to these aided strategies, they also apply to unaided strategies, such as key word signing (e.g., Makaton). The issues that arise will be considered within the ethical principles of: beneficence and non-maleficence (do no harm); truth; justice (fairness); autonomy; and professional integrity. Case scenario: Jenny Background Jenny is a 4-year-old little girl with Down’s syndrome, who lives with her mum Mandy, and 8-year-old brother, in a small regional town. Jenny is starting to show signs of frustration when she wants something and her mum cannot understand what she wants. Jenny does not use

Barbara Solarsh (top) and Meredith Allan

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

www.speechpathologyaustralia.org.au

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