ACQ Vol 12 No 2 2010

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ACQ Volume 12, Number 2 2010 93
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 speech, but vocalises
and will sometimes take her mum to something she wants
and point to it. The visiting early intervention speech
pathologist, Bev, has assessed Jenny and provided a
comprehensive report, recommending that Jenny should use
Makaton key word signing plus picture-based
communication aids. Jenny was very responsive when Bev
used basic gestures to ask Jenny to bring a ball. Bev also
recommended that Jenny attend the local preschool where
teachers have agreed to accept her but have expressed a
need for information and support as they have never had a
child with disability at the preschool before. They have also
expressed the need for a teacher’s aide. Bev feels that, with
time, Jenny could learn to use a basic speech-generating
device to make simple choices, like choosing a song at
school, or to help her to actively participate at circle time
(e.g., have animal sounds recorded on the device so she can
“sing” “Old MacDonald had a farm”).
Jenny’s mum, Mandy, works part-time and is
overwhelmed by the need to learn Makaton and become
the agent for developing all the aided language resources
Jenny needs in order to learn to communicate effectively.
In 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;
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
Ethical issues in augmentative
and alternative communication
Barbara Solarsh and Meredith Allan
Ethical conversations
Barbara Solarsh
(top) and
Meredith Allan