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Research and Practice in Intellectual and Developmental Disabilities
Research and Practice in Intellectual and Developmental Disabilities
Research and Practice in Intellectual and Developmental Disabilities
To cite this article: Teresa Iacono (2014) What it Means to have Complex Communication
Needs, Research and Practice in Intellectual and Developmental Disabilities, 1:1, 82-85, DOI:
10.1080/23297018.2014.908814
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Research and Practice in Intellectual and Developmental Disabilities, 2014
Vol. 1, No. 1, 82–85, http://dx.doi.org/10.1080/23297018.2014.908814
COMMENTARY
What it Means to have Complex Communication Needs
Teresa Iacono*
The Dignity for Disability Party is a human rights political party in Australia whose
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leader, Kelly Vincent, won a seat in the parliamentary Legislative Council in the South
Australian state election of 2010. This state representation has provided opportunities to
advocate for the rights of people with diverse disabilities at policy level. In announcing a
policy of legal system reform in South Australia, a focus was placed on the particular vul-
nerability of people with complex communication needs (Vincent, 2014). Understanding
the extent of their vulnerability, or the strategies the party has suggested, calls for an
exploration of what it means to have complex communication needs.
Before considering what may be different for people with disabilities, it is worth con-
sidering the complexity of everyone’s communication needs.
Certainly, as I sit here with my family of communication devices – smart phone, Inter-
net-enabled tablet, laptop computer connected to a monitor and keyboard, to meet my
ergonomic needs and failing vision – complex seems an appropriate description.
The difference between what is complex for me versus for people with disabilities is
that on a day-to-day basis I can get my message across, at least most of the time. Other
than asking for the occasional information technology support, I am pretty independent
and the consequences of communication breakdowns are unlikely to be life-threatening.
For people with disabilities, the consequences of not being able to speak or not being
understood are far-reaching and often serious. Their complex communication needs
require urgent attention.
For people with cerebral palsy, for example, speaking may be a real struggle. Provid-
ing them with a communication device, such as one that involves typing what they want
to say, then hitting a button to speak it aloud may solve the problem. An electronic com-
munication device does just that for many whose disability is mostly physical. However,
they do still need the people they are trying to communicate with to “hang around” with-
out speaking themselves and interrupting their concentration or switching the topic.
No matter how “whiz bang” a communication device may be, creating the message
takes time – much longer than it takes to speak the same number of words, sentences, or
paragraphs. Many people are not patient or comfortable enough with the silence.
People with disabilities may also have to deal with an almost natural tendency for
others to speak to them loudly or in childlike fashion. Perhaps they assume that loud is
*Correspondence to: Professor Teresa Iacono, Head, La Trobe Rural Health School, Faculty of
Health Sciences, La Trobe University, PO Box 199, Bendigo, Victoria 3552, Australia. Tel: þ61 3
5448 9110. Email: t.iacono@latrobe.edu.au
easier to understand for a person who, because they don’t speak, obviously must have
limited intellect.
Some people do have intellectual disabilities that may or may not be associated with a
physical disability or autism. They may also have a hearing or vision impairment. Such is
the unfair nature of disability that they often come in multiples.
As the complexity of the disability increases, so does the complexity of communica-
tion needs and of finding an alternative system; and people with disabilities must also
rely on the skills of others to help them to be a part of a conversation.
There is a whole science around meeting complex communication needs through the
use of augmentative and alternative communication. Speech pathologists, occupational
therapists, and special educators may be well versed in augmentative and alternative com-
munication, or at least aspects of it. Augmentative and alternative communication sys-
tems are diverse, including sign language, letter or communication boards or books,
small message cards, basic or complex electronic devices, and mainstream tablets with
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promises to go some way to addressing this problem, at least for those people who are
assessed as requiring therapy services.
Of course, having a communication aid is only part of what is needed to communicate
if you do have complex communication needs. It seems like stating the obvious to say
that communication is at least a two-way process, but for people with disabilities it is also
a two-way effort.
The policy of legal reform announced by the Dignity for Disability party also includes
that people with complex communication needs be supported by people who can assist
with the communication process.
The communication support needed may be relatively straightforward, such as asking
questions, using simple but not childlike language, checking for understanding of the
question, allowing the person the time to answer, then checking that the answer has been
understood. Depending on the communication system used, the person assisting may also
need to be able to understand signs, or closely observe and record the person’s selections
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of letters, words, or pictures. More skilled assistance may be in the form of helping the
person to construct the message without taking over to the extent that it is unclear as to
whose message it is – the person with the disability or the person assisting?
These examples of reasonable adjustments are required of all mainstream services,
including healthcare, education, employment, and housing, as well as legal services.
The NDIS aims to strengthen these systems to include people with disability (NDIS, n.d.).
However, this stated aim is far from simple to achieve. There is a significant problem
with unequal treatments within mainstream systems of people with disabilities, especially
those with complex communication needs.
Take hospitals, for example. In the United Kingdom, reports have brought to light
serious adverse events, including death, for people with intellectual disabilities and com-
plex communication needs (Mencap, 2007, 2012). Reading these accounts makes clear
serious communication failures between hospital staff and these patients and their fami-
lies, with dire consequences of delays or failures in diagnosis and treatment. Unfortu-
nately, there is evidence of similar problems within the Australian hospital system
(Iacono & Davis, 2003; Webber, Bowers, & Bigby, 2010).
Coming back to the initial question of the meaning of complex communication needs –
well, it is complex. That is the easy answer. More difficult to answer is why people with
complex communication needs, and with disabilities more broadly, are treated so unequally
in society and within various service systems.
Policies such as that of the Dignity for Disability party go a long way towards tackling
this inequity by describing some reasonable adjustments for people with complex com-
munication needs. It is one mainstream system, and it is a start.
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Research and Practice in Intellectual and Developmental Disabilities 85
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