The belief that people with an inability to speak or write are also intellectually impaired is widespread in the care community and needs to be tackled head-on, says a researcher who has developed and tested a range of communication tools.

Dr Betty-Jean Dee-Price of Flinders University has been looking at people with complex communication needs (CCN)  after a literature review she conducted found them significantly absent from research cohorts.

She developed, tested and evaluated ways for researchers to better communicate with this group, and says the findings can also be applied in a care context.

The ‘last frontier of disability’

Dr Dee-Price says one in 100 Australians have CCN. This can be present from birth or acquired through stroke, acquired brain injury, dementia or neurodegenerative conditions. She describes it as “the last frontier of disability that’s being understood”, and notes this group is also more like to end up in care facilities.

Dr Betty-Jean Dee-Price

While some people experience intellectual impairment as well as communication problems, this isn’t the case for everyone with CCN, she says. For example, the late physicist and cosmologist Stephen Hawking experienced CCN and relied on assistance known as augmented and alternative communication (AAC).

“These assumptions are so destructive and so frightening. One of the barriers that comes with complex communication needs is that people are isolated,” she told Community Care Review.

“They don’t just suffer the event of not being able to communicate, they also suffer the assumptions the community might make about them, and that is they’ve got nothing to say”

Dr Dee-Price said while speech pathologists are well versed in dealing with people with CCN as well as AAC options, this hasn’t translated to other disciplines like psychologists, social workers or the wider care community.

Augmented and alternative communication

The use of a physical of electronic “talking mat” with visual icons; use of email and social media, or eye gaze techniques can all assist communication.  Visual symbols, smells and music can also be used to convey a message.

“For example, photo elicitation, finding images that correlate with concepts, the use of visual symbols, the use of word lists,” she says.

When communicating with someone with CCN it is important to find out how they indicate “yes”, “no” or a neutral position, she says, whether it’s through  gazing at something, blinking or even grimacing.

“Ask that person directly, could you show me how you say your ‘yes’. Once you know their ‘yes’ and ‘no’ you’ve got a doorway in for a whole lot of things,” she says.

Dr Dee-Price says health professionals and support staff need to understand that there are tools available to prevent people with CCN being excluded.

Become familiar with the sort of augmentative communication a person might use, consider purchasing and training in the use of tools such as talking mats.

“You don’t have to become an expert in AAC, just be prepared to have a go at communicating with people in a different way.”

Dr Dee-Price presented two papers on the topic at the International Society for Augmentative and Alternative Communication Conference in July.

Read more about why we need to improve communication access for the elderly here

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