People living with complex communication needs

It is all important that people living with Complex Communication Needs (CCN) have a voice and are supported to be heard. Article 21 of the UN Convention on the Rights of People with Disabilities states that Peer Support should:

take all appropriate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice.

A person has CCN if they are “unable to use speech to meet all of their communication requirements, given their age and culture.”

(Porter & Kirkland, 1995)

Communication rights help people have real choice and control over their lives, and enables people to greater safeguarding if they are able to express preferences and

Below are some suggestions to ensure people living with complex communication needs are heard in a Peer Support network:

Before the meeting

  • Peer Support organisers should make expectations clear before the first meeting. Expectations are that everyone consider what it means to have full communication rights.
  • An appropriate agenda for the meeting should be provided to people with CCN and supporters before the meeting in an accessible format.
  • Peer support organisers can ask people living with CCN and their supporter if any modifications are required to meet their sensory needs e.g. people may prefer bringing a sensory object or sitting on the floor. People with CCN may need to face a certain way when communicating. Do volume or lighting levels need to be changed, or when and how food is served? etc.

On the day

  • People living with CCN should be given equal time to “speak” in whatever way they do.
  • The group should try to recognise any and all attempts to communicate.
  • Other people need to stop and listen when a person with CCN tries to communicate in any way.
  • People with CCN can always choose not to speak if they don’t want to, or “speak” in a different way.
  • Group members should ask the Peer Support organiser or supporters if they do not understand what someone says.
  • To have real choice and control a person needs be able to say everything they want to say. This means all people with CCN have a right to use a full language system. This could be a kind of sign language, braille, an alphabet, being helped to scan or type or using a symbol-based system.
  • If a person with CCN has no full language system the Peer Support organiser can help them find an provider for a full language system that suits their needs.
  • No person with CCN should ever be forced to communicate in a way that they do not want to.

 

Useful links and resources

Information on the Graduate Certificate of Education (Special Needs: Complex Communication Needs) at Edith Cowan University, WA. This is perhaps the most comprehensive and up to date course for people wanting to learn about people living with Complex Communication Needs. This course can also be audited by members of the public: https://www.ecu.edu.au/degrees/courses/master-of-education/unitset?id=SPCCNS&crsCd=H08

PrAACtical AAC has an article on ten things to do when using full language systems Augmented and Alternative Communication (AAC): http://praacticalaac.org/praactical/begin-aac-now-10-things-to-do

Here is information on what it is like to use a full communication system (AAC) yourself: https://www.communicationmatters.org.uk/

Valid has some useful Tips for Presenters: http://www.valid.org.au/

In South Australia, the Communication Partner Service assists the communication between those with complex communication needs and criminal justice personnel to ensure the best and most accurate account of evidence can be provided. See link for more details: http://lifelineadelaide.unitingcommunities.org/find-a-service/services/communication-partners/

References

Holt-Lunstad J., Smith T.B., & Layton J.B (2010) Social Relationships and mortality Risk: A meta-analytic Review. PLoS Med 7(7)

Jorgensen, C. (2005). The least dangerous assumption: A challenge to create a new paradigm. Disability Solutions, 6(3), 1-15.

Porter, G. & Kirkland, J. (1995). Integrating Augmentative and Alternative Communication into Groups Programs: Utilising the Principles of Conductive Education. Melbourne, Australia: Spastic Society of Victoria.

Co-authored by WA’s Individualised Services

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The information on this page is also available as a downloadable Quick Guide, by clicking below. There are.pdf and word versions.