About This Guide

Communication is a fundamental human right. Under the United Nations Convention on the Rights of Persons with Disability, all individuals have the right to “seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice” (2007, Article 21). Nonetheless, freedom to express and access information can be compromised for service users with communication disability. This Research to Action Guide explores the ‘first principles’ when working with people who have Complex Communication Support Needs (CCSN). Service users with CCSN require additional strategies and/or specialised resources to support their expression or understanding. This applies to:

• People who use formal Augmentative and Alternative Communication (AAC) strategies, such as communication books/boards, picture cards, speech generating devices, and Key Word Sign;
• People with significant receptive or expressive language difficulties (for instance, as the result of a brain injury, stroke, or developmental disability);
• People with severe or profound intellectual disability.

There are currently no clear statistics on the prevalence of CCSN among disability service users in Australia. It is likely to be high. Of the 1.4 million Australians with disability who access formal support services, 44 per cent receive some assistance around communication. In addition, communication is the number one area in which people with disability seek informal (unpaid) assistance. This guide addresses a number of ways for communication partners to enable successful interactions with people who have CCSN through environmental adaptation and the use of specific techniques and resources. 

The role of communication partners

Successful communication is critical to the social, emotional, and physical wellbeing of people with CCSN, and communication partners play a major role in achieving these outcomes.

In this guide, we use the term communication partner to refer to anyone involved in an interaction with someone who has CCSN. This can include family members, friends, professionals, and even strangers. Based on a rapid review of relevant literature from 2007-2017 (see Appendix A), we have distilled a set of guiding principles that partners can employ across a range of contexts, interactions, and with a variety of clients.

Part 1 of this guide examines broad practices that promote respectful and fulfilling interactions with clients who have CCSN.

Part 2 takes a closer look at some specific interaction strategies and tools that can facilitate this process. Nonetheless, these supportive strategies are not always intuitive, and many require conscious effort and training for partners to master. As such, formally building staff capacity in this area can be a valuable investment for organisations of all sizes.

Part 3 of this guide addresses ways to develop an enduring communication support framework around a person with CCSN. This includes ways partners can document and share information about a person’s communication needs.

Finally, in Part 4, we showcase ways that service providers can build communication partner capacity at an organisational level.

Appendix B of this guide links to a range of resources collated by the Research to Action community which may aid in the implementation of these principles within the disability services sector. Note that not all strategies will be appropriate to use with all people who have CCSN. In all cases, the individual’s preferences and identified support needs will be of paramount importance.  

Please download the Research to Action Guide using the links below.

Communication: First Principles

Practice Leader Guide

This guide has been written for practice leaders who are seeking to improve approaches to working with people with Complex Communication Support Needs at their service. It forms part of the Centre for Applied Disability Research (CADR) Research to Action Guide on Communication – First Principles.

What are Complex Communication Support Needs?

People with disability and complex communication support needs (CCSN) require additional strategies and/or specialised resources to support their expression or understanding. This includes:

·     People who use formal Augmentative and Alternative Communication (AAC) strategies, such as communication books or boards, picture cards, speech-generating devices, and Key Word Sign;

·     People with significant receptive or expressive language difficulties (for instance as the result of a brain injury, stroke, or developmental disability);

·     People with severe or profound intellectual disability.

What do I need to know about people with CCSN?

The prevalence of CCSN among people with disability is likely to be very high. Of the 1.4 million Australians with disability who access formal support services, 44 per cent receive some assistance around communication. 

People with CCSN present three unique considerations for service delivery:

1.   Interactions may take longer than those with people who do not have communication disability, due to the time taken to generate messages with unclear speech or using an AAC system, and to repair communication breakdowns when they occur.

2.   Many people with CCSN require extra time and support to understand information, participate to their full potential, and make informed decisions about their care.

3.   Due to a higher risk of misinterpretation, communication partners must be skilled in verifying messages with a person who has CCSN, and clarifying miscommunication where necessary.

The importance of communication partners

For people with CCSN, interactions with a skilled and supportive communication partner lead to greater participation and autonomy, and a more positive service experience.

Formally building staff capacity to better support people with CCSN can be a valuable investment for businesses and organisations of all sizes.

Based on our review of research literature, we have identified the following characteristics of a good communication partner:

Good communication partners…

Are respectful: recognise that people with communication disability have contributions to make.

Are responsive: recognise a person’s communication attempts

Respond to these appropriately.

Are reciprocal: provide ample opportunities for people with CCSN to contribute. Take the time to get to know the person.

Are persistent: troubleshoot communication breakdown

Support understanding: use plain language and familiar words, speak clearly and at a moderate volume.

Are multimodal: supplement their speech with writing, pictures and sign. Communicate with tone of voice, touch, smells, and sounds.

Support expression: scaffold conversations, provide prompts, offer alternative modes such as writing, pictures, and gestures.

Are patient: allow time for people to generate and understand messages and manage misinterpretation. Check they have understood someone's message correctly. Clarify the other person’s understanding

Support alternative communication: support the use of communication books, boards, devices, signs. Operate, update, and maintain these systems

Anticipate and respond: anticipate and respond to changes in a person’s communication or communication contexts

Document: document their knowledge about a person’s communication support needs and preferences

Share: share information with other partners such as new staff, visitors, and communication partners in the community.

Are discerning: check which of these supports will be most helpful for someone.

Are consultative: consult with the person with communication disability, other partners, and specialist services.

How can frontline staff become good communication partners?

Being a good communication partner is more than just being an active listener. It involves being sensitive to the importance of diverse and successful communication, being able to optimise interaction environments and opportunities, and being willing to share knowledge and build the capacity of new partners. This requires a whole-of-organisation commitment to communication accessibility and staff capacity building.

Many of the skills involved in being a good communication partner are non-intuitive and require specific training. Resources and programs for communication partner training are readily available in a range of formats (see the resources list in this Guide for additional links).

Research for this Guide identified several considerations for the effective training of communication partners, including that:

·       Training is most effective when it is tailored to the needs and preferences of each person with CCSN. Partners should be trained in strategies that have already be established as effective and appropriate for that individual.

 

·       Re-watching video examples of these strategies in action can help partners reflect on what went well in an interaction, and what they could change to improve the interaction in future.

 

·       Training is most effective when it occurs within naturalistic contexts (e.g. as part of daily routines or everyday interactions).

 

·       The input of people with CCSN can be invaluable, both in the delivery of training, and/or as the focus of realistic example scenarios.

 

·       Training should be refreshed periodically to maintain staff skills.

 

·       Having one or more dedicated communication champions can aid in skill maintenance. Communication champions are staff members who have received extensive communication training and can support other staff.

How can our service become more communication accessible?

Successful participation for people with CCSN is in part reliant on the values of the organisations that support them. Communication accessibility means that people with CCSN are treated with dignity and respect, given adequate time and attention to get their message across, and offered a range of communication modes¹.

Organisations can be more communication accessible by:

·     Ensuring adequate communication partner training for all frontline staff

 

·     Instilling a top-down commitment to the inclusion of people with disability in the service

 

·     Providing readily-available communication resources, including:

o  Information in a range of accessible formats (audio, visual, Easy English, in-person)

o  Communication books, boards, visuals, and/or electronic devices

o  Access to assessment, funding, and tailored resources for clients who require these supports long-term

 

·     Allocating a longer time for interactions with people with CCSN (for example, providing additional appointment time for therapists or personal care workers when a person with CCSN is being supported)

 

·     Consistently pairing people with CCSN with the same staff, as this allows staff to become more familiar with a person’s specific communication patterns and support requirements

 

·     Reviewing any Occupational Health and Safety requirements that currently impede communication best practice, for instance around the use of communicative touch or emotional engagement between staff and clients where appropriate

 

·     Enlisting people with CCSN to audit your service and provide feedback on its communication accessibility. One examples is Scope Victoria’s Communication Accessibility program -

http://www.scopeaust.org.au/service/communication-access/. Note that it is typical for people with CCSN to be paid for their contributions to training or auditing programs.

Using this Research to Action Guide and resources

This resource is part of a collection on supporting people with CCSN.  The accompanying guide for frontline workers will help develop and refine communication partner abilities. It contains a set of seven principles to realise effective communication support.

Be creative in how you use these resources. Ideas include:

·     Keep laminated copies of the principles on a staff room table or common area

·     Choose a ‘feature principle’ each week to email to staff or discuss in a team meeting

·     Pin principles to a notice board for staff to read or take with them

·     Post in heavily-frequented areas (e.g. toilets, fridge door in a group home) for incidental reading

·     Share links to resources with others via professional networks or social media

A guide has also been developed for people with CCSN. It can be used as a discussion prompt in planning meetings around communication support. It can also be displayed in public areas to show your service’s commitment to inclusive communication practices.

You are welcome to copy, use and distribute these resources within and beyond your services.

For more information about this project, and links to additional resources please visit www.cadr.org.au