Communication: First Principles

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 communication7. In addition, communication is the number one area in which

people with disability seek informal (unpaid) assistance 7. 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

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Successful communication is critical to the social, emotional, and physical wellbeing

of people with CCSN9, 10, 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 intuitive11-13, 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 sizes5, 8.

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 this R2A

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.

Part 1: Promoting respectful and fulfilling interactions

Inclusion and respect share a symbiotic relationship. This section examines the first

principles in building respectful and fulfilling interactions with people who have

CCSN.

Maintaining high expectations for participation

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Recognising people with CCSN as unique and capable individuals is crucial for their

social inclusion.

“Sometimes people ignore me; they are surprised I can speak.”

Person who uses AAC1 “They see my husband as being my carer and they always

talk to him and I get so offended because I’m just like my husband. They think I

can’t understand, but I can.”

Communication partners in Johnson et al.’s study6 described several catalysts in the

development of positive relationships with people who had severe intellectual

disability; one being a recognition of that person’s unique, quirky or admirable

character traits. This recognition of character “came from observing the individual

with others, listening to each other’s stories, participating in social interaction, and

spending time together” (p. 329).

People with CCSN report that their abilities are frequently misjudged, and this

creates major barriers to participation8, 14. Several authors and participants cautioned

partners not to underestimate the abilities of people with CCSN to express

themselves or understand1, 2, 9, and to address the person with CCSN directly in

interactions. Recognising a person’s ability to communicate, even via the most subtle

channels, has been shown to increase participation and autonomy15. At the same

time, it is important to clarify messages and check the extent of a person’s

comprehension, particularly in high-risk legal, financial, or medical situations16. This

can be a difficult balance for partners to strike8.

“It feels really nice that someone . . . someone that just wants to speak with you!

One feels like a human being. It feels ‘Wow!”

Person with Aphasia4

People with CCSN report an interest in talking about a wide range of topics17, yet in

reality, many find their conversations limited to concrete topics such as healthcare or

daily needs4, 9, 17-19. Additionally, some topics such as sexuality or employment may

be vetoed by partners as uncomfortable or irrelevant17.

Providing opportunities to talk about a full and age-appropriate range of subjects is

critical, and a person’s interests should be respected.

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Reciprocity: Sharing the moment

“If you relate to him as well and relate sincerely, that builds a relationship and he

connects with you.”

Support Worker for a client with severe intellectual disability6

Reciprocity is the foundation of most social relationships. Taking the time to share

moments of banter, collaborative activities, or emotional expression (e.g. laughter or

smiles) can support positive interactions with the most complex of communicators6.

Reciprocity also requires participants to share control of an interaction6, 18, 20, 21. Close

attention to a person’s idiosyncratic behaviours (e.g. eye-gaze, facial expressions,

body language, sounds, and even breathing patterns) can offer clues about their

interests and preferences2, 9, 20, 22, 23. For example, a person’s gaze shifts can indicate

their desire to maintain or end a conversation18, 22.

Observational studies suggest that higher degrees of partner sensitivity and responsiveness to these behaviours correlate with a greater number of initiations

from people with profound intellectual disability15, 24.

Optimal communication environmentsMany environmental factors impact on communication success for people with

CCSN and their partners1, 4, 25, 26.

Where possible, partners should try to optimise the environment to enable effective

communication. This may involve:

Prioritising face-to-face communication. Telephone communication may be

difficult or even impossible for some individuals27. Other people may prefer email

or social media interactions due to the slower pace required3;

Minimising background noise and unnecessary distractions4, 9. These can

cause problems for both the speaker and listener;

Scheduling important interactions for quieter times in the day9;

Addressing physiological factors such as positioning, fatigue, temperature,

pain, illness, medications, or stress4, 18.

Activities involving group interactions, meeting new people, reading and writing,

internet browsing, or using the telephone can be particularly challenging for people

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with CCSN4, 11, 26. Support from trained individuals has been shown to increase the

success and independence of people with CCSN in many of these settings26.

Part 2: Supportive strategies

People with CCSN might use a variety of communication modes, including unaided communication (e.g. speech, sign language, gesture, facial expressions, body

language) and aided communication (e.g. picture cards, boards, books, and

technology). It is important for partners to know the full range of communication

modes the person typically uses9, 12, 18, and to be capable of supporting these.

This section of the report identifies strategies for supporting successful interactions

with people who have CCSN. It is important to note that the following strategies will

not be appropriate or helpful for all people with CCSN. Partners should seek

guidance from the person and/or their support network in the first instance, and may

also find it useful to consult a speech pathologist for advice.

PatiencePeople with CCSN have reported that they value patience in their communication

partners1, 3, 4, 14, 19, 28.

“If I am going to say something, everyone is gone, you know. Yes, that’s a

problem!”

Person with Aphasia4.

When partners interrupt, rapidly repeat questions, change topics too quickly, or give

up all together, a person with CCSN may be denied a chance to initiate or respond1, 4,

19, 25, and may feel their contributions are not valued4, 19.

Pausing for at least 10 seconds allows people with unclear speech and those who

use aided AAC more time to generate their message9, 12. Note that pausing for more

than 2-3 seconds is likely to feel unnatural at first. Training and practice is usually

required for partners to feel comfortable and confident with this strategy.

Structured interactionsSome people with CCSN have difficulty expressing themselves due to language and

speech production difficulties or a slower rate of message generation, and may

benefit from some structuring of interactions4, 19, 29. For instance, you could use:

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Yes/No questions and closed choices (e.g. “Are you telling me about home or

Vera’s?”) can also increase response efficiency12, 19 and alleviate word-finding

demands4, 29.

Open-ended questions (e.g. “Are you trying to tell me about how you’re feeling?”)

may help to establish the context of a message without restricting the content29.

While helpful in some instances, over-use of these strategies can limit the freedom of people with CCSN to direct an interaction. They should therefore be

employed cautiously and with regard to the person’s preferences at the time.

Simplifying spoken languageMany (but not all) people with CCSN experience difficulty with language

comprehension. This can impact on a person’s ability to follow instructions,

understand and learn new information, and keep up in social conversations.

“With Sandra you always speak a bit slower because there’s no point racing

through something. Even if she understands, it takes a little while to process it”

Family Member6

Communication partners should speak clearly and at a moderate pace. Speakers

who yell or who slow their rate to an exaggerated level can actually be harder to

understand4.

Plain language can also be helpful16. This involves using shorter sentences and

choosing words that the person is likely to be familiar with. Plain language should still

be respectful and does not preclude discussions about age-appropriate topics.

Non-verbal cuesResearch suggests that many partners rely heavily on speech in their interactions

with people who have CCSN18, yet this strategy will be insufficient for many

communicators.

People with profound intellectual disability, for instance, are unlikely to understand

words, pictures, or text20, relying instead on non-verbal cues such as touch and

tone of voice to understand what is happening. They are likely to benefit from the

use of real object props, multisensory input (e.g. familiar smells and sounds) and

communicative touch, if appropriate2, 18. This might include a touch on the arm or

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shoulder to gain the person’s attention, and the provision of hand-over-hand

guidance to perform tasks or explore objects in the environment.

Visual and written promptsSome people with milder language difficulty can benefit from information that is

supplemented with pictures, symbols, signs, or text5, 9, 11, 30. For instance, you could

use:

Written choice: Providing options as written words

Visual scenes: Meaningful photographs or drawings that can be used as a

conversation prop

Natural gestures and Key Word Sign, where important words in spoken sentences

are highlighted using sign language

Easy English: Simple written resources paired with pictures or photos, which can be

used to structure complex discussions

“Then she wrote! Keywords like this. – – –

She wrote for me, you see. – – –

That was damn good, and then I understood at once!”

Person with Aphasia4.

Another common strategy is the use of aided language stimulation, where partners

model AAC usage on the person’s AAC system or an identical device. This strategy

can have additional benefits for vocabulary and grammar development in children

and adults who are learning aided language1, 31, but may be inappropriate when

talking to established AAC users.

Access to AAC resourcesAs stated in the introduction, some people with CCSN use aided augmentative and alternative communication (AAC) resources such as cards, books, boards and

electronic devices1, 4, 27. Well-chosen AAC systems can be instrumental in improving

comprehension and expression, supporting independence, and reducing anxiety3, 27,

30, 32. An individual’s AAC system(s) must be operational and consistently available

across all communication contexts18, 33. Many adults with CCSN independently

manage their own AAC, but value assistance from a communication partner when

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needed (for instance to set up or charge a device)1, 3. Younger individuals or those

with intellectual disability can also be supported to manage their own AAC system25.

‘‘Using a communication aid is dependent upon another person offering you the

aid and being made aware when you might need it.”

Person who uses AAC3

People with high support needs are reliant on communication partners for most tasks

relating to their AAC system, and it is of little surprise that AAC availability is

generally low for this group25. Establishing and updating AAC resources can be time

intensive27, 32, and partners’ concerns (e.g. that a system is too complex, stigmatising,

or is unnecessary for a specific individual) can also create barriers to their use4, 32.

In contrast, partners may be more ready to accept AAC that results in tangible

benefits such as reduced anxiety or improved co-operation32. Uptake of AAC is

improved when partners are well-trained in its use27, 32 and have been involved in

decision-making from the outset34.

Managing communication breakdown

“Diane said something that was interpreted as chocolate. She was then shown a

choice of objects, the chocolate sauce or the strawberry sauce and she reached

out for the strawberry.”

Support Worker6

People with CCSN report valuing partners who will work to resolve communication

breakdowns3, 19.

When a person’s expressive communication is unclear or ambiguous, it is important

that communication partners check their own understanding9. It is equally important

to check that a person with CCSN has understood what is being communicated to

them. In both instances, this may involve repeating the message back, waiting for

recognition or confirmation, and seeking clarification if necessary9, 21, 35.

Establishing the preferences or assent of a person with profound disability may

require an analysis of the person’s response patterns to objects, activities or

sensations across repeated instances23. Familiar communication partners can also

be consulted to help resolve misunderstandings6.

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Part 3: Enabling an enduring communication support framework

Complex communication support needs are often life-long, but are not necessarily

stable across a person’s lifetime. This section explores principles in maintaining and

adapting communication supports for people with CCSN in the face of contextual,

personal, and personnel changes.

Supporting communication diversityPeople with CCSN show the same diversity as the general population. Some factors

that can place people with CCSN at additional risk of experiencing communication

breakdown include:2, 8, 16

Sensory and cognitive impairments, which are common in people with severe

or multiple disability.

Physical impairments – These can limit someone’s ability to initiate, join or

participate in an interaction.

Limited English proficiency and/or limited literacy. People with CCSN and

their families have a right to an interpreter if English is not their first language.

Limited health literacy – This can reduce a person’s ability to navigate the health

care system and make informed decisions.

Additional discrimination based on a person’s cultural, ethnic or religious

background, sexual orientation, or gender identity can negatively impact on

interactions.

Personal attitudes and values about communication, including grief or

embarrassment about a new or worsening communication disability.

Anticipating and managing changesA person’s communication support needs may evolve over time33, requiring

adaptations to resources and strategies as the person’s health or circumstances

change11, 28, 36.

For example, people who become acutely unwell may require special or

supplementary AAC solutions16, and complications from intubation, sedation, or

medication side-effects must also be considered. For transitions in care (e.g. hospital

admissions or respite), clear hand-over instructions concerning the person’s

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communication needs and preferences should be provided16. Hospitalisation may

also involve the assignment of a support person to act as a communication assistant

or intermediary during the stay.

Sharing and documenting knowledgePeople with CCSN and their long-term communication partners are likely to have

established many strategies for effective communication. Sharing these patterns and

preferences can help new partners to meet the person’s needs more effectively9, 11.

Information can be shared informally by word-of-mouth - a method which most

support workers interviewed by Johnson et al6 expressed a preference for.

“She does talk, she may not verbalise but she definitely talks.”

Daphena, support worker for Yvonne (a person with profound ID) for over 20

years. 2

Partners can also teach each other by working together and offering incidental

assistance, however the practicalities of this can be challenging, particularly for

home support staff who often work alone6.

One way to formally document a person’s needs and preferences is via a personal communication dictionary (PCD). This can help partners to accurately interpret the

person’s behaviours or expressions11.

People with CCSN can also be supported to document or share information about

their own communication needs and preferences. For instance, they may work with

familiar partners to construct an ‘About Me’ book or a wallet card that can be used

during community interactions8.

Developing these resources together can be a positive experience for all involved28.

For assessment or diagnostic purposes, accurate communication profiling may be

facilitated with the use of a formal checklist tool in consultation with a speech

pathologist or other specialist34.

Part 4: Building communication partner capacity

In this final section, we address first principles in building the capacity of paid

partners (e.g. support workers and other professionals). This section is primarily

addressed at employers, managers, and training providers.

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Tailor training to specific individuals and settingsTraining communication partners within naturalistic contexts (e.g. daily routines or

everyday interactions) is essential to the uptake and maintenance of new skills2, 11, 13,

15. The targeted strategies should be tailored to the needs and preferences of the

person with CCSN19, and should already be established as effective and appropriate

for that individual37.

It is also important to recognise communication partners’ pre-existing knowledge and

values about communication2, 11, 32, 38. In many cases, such knowledge can act as a

foundation for future practice11. Conversely, ineffective strategies and inaccurate

knowledge can be a barrier to successful interactions4, 11, 32, but must be confronted

with caution and respect.

Finally, communication partners’ learning preferences should also be taken into

account, as these can vary considerably. For instance, Thiessen & Beukelman39

found that female communication partners typically preferred to learn new skills in

small group contexts, while males typically preferred to study independently.

Learners’ values around the type of training (e.g. step-by-step practical instruction,

remote training, case-based learning, etc.) and their cultural and linguistic

backgrounds are also highly variable and are likely to influence their learning21, 39.

These factors must all be considered in the delivery of training.

Institutional barriers and facilitatorsSuccessful participation for people with CCSN is in part reliant on the values of the

professional institutions that serve them14, 26, 33. Institutional facilitators include the

availability of AAC resources, increased time allocations for interactions, consistent

pairings of service users and staff, adequate training of staff as communication

partners, and a general commitment to inclusion9, 18, 33.

Institutional policies can also impede communication best practice. For instance,

despite the benefits of communicative touch for people with profound intellectual

disability2, observations of 28 direct support workers showed that this strategy was

not commonly used, possibly due to restrictive policies around client contact22.

Similarly, emotional engagement with clients may be seen to violate established

professional boundaries2. Such policies may require revision in light of available

evidence.

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Involving people with CCSN in partner trainingThe involvement of people with CCSN in the training process can be invaluable.

People with CCSN have been successfully employed as in-person trainers5, 40.

Where this is not possible, recorded interactions can also prove useful41. Video feedback is a specific training method where communication partners re-watch their

own interactions with someone who has CCSN, and are supported to generate

strategies for future interactions23.

Skill maintenance and generalisation

“I look forward to doing the auditing each month because I now have some great

friends who work at the leisure centre. The communication boards have made it

more accessible for the public who have difficulty with speech.”Access auditor with CCSN5

Several studies have noted a decline in supportive communication partner

behaviours on follow-up42, 43, suggesting that one-off, isolated training approaches

may be insufficient to create robust changes.

In Victoria, the Communication Access Network (CAN) has tackled this problem by

instituting training and regular audits of participating businesses by paid consultants

with CCSN, to ensure that communication access standards are maintained5.

CAN also institutes ‘Communication Champions’ within disability services.

Champions receive extensive training and ongoing support around communication

accessibility and can support other staff5, though to be optimally successful, some

level of first-hand training for all staff is likely to be important38.

The CAN programs have been reported to be “effective in achieving a positive

culture of communication across the services”5, highlighting the value of adopting a

broad and networked approach to partner capacity building.

Conclusion

People with CCSN report that supportive and knowledgeable partners mitigate

substantial misunderstanding and frustration for all parties4.

Our findings suggest that true partner capacity extends beyond competence in basic

communication strategies. Being a supportive partner means being sensitive to the

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importance of diverse and meaningful communication, being able to optimise

interaction environments and opportunities, and being willing to share knowledge

and build the capacity of others.

Nonetheless, research suggests that many of the skills addressed in Parts 1-3 are

unlikely to be considered by untrained partners11, 13. This necessitates targeted

education around these skills, and is likely to require an institutional commitment to

capacity building and communication access well into the future31.

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Appendix A – Rapid Review Method

This work was guided by a steering committee of people with CCSN and

professionals who work in the communication disability field. The review entailed a

systematic search for scholarly literature from 2007 to 2017. (See search terms and

limits in Table 1, below.) Papers were evaluated against the following inclusion and

exclusion criteria (Table 2), resulting in 42 included studies. The complete review

process is outlined in Figure 1.

Search Limits: English language, full text available, publication date 2006-2017 (10

years)

Databases: Ovid, Web of Science, Deakin University Library Collection (via EBSCO)

Final Search String: ("complex communication needs" OR "severe communication

impair*" OR "augmentative and alternative communication" OR "AAC" OR "severe

and multiple disabilit*" OR "profound intellectual" OR "communication support needs"

OR "communication disability") AND ("communication partner*" OR "interaction

partner*)

Category Inclusion Exclusion

Focus Strategies targeted at or

primarily used by the

communication partner in

naturalistic interactions.

Strategies primarily used by the

person with CCSN.

Specific technologies or commercial

resources for communication.

Population

Chronic acquired,

developmental, or

neurodegenerative

communication disability.

Acute CCSN (e.g. resulting from

acute aphasia or intensive care

procedures).

Deaf people or those with sensory

impairments (unless participants had

additional CCSN such as intellectual

disability or aphasia).

Age Adults/children >5 years Infants and pre-schoolers

Format Original scholarly articles and

reports including case-

Book/article reviews, editorials,

letters or commentary pieces,

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Category Inclusion Exclusionreports and literature

syntheses

conference abstracts <1000 words

Context Not relevant to Australia (e.g.

communication partner training in

low-resourced nations)

Table 2: Inclusion and exclusion criteria

Figure 1: Literature review stages

The final sources included 35 empirical research studies and seven additional

resources (see Table 3). Of the 42 studies, the majority (29) focused on adults. Nine

studies addressed children’s communication, three addressed both ages, and one

did not specify ages. A wide range of communication disabilities were also

represented across this literature (see Table 4).

Publication Type # of publications

Reviews 8Meta-analysis …1

Systematic Review …4

Non-systematic Review …3

Experimental and Quasi-experimental Research 6Qualitative Research 22

Interview Studies …9

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IncludedFrom Review (40) Steering Committee Additions (2)

Reviewed for RelevanceTitle (73) Abstract (49) Full Text (43)

Combined Search ResultsDuplicates Removed (140)

Database SearchesOvid (51) Web of Science (90) Deakin Library via EBSCO (187)

Publication Type # of publications

Survey Studies …2

Observational Study …9

Mixed Qualitative …2

Mixed Methods (qualitative + quantitative) 2

Non-empirical 4Case report …2

Practice Guidelines …2

Table 3: Publication types among included studies

Focus Population # of Publications

CCSN – Unspecified or Mixed 8

People who use AAC 12

People with a Developmental Disability 14

Severe-Profound Intellectual/Multiple Disabilities ...12

Rett Syndrome …1

Autism Spectrum Disorder …1

People with an Acquired Communication Disability 8

Aphasia …4

Amyotrophic Lateral Sclerosis …2

Traumatic Brain Injury …1

Unspecified …1

Table 4: Focus populations of included studies

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Appendix B: Useful Resources

Resource Description Links to Further Information

Key Word Sign

Key Word Sign is the use of

manual signs and natural

gestures to support

communication. It is used to

encourage and support

language development in

children and adults with

communication difficulties. It is not the same as Sign Language.

For more information about Key

Word Sign, including current

training dates and locations, visit

the Key Word Sign Australia

website:

http://www.scopeaust.org.au/key

-word-sign-australia/

Visual Resources and Non-electronic Communication Aids

Visual resources for

communication may include

books, boards, picture cards,

eye-gaze charts, and

comprehension supports such

as picture timetables.

To see a range of different

communication aids with

explanations, visit the NECAS

website (Non-Electronic

Communication Aids Service):

http://www.scopeaust.org.au/

communication-aids/

Easy English

Easy English is a way of

designing written information to

make sense to people who have

difficulty reading and/or

understanding written English.

Examples of Easy English can

be found on the Scope Victoria

and the Access Easy English

websites:

http://www.scopeaust.org.au/

service/accessible-information/

http://

dev.accesseasyenglish.com.au/

access-easy-english-examples/

Talking Mats Talking Mats is a tool to help

people with communication

difficulties express opinions,

For more information about

Talking Mats and how they can

be used, see:

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Resource Description Links to Further Informationchoices, and preferences. http://www.talkingmats.com/

about-talking-mats/#howitworks

http://www.zyteq.com.au/

products/talking-mats

Supported Decision Making

These resources contain

information about providing

decision-making support to

people with mild and

moderate cognitive disability.

Print and film resources have

been developed for three

groups: Service providers,

families and carers, and legal

professionals.

Access a range of free

downloads from:

http://www.scopeaust.org.au/res

earch-project/decision-making-

support-building-capacity-within-

victoria/

Communication Checklists

Communication checklists can

help to reliably track and

document a person’s

communication preferences and

support needs. Communication

checklists can also help in

understanding challenging

behaviour and diverse

communication methods.

Triple C Checklist:

http://www.scopeaust.org.au/

shop/triple-c-checklists-pack/

Checklists for behaviours of

concern:

http://www.scopeaust.org.au/

wp-content/uploads/2015/05/

Communication-Assessments-

for-People-with-Behaviours-of-

Concern-Lit.-review.pdf

Communication Assessment

Profile for people with learning

Disabilities (CASP):

http://www.scopeaust.org.au/wp

-content/uploads/2015/05/11.CA

SP_.pdf

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Resource Description Links to Further InformationSocial Networks Inventory:

http://www.scopeaust.org.au/

wp-content/uploads/

2015/05/15.SNI_.pdf

Communication Matrix (free

online tool):

https://

www.communicationmatrix.org/

Communication Passports and Communication Dictionaries

Communication passports,

communication dictionaries, and

About Me books are all ways of

documenting a person’s

communication needs and other

important information about

them.

For detailed instructions on

creating a communication

passport, see:

http://

www.communicationpassports.o

rg.uk/Home/

Multimedia Profiling

A person with disability works

with supporters to develop a

multimedia profile about

themselves using video, audio,

and pictures. There are several

MMP apps for mobile devices.

For a blog post on MMP, see:

https://

www.communicationaccessnetw

ork.com/uncategorized/multi-

media-profiling-getting-to-know-

me/

Patient-Provider Communication Hub

An online information hub about

complex patient-provider

communication. Website

features case studies, training

materials, and free resources for

use in healthcare contexts.

www.patientprovidercommunicat

ion.org

InterAACtion manual and DVD

A set of resources, checklists,

and training materials to get you

started in communicating with

those who have CCSN.

Purchase a copy of

InterAACtion here:

http://www.scopeaust.org.au/sh

op/interaaction-manual-dvd-

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Resource Description Links to Further Informationpack/

This Youtube video explains

more about this set of

resources:

https://www.youtube.com/

watch?v=MQQG6zPiNFA

Listening to those rarely heard

An approach to supported

decision-making for people who

do not communicate formally.

This resource suite provides

tested materials that can be

used to facilitate best practice in

supported decision-making.

Watch a section of the training

video here:

https://vimeo.com/21176882

Purchase a copy of the

resources here:

http://www.scopeaust.org.au/

shop/listening-rarely-heard-

guide-supporters/

Good Things

This video demonstrates how

good communication contributes

to full, rich and meaningful lives

for adults with intellectual

disability living in a group home.

This video was made by the

Inner South Communication

Service, Victoria.

https://www.youtube.com/

watch?v=PljrI54od6A

*All communication checklists should be completed by one or more supporters who

know the person well. It is helpful to involve a speech pathologist to interpret what

the results mean.

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References

1. M. M. Smith and I. Connolly, Disability and rehabilitation. Assistive

technology, 2008, 3, 260-273.

2. S. Forster and T. Iacono, Journal of Intellectual & Developmental Disability,

2008, 33, 137-147.

3. H. Paterson and C. Carpenter, Disability and Rehabilitation, 2015, 37, 1522-

1530.

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Developmental Disability, 2012, 37, 324-336.

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O’Hare, Understanding communication access on V/Line trains: Perspectives

of staff and customers. , Melbourne, 2014.

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10. J. Law, A. van der Gaag, B. Hardcastle, J. Beck, A. MacGregor and C.

Plunkett, Communication Support Needs: a Review of the Literature, Scottish

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Communication, 2013, 22, 4-15.

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13, 411-421.

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2013, 34, 162-171.

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Education, 2015, 30, 367-383.

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Intellectual Disability Research, 2014, 58, 721-733.

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(2013), 2013, 45.

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23

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.

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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

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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.

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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

27

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 resourcesThis 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

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29

Practitioner Cards

Communication: First Principles

Introduction

Communication is a human right. Communication allows us to:

Express our thoughts and feelings

Convey our wishes and preferences

Share information about ourselves and our interests

Understand what is happening to us and around us

Get to know other people

Effective communication partners can make a huge difference to a person’s

participation, wellbeing, and quality of life.

Some of the most successful communication support strategies can be non-intuitive

or challenging for partners to use at first. They may also require some practice.

Did you know? 44% of disability service users receive some degree of

communication assistance from paid staff1.

About this Practitioner Guide

This resource series is based on the findings of international research, conducted by

and with people who have severe communication disability. It is designed to help

practitioners (e.g. support workers, support planners, and other personnel) to refine

their communication partner abilities. The set contains eight cards covering key

principles for being an effective communication partner.

“If you relate to him as well and relate sincerely, that builds a relationship and he

connects with you.”

Support Worker for a client with severe intellectual disability2

You can use these resource cards to:

Learn new communication partner skills

30

Refresh or check your existing skills

Train or support other communication partners

Talk to a person with communication disability about the supports or strategies

that they prefer

Not every technique on these cards will be appropriate for everyone you support. Different people prefer different strategies. It’s important to talk to each

person, their family/support network, and any relevant professionals (e.g. a speech

pathologist) to work out the right type and level of support for them.

You can learn more about each of these principles and related resources in our

Research to Action Guide www.cadr.org.au/about-cadr/research-to-action-guides .

31

Communication: First Principles

Practitioner Guide Principle 1: Respectful, Responsive, and Reciprocal Interactions

These three “R’s” of communication are extremely important when interacting with

someone who has communication disability.

“…they see my husband as being my carer and they always talk to him … they

think I can’t understand, but I can.”

Respect means recognising that someone with communication disability has

valuable contributions to make. Being responsive means recognising someone’s

communication attempts, interpreting and responding to these appropriately.

You can create respectful and responsive interactions by:

Addressing the person with communication disability directly, instead of via

their carer or support person.

Learning about a person’s unique communication methods and how to

interpret these. People with severe disability may use very subtle

communication; for instance changes in breathing, eye-gaze, or facial

expressions can say a lot about the way a person is feeling.

Providing opportunities to talk about a full and age-appropriate range of

subjects, including topics such as work, leisure, culture, and sexuality, all of

which can be important to people with disability.

Taking time to realise and acknowledge a person’s uniqueness - for instance,

their quirky or admirable character traits.

Reciprocity means sharing an interaction. In reciprocal interactions, a person with

communication disability has ample opportunities to contribute and to be heard.

Reciprocity is the foundation of success in most social relationships.

Partners can promote reciprocity by:

Sharing moments of banter, laughter, and smiles, or collaborating in activities.

32

Recognising and respecting a person’s topic interests. For people with

severe disability this might be activities they seem to enjoy, or something they’re

looking at.

Pausing for at last 10 seconds to allow the person to initiate or respond.

Taking the time to persevere with an interaction or topic, even when

communication breakdown has occurred.

“It feels really nice that someone . . . someone that just wants to speak with you!

One feels like a human being. It feels ‘Wow!’”

Recognising people with communication disability as unique and capable individuals,

and being mindful of these three R’s in your interactions, is crucial for the meaningful

social inclusion of people with communication disability.

For more information on being a good communication partner and other topics, go to

www.cadr.org.au/about-cadr/research-to-action-guides .

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Communication: First Principles

Practitioner Guide Principle 2: Comprehension Supports

Some people with communication disability have difficulty understanding written and

spoken language. This can affect their ability to:

Follow instructions and conversation

Understand and learn new information

Make informed decisions

“With Sandra you always speak a bit slower because there’s no point racing

through something. Even if she understands, it takes a little while to process it”

Family Member1

As a communication partner, you can make your spoken language easier to

understand by:

Speaking clearly and at a moderate pace – Yelling and making your speech very

slow or exaggerated actually makes you harder to understand! Adopting plain language by using shorter sentences and choosing words the person is likely to be

familiar with. Plain language should be respectful and age-appropriate. It is not the

same as “baby talk”.

“Then she wrote! Keywords like this. – – –

She wrote for me, you see. – – –

That was damn good, and then I understood at once!”

You can also supplement your speech with other communication modes, for

example:

Writing Pointing at letters, words or pictures on a person’s communication book,

board, or device Using meaningful photographs as a conversation prop (e.g. photos, a past

event, or a place they visit)

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Highlighting key words in sentences with gesture or sign language (a technique

known as Key Word Sign)

Using ‘Easy English’ written resources. These combine simple text with

meaningful pictures or photos, and can help to structure complex discussions.

People with profound intellectual disability are unlikely to understand words, pictures,

or text. The following cues may help them make sense of what is happening:

Using touch and tone of voice (e.g. a bright tone of voice and a gentle shoulder

rub might help someone to wake up and become more alert)

Using familiar objects, smells and sounds (e.g. the feeling of a washcloth, the

smell of shampoo, and the sound of running water might alert the person to bath

time)

Providing hand-over-hand guidance to help the person complete tasks (e.g.

participate in cooking or washing themselves) and to explore objects around

them

Where possible, engage a person in regular and consistent routines

For more information on being a good communication partner and other topics, go to

www.cadr.org.au/about-cadr/research-to-action-guides .

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Communication: First Principles

Practitioner Guide Principle 3: Supporting Expression

A person with communication difficulty may have difficulty expressing themselves if they:

Have unclear speech, or become easily tired while talking Have difficulty finding the right words to say, or get their words muddled up Have difficulty making clear sentences or saying things in order Speak English as a second language

Use a communication book, board, or other device, which can slow down their

message generation

“Sometimes people ignore me; they are surprised I can speak.”

Person with communication disability1

For some people, it may be helpful when communication partners structure the

interaction and provide prompts. For instance:

Asking yes/no questions (e.g. “Do you want some tea?”) can allow the person to

give a quick and easy response. It is important to make sure the person can

understand a yes/no question before you rely on these.

Providing closed choices (e.g. “Do you want black or white tea?”) can assist

people who have difficulty finding the right word.

Asking open-ended or clarifying questions (e.g. “Are you trying to tell me how

you would like your tea made?”) can help to establish the person’s main message

and avoid misunderstandings. They can also help to keep a person on track in the

conversation.

What helps my communication?

“People stay when I am talking to them”

“Getting the [listener] to stop work and sit down”

While helpful in some instances, overuse of these strategies can limit the freedom of people with communication disability to direct an interaction. They

should therefore be employed with caution, and with regard to the person’s

preferences at the time.

36

In all cases, patience and making time to listen is important. If spoken

communication is very difficult, you can also encourage a person to use additional methods such as pictures, real-objects, gestures, and drawing to get their

message across. It can be useful to have a pen and paper with you at all times.

Just because someone is hard to understand, doesn’t mean they have nothing to say.For more information on being a good communication partner and other topics, go to

www.cadr.org.au/about-cadr/research-to-action-guides .

37

Communication: First Principles

Practitioner Guide Principle 4: Managing Communication Breakdown

While it is important to recognise that all people with communication disability have

something to communicate, it is also important to prevent misinterpretations. This

can be achieved with patience, clarification, and supportive environments.

“If I am going to say something, everyone is gone, you know. Yes, that’s a

problem!”

Person with communication disability20.

PatienceEven though communication might feel awkward or laboured, avoid finishing a person’s words or sentences unless they have indicated that this is helpful to

them.

Pausing is a highly effective communication strategy. Pause for at least 10 seconds after making a statement or asking a question. This allows a person with

communication disability extra time to understand what you have said and generate

their response. It can feel uncomfortable to pause for this long at first – practicing

with a friend and counting in your head can help.

ClarificationSome communication disabilities make comprehension difficult. In these cases (or

when you are unsure), you can check the extent of a person’s comprehension by

asking them questions, asking them to recount something back to you, or repeating

the interaction. If someone’s speech or communication is unclear, you should also

check whether you have understood their message correctly.

38

“Diane said something that was interpreted as chocolate. She was then shown a choice of

objects, the chocolate sauce or the strawberry sauce, and she reached out for the

strawberry.”

Support Worker2

Consulting other familiar communication partners can help to resolve

misunderstandings, especially for people with very complex or severe disabilities.

Supportive environmentsEnvironmental factors can impact on communication success for people with

disability and their partners. Where possible, partners should prioritise the person’s preferred communication modes and settings. This may involve:

Providing options for face-to-face communication. Telephone communication

may be difficult or even impossible for some people. Others may prefer email or

social media interactions due to the slower pace required.

Minimising background noise and unnecessary distractions. This can make

communication easier for everyone.

Being sensitive to other factors that often impact on communication, such as

positioning (e.g. seated versus in bed), or being tired, cold, in pain, unwell, or

under stress.

For more information on being a good communication partner and other topics, go to

www.cadr.org.au/about-cadr/research-to-action-guides .

39

Communication: First Principles

Practitioner Guide Principle 5: Augmentative and Alternative Communication (AAC)

“I don’t think I could live without AAC. I certainly would not be able to study or have

employment in the future … It is an essential part of my life.”

Person who uses AAC1

People with communication disability sometimes use augmentative and alternative communication (AAC) resources to support their comprehension or expression.

Some examples of AAC resources include:

Picture cards

Communication books and boards

Visual timetables or schedules

Electronic devices that produce spoken messages

Key Word Signs and gestures

AAC systems are usually set up with the help of a speech pathologist, following a

detailed assessment. Well-chosen AAC systems can improve communication

success, support independence, and reduce anxiety for everyone involved.

‘‘Using a communication aid is dependent upon another person offering you the

aid and being made aware when you might need it.”

Person who uses AAC2

Here are some key points to remember if you are working with someone who uses

AAC:

Be patient – AAC can be slower than speech.

Ensure the person has access to their AAC whenever possible. Make sure the

person also has a way to request their AAC system when it is not in reach.

Keep AAC devices clean and charged.

Repair systems promptly when required.

AAC systems should be regularly updated as the person’s communication needs

change.

40

Check if the person needs help to access, mount, or manage their device.

Some people may need prompting or encouragement to use their AAC device,

and to bring it with them.

Setting up, maintaining, and using an AAC system takes time and effort. People who

use AAC value partners who are patient and support their use of AAC. A person’s

communication needs are likely to change over time. This means that their AAC

system will need to be updated. The person’s speech pathologist can help with this.

You can also ask for training and support if you are not sure how to use or

maintain a person’s AAC system.

For more information on being a good communication partner and other topics, go to

www.cadr.org.au/about-cadr/research-to-action-guides .

41

Communication: First Principles

Practitioner Guide 6: Enabling a Lifelong Communication Support Framework

Communication can be influenced by:

A person’s hearing and vision. It is important that any prescribed equipment (e.g.

hearing aids, glasses) is available to the person at all times. Any unexpected

changes in someone’s communication warrants a vision and hearing check.

A person’s physical abilities. Limited or dependent mobility can severely affect a

person’s participation in interactions.

Cultural and linguistic background. People with communication disability have

the same right to an interpreter as anyone else if English is not their first

language. Cultural beliefs might influence a person’s preferences regarding who

they interact with and in which contexts.

Limited literacy. Many adults with intellectual disability have limited literacy skills,

impacting on their communication.

Personal values about communication, including grief or embarrassment about

a new or worsening communication disability.

Discrimination based on a person’s cultural, ethnic or religious background,

sexual orientation, or gender.

“My Mom could deal with the loss of the ability to walk and use her hands, but she

was not able to deal with the loss of communication – it would simply make her

cry; this represented her biggest loss in life.”

Carer of a person with ALS1

Managing changing needsA person’s communication needs are likely to evolve across their lifespan. Changes

to their home and family context, communication partners, and daily routines should

be anticipated and addressed. For example:

People with a deteriorating health condition and those who are ageing may

require additional supports as their abilities change. For instance, someone who

42

previously spoke may eventually benefit from some alternative communication

strategies.

People who are acutely unwell may require specialist supports or communication

equipment - for instance, if they are in bed, intubated, or on sedating medication.

Someone who has learned new communication skills (e.g. reading, requesting,

sign language, AAC) may require fewer or different supports.

Clearly and continuously documenting a person’s communication needs helps to observe these changes when they occur. They also support smoother

transitions in care (e.g. from home to hospital setting, or from one staff member to

another).

For more information on being a good communication partner and other topics, go to

www.cadr.org.au/about-cadr/research-to-action-guides.

43

Communication: First Principles

Practitioner Guide 7: Sharing and Documenting Knowledge

“She does talk, she may not verbalise but she definitely talks.”

Long-standing support worker for a person with profound disability 1

If you have been supporting someone for a long time, you have likely established

some strategies for communicating with them. Sharing and documenting these patterns and preferences helps other partners (e.g. new staff, visitors, volunteers,

and community members) to meet the person’s needs more effectively.

Information about someone’s communication support needs is often shared

informally by word-of-mouth. Support workers tend to prefer this method as it allows

them to teach/learn about a person on the job, under a supportive mentor-style

relationship. However, this can be harder when staff are working alone, off-site (e.g.

for home visits), or when an experienced staff member is unavailable to assist.

Communication support needs can be formally documented in a number of ways. A

personal communication dictionary (PCD) can help partners to accurately

interpret the person’s behaviour. For instance, an entry for Samantha, an adult with

intellectual disability, might be:

Behaviour What this might mean How best to respondSamantha slaps the table

with her palms and

squeals.

Samantha is excited

about

something/someone that

she can see.

Follow Samantha’s eyes

to what she is looking at,

or help her make a

request on her choice

board.

An ‘About Me’ book or communication passport provides information about a

person’s background, interests, preferences, health, and life that they might be

unable to express to new partners on their own. Samantha’s About Me book might

include information about her family, her dietary requirements, and how she likes to

44

be dressed. This same information can be presented digitally in the form of a

multimedia profile. A multimedia profile contains digital files such as photos and

video that communicate important areas of a person’s life.

People with disability can carry a wallet-sized card to support their communication

when out in the community. This might include a brief introduction (e.g. “Hi, my name

is Samantha. I use my eyes and hands to communicate”), followed by some

strategies that new communication partners might find helpful (e.g. “Please speak to

me in short sentences. You can use my communication board to ask me

questions.”).

A person with communication disability might work with their family or support staff to

construct these sorts of resources. This can be a positive experience for all involved!

More information about PCDs, communication passports, and checklist tools, go to

our Research to Action Guide at www.cadr.org.au/about-cadr/research-to-action-

guides. For references, info@cadr.org.au.

45

Communication: First Principles

Practitioner Guide: Summary Sheet

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

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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.

For more information on being a good communication partner and other topics, go to

www.cadr.org.au/about-cadr/research-to-action-guides.

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