Communication that supports effective partnerships

Consumers receive the information they need in a way that is appropriate for them.

Review communication mechanisms

Develop a framework for inclusive communication that takes into consideration the diversity of people with intellectual disability who access health care in the organisation. 

Determine whether the organisation’s current communication mechanisms meet the needs of people with intellectual disability by reviewing:

• Information developed by the organisation, such as patient brochures, posters and consent forms, to see whether they are available:
• In a variety of community languages
• In a variety of accessible formats, such as audio or Easy Read
• The cultural competency and confidence of the workforce in communicating with diverse patient populations. 

Use augmentative and alternative communication

Two methods that can assist communication are augmentative and alternative communication (AAC).^[59] See the Speech Pathology Australia AAC fact sheet for further information.

Augmentative communication is when something is added to speech to make it clearer for the audience. This can include using signs or pictures to clarify what is being said, for example, in the form of a supplemental Easy Read document.²

Alternative communication is when a different communication method is provided for someone who is unable to speak, or if the listeners do not understand speech. AAC encompasses a wide range of methods, from sign language and picture boards to mobile device apps and dedicated speech-generating devices. These methods, systems, tools and strategies can be used when a person uses something other than speech to communicate.⁵⁹

Organisational policies should aim for early identification of communication difficulties and the use of AAC during a hospital admission to ensure safe health care. See the ‘Comprehensive Care Standard’ section in this User Guide for more on including communication needs in a person’s comprehensive care plan.

Use existing networks to support communication with people with intellectual disability 

Provide access to key contacts who can support the clinician’s use of accessible communication strategies, including speech pathologists, the National Relay Service (NRS) and the Translating and Interpreting Service.

Network with other organisations or individuals in the community to share knowledge about communication preferences and needs. Networks may include culturally and linguistically diverse community groups; NDIS behaviour support clinicians; Primary Health Networks; Local Hospital Networks; local, state and territory government organisations; and professional associations. 

Training for effective communication between clinicians and people with intellectual disability

People with intellectual disability are often not included directly in the discussions about their health.^41,54,[60] 

It is important for clinician training to incorporate the requirement to include people with an intellectual disability in discussions about their health care.

Education and training for clinicians should include the appropriate use of Easy Read and AAC, and other reasonable adjustments for communication. 

• Speech Pathology Australia Communications Hub
• Mater EASY-Health – Easy Access for Everyone
• NDIS Quality and Safeguards Commission NDIS practice standards
• Agency for Clinical Innovation Guiding principles of quality health services for people with intellectual disability (an Easy Read version is available: 10 things we believe about good health services for people with intellectual disability)
• Teach-back – a simple yet effective communication tool used to check understanding, developed by South Eastern Sydney Local Health District and the Institute for Health Transformation at Deakin University
• World Health Organization information and fact sheets on Disability
• NSW Health Responding to Needs of People with Disability during Hospitalisation Policy Directive requiring the development of a pre-admission plan for people with disability
• The Australian Network on Disability – a national not-for-profit that helps organisations engage with people with disability^[i]
• University of NSW Department of Developmental Disability Neuropsychiatry Easy Read resources on mental health services – information for people with intellectual disability and for health professionals
• NSW Council for Intellectual Disability Just Include Me online training, which supports health professionals to learn more about resources and tools, and to promote inclusion in health care for people with intellectual disability.

Consumers receive the information they need to get the best health outcomes, and this information is easy to understand and act on.

Provide access to appropriate information resources and tools to support communication with people who have intellectual disability

Provide clinicians with resources for effective communication, including Easy Read documents when needed. 

Include accessible information on the organisation’s website, such as information about coming to hospital; resources and visual aids; and information to support people with intellectual disability to seek help and assistance. 

Set up an environment that supports open, clear and effective communication with people with intellectual disability, their families and supporters

This may involve:

• Engaging leadership and governing bodies to integrate the importance of health literacy and clear communication into the organisation’s operations
• Aligning communication with other organisational priorities, such as reducing preventable hospitalisations, hospital-acquired complications and early mortality^[62]
• Providing clinicians with training that highlights the importance of health literacy for the person with intellectual disability, and the use of tools such as Easy Read to provide information
• Implementing a plain-language policy that makes written information easier to understand
• Providing information on the organisation’s website for families and supporters, for instance details about visiting hours, exemptions for essential carers, complaints processes and healthcare rights.

• Say less show more – a NSW Agency for Clinical Innovation communication initiative that provides information through a series of simple photo stories
• NSW Council for Intellectual Disability Easy Read Resources
• NSW Council for Intellectual Disability My Health Cards health conversation cards
• My Health My Communication
• Eastern Health Cue Cards in Community Languages – cue cards and symbols to support communication with people who do not understand English 
• Inclusion Australia Easy Read Resources
• National Health Service England Easy read information
• Australian Commission on Safety and Quality in Health Care About healthcare rights for people with cognitive impairment – Easy English Guide 
• Australian Commission on Safety and Quality in Health Care Health Literacy: Taking action to improve safety and quality
• Inclusion Melbourne Your Dental Health.

A range of communication resources are available for health services collaborating with people with intellectual disability:

Communication

• Speech Pathology Australia fact sheets (with Easy Read) 
• The National Relay Service allows communication with another person via a third-party hearing person, even if the person accessing the NRS cannot hear or use their voice.

Informing care in hospital

• Julian’s Key Health Passport is a consumer-controlled communication tool to assist people with disability to communicate their disability support and healthcare needs to Queensland Health staff. It is available in a fillable PDF or paper-based format. 
• My Health Matters is an Easy Read folder that people with intellectual disability can create to improve communication with their healthcare providers.
• The Admission 2 Discharge (A2D) Together Folder, created in a partnership between the South Eastern Sydney Local Health District Carer Program and the Metro-Regional Intellectual Disability Network. The folder facilitates timely transfer of relevant and current information to enable hospital staff to meet the needs of people with intellectual disability in hospital.
• SA Health My Health Information is a resource to support people with intellectual disability to communicate their needs and preferences to healthcare staff while in hospital.
• Western Australian Department of Health Hospital Stay Guidelines, which aim to inform people with disability and their support networks, disability service providers and hospital staff of their respective roles.
• Central Coast Local Health District TOP 5, which invites carers to share up to five essential strategies or care tips that would assist staff in supporting the patient or client during their everyday life or during hospital admission. This information is written on a TOP 5 form to guide the person’s care.

Providing healthcare information 

• NSW Agency for Clinical Innovation Circle of Support videos show how health outcomes for people with intellectual disability can be improved if fear, anxiety or mental health concerns are preventing them from getting the medical help they need. Captioned versions of the videos are also available.
• NSW Council for Intellectual Disability Health guides in Easy Read support people with intellectual disability.
• North Metropolitan Health Service – Mental Health, Public Health and Dental Services ‘Maggie goes to the dentist’ social story helps prepare people for the experience of going to the dentist.
• NSW Health COVID-19 Easy Read resources are a range of accessible resources about COVID-19 for people with disability. The videos and Easy Read fact sheets were developed in collaboration with the NSW Council for Intellectual Disability. 
• Books Beyond Words creates award-winning wordless picture stories covering topics including physical and mental health. Each story is co-created with and for people who find pictures easier to understand than words.