Deafblind Awareness

Deafblind Australia would like to pay respects to elders past, present and emerging. Welcome. This resource, created by Deafblind Australia (DBA), is designed for anyone who is interested in learning about deafblindness; what it means; how it affects people and how we can all communicate more effectively.

This resource is unique because it has been created with input and feedback from deafblind people. Unlike many other resources which are often developed by hearing people without lived experience, this resource has been shaped directly with feedback from our DBA reference group.

For more in depth learning interactive sessions and workshops, you can contact DBA for professional training. We want to thank the Department of Health disability and ageing for funding this free resource.

Deafblindness is a unique and isolating sensory disability caused by the combination of both hearing and vision loss. It can significantly affect communication, mobility and daily life.

The term deafblind includes people who have some hearing and vision, as well as those who are completely deaf and blind. It’s difficult to know the exact number of people with deafblindness in Australia because experiences vary widely.

Based on data from the survey of Disability, Ageing and Carers, 2018, around 200,000 people are thought to be deafblind though this number is likely an underestimate. Many people with dual sensory loss don’t identify as deafblind and the survey doesn’t include remote regions where sensory loss is often higher.

Among First Nations communities, the deafblind community is very diverse. People have different levels of hearing and vision, come from many cultures and may have multiple or complex disabilities.

Causes of Deafblindness

Deafblindness can be caused by a range of factors that affect both hearing and vision and understanding these causes helps us better support people who are born with or later develop deafblindness.

Congenital deafblindness

Congenital deafblindness means a person is born with both hearing and vision loss. Some common causes include premature birth, Usher syndrome type 1, Charge syndrome, Norris disease, genetic conditions, rubella.

Acquired deafblindness

Acquired deafblindness develops after birth, in childhood, teenagers or adulthood.

Some causes include accidents or injuries, Usher syndrome types 2 or 3, brain or eye tumours, Neurofibromatosis, age related conditions like glaucoma or Retinitis Pigmentosa (RP) and lifestyle factors.

Auslan, Australian Sign Language, can look different for people who are deafblind.

There’s no single version; it depends on each person’s vision, experience, and preference, and where they are from.

Some people use home signs or adapted versions of Auslan.

Others combine Auslan with touch-based communication methods, here are some different ways to communicate with someone who is deafblind.

• Visual frame: Signs are kept within a smaller, visible space.
• Tracking: The person lightly holds the signer’s wrists to follow movement — useful when vision is limited.
• Tactile hand-over-hand signing: The person places their hands directly over the signer’s hands to feel the shape and motion of each sign.
• Tactile fingerspelling: Letters are spelled into the palm.
• Haptics: Touch signals on the back or shoulder give extra information, like emotions or what’s happening around them.

For example, a haptic guide might signal: “Everyone’s laughing,” or “Slow down a little.”

Some deafblind people do not use Auslan, or have not learnt Auslan yet.  They may have a different way of communication, such as speech (chuchotage), print on palm, braille, haptics.

Each deafblind person has their own way of communicating. The key is to respect their choices and use the strategies that help them connect best.

Interpreters

Interpreters work between Auslan and English — ensuring both languages and cultures are understood.

They are accredited through NAATI and follow a professional Code of Ethics. Their job is to facilitate communication, not to influence it.

Communication Guides (Commguides) 

Commguides provide guiding and transport support, such as helping with shopping or appointments. They also help deafblind people stay informed, safe, and confident in their daily life.

Their goal is to empower independence — helping people make their own choices and understand their environment.

Both roles are essential — they simply serve different purposes.

Impacts of deafblindness

When people think about deafblindness, they often imagine hearing and vision loss — but one of the biggest challenges is actually lack of access to information.

Imagine being at a train station — signs are small, the font is unclear, and there’s no Auslan video. For many deafblind people, Auslan is their main language, not English. If information is only in English, audio, or small print, it becomes difficult to access.

It’s not just about having information — it’s about making sure it’s accessible. Deafblindness can also affect independence.

Some people need more support over time, while others manage with training, tools, and a strong support network. Mental health can also be impacted.

When communication becomes harder, people may feel anxious, isolated, or lose confidence. Relationships can change — not because people stop caring, but because it’s hard to know how to connect.

How to approach

Always approach from the front, within the person’s line of sight. Never come from behind or the side. Because every deafblind person is different, it’s best to ask them how they like to be approached.

A few suggestions you might try:

• Sign to them when you approach,
• Speak and sign at the same time, or
• Gently touch their shoulder to get their attention

 Introducing yourself

Once you have their attention, clearly introduce yourself by name. Be patient and give them time.

Check preferences

Always ask: “How do you prefer me to communicate?” or “How can I best support you?” Respecting preferences builds trust and helps ensure clear communication.

For better understanding on how to guide a deafblind person, and each deafblind person’s preferences, it’s best to learn in person.

Lighting and positioning

• Make sure there’s good lighting.
• Avoid standing in front of a bright window — it makes you appear as a shadow.
• A plain background, especially a darker one, helps your signs and expressions be seen clearly.
• Wear a dark, plain coloured top without big logos or patterns.

Signing and communication pace

• Avoid signing or talking too fast.
• Everyone communicates differently — observe their pace and match it.
• If they look unsure, slow down and check in.

Sharing information about the environment

 Describe what’s happening around you — things sighted or hearing people pick up naturally.

Examples:

• “The waitress is coming over.”
• “A man just walked in.”
• “It’s raining outside.”

These details help a deafblind person feel informed, aware, and included.

Avoiding interruptions

Try to avoid interruptions while communicating. If someone does interrupt, explain what’s happening so the deafblind person isn’t left confused.

Example: “Hang on — my boss just needs a quick word.”

Give your full attention when communicating. Stay present, be clear, and share what’s happening around you.

Respect and awareness make a huge difference.

Every deafblind person’s experience is different. Each person experiences the world in their own way. So when you meet someone who is deafblind, remember: there is no one-size-fits-all. Always ask and respect their individual communication and access needs.

For more in-depth learning, interactive sessions, and workshops, you can contact DBA for professional training.

Further resources

For more information or support, contact:

Deafblind Australia
🌐 www.deafblind.org.au
📧 [email protected]

Deafblind Information Australia
🌐 www.deafblindinformation.org.au

In Alice Springs, a 2023 snapshot showed just how urgent the situation is. Many people with deafblindness, including Aboriginal people, aren’t being identified. They’re missing out on services because the system doesn’t see or understand their needs. There are no Auslan interpreters in the Northern Territory. Services rely on workers flying in, which means delays or no access at all. In prisons, people may be part of legal hearings over the phone with no way to understand what’s happening. Aboriginal children are especially affected. Over 80% of children living on country have untreated hearing loss, but there’s little or no access to care that respects their culture, including help with Aboriginal sign languages. 

People who are deafblind face barriers every day. Some don’t have power to charge phones or tablets. There’s no internet and no safe or private place to sleep. Without support, even getting to a health or Centrelink appointment can be impossible. This work crosses many areas—health, disability, education, justice and housing. It shows the need for systems that recognise deafblindness early and provide the right support in the right way.

Deafblind Australia is excited to be partnering with the University of Western Sydney, where an Occupational Therapy Honours student has put forward an Honours proposal analysing data collected firsthand from deafblind people from all around Australia. The purpose of this study is to explore experiences and challenges encountered by the deafblind population with existing support systems. This paper aims to explore the specific support needs of the deafblind population to inform necessary change to enable valuable participation in society.

In Australia there are approximately 100,000 people who are deafblind, scattered about. Their lives can vary greatly and many face unique challenges every day. Barriers can include difficulty with transport, mobility, and communication, which often leads to reduced social interaction. In the past, access to services and inclusion was much harder. With the rise in technology, things have changed. Technology, like mobile phones, SMS, Skype, and video calling, has improved things. And deafblind people have benefited. Technology is essential. With access to SMS and other applications, it helps with booking appointments, staying connected, and navigating daily life.

Deafblind people often embrace new technology because it gives them more control and access, similar to the way hearing people use it. But for them, it’s essential. If you work in retail or customer service, you may meet a deafblind person. When you do interact with a deafblind person, here are three tips to help you provide good service.

Deafblindness is its own disability. Different from deafness and blindness. The deafblind community contains lots of different types of individuals. People can have problems with their vision and hearing at any time of their life for lots of different reasons. Because there are many types of deafblind individuals, a lot of people, like doctors or support workers, don’t get enough training to understand deafblindness. 

This video is provided to make sure that Deafblind people are included in events. Deafblind individuals have their own preferences for communication that vary from person to person. These guidelines are important to ensure inclusion in workshops, meetings, and conferences, and to help events run smoothly for deafblind attendees.

For a deafblind person, it’s best to ask about their needs before the meeting or workshop. Consult with them to organise things and ensure they feel included in the event. On the event day, check in with the deafblind person to make sure they are comfortable and see if any changes are needed. This can be done during a break to make necessary adjustments for their inclusion.

It’s important to keep in mind that deafblind people can experience fatigue quickly—physically, such as sore shoulders and hands from communicating, and mentally, including tired eyes and general exhaustion. A maximum session should be no longer than three hours.

Deafblind people also appreciate being close to public transport such as trams or buses for easy access to events. When planning and scheduling events, deafblind people often prefer a mid-morning start and prefer that the event does not run too late into the night, as darkness can affect their vision. Ideally, events should end by 2 or 3 p.m.

About one month prior to the workshop, when contacting deafblind people about their communication needs, inquire whether they require notetakers, visual frame signing or interpreting setups, or any auditory needs. Ask if they require a hearing loop or materials in Braille. It is essential to consider these needs and make adjustments before the event.

When asking a deafblind person if they need an interpreter, be sure to ask who their preferred interpreter is. If that interpreter is unavailable, let them know. When booking interpreters through an organisation, inform the organisation of the specific needs of the deafblind person. For example, interpreters should wear clothing that contrasts with their skin tone. If an interpreter has dark skin, wearing white clothing creates contrast, which makes signing easier to see.

It is also essential to book two interpreters—whether for hand-over-hand or visual frame communication. One interpreter is not enough due to the constant demand of supporting a deafblind person. Also, ensure that a table with a soft cushion is provided for the deafblind person to rest their elbows on. The deafblind person sits on one side and the interpreter on the other. This setup reduces strain on both individuals’ shoulders.

For deafblind people using a hearing loop, confirm that the function room has the infrastructure to connect their hearing device. If possible, provide printed materials from the event, such as presentation notes or training documents. Deafblind people cannot use PowerPoint presentations.

Make sure the event space has good quality lighting. Avoid glare from windows or reflections on floors. When the presenter is standing, a dark or contrasting background should be behind them. If necessary, close the blinds to reduce glare and make the environment more visually accessible.

If the deafblind person needs assistance throughout the event, whether from a support worker or volunteer, remember that the support person may also need breaks. During workshops, do not rely on PowerPoint presentations, and keep language simple and clear. Interpreters should switch every 15 minutes.

When scheduling break times, ask the deafblind person or their interpreters whether they need a longer break, typically between 45 minutes and 1 hour. For short breaks, it is better if the deafblind person and their commguide or interpreter stay in place rather than moving around. This avoids extended breaks and helps keep the event on schedule.

In a conference or audience setting, the presenter should speak clearly and ensure interpreters have time to keep up with what is being said. The presenter may need to pause between thoughts and check for understanding or questions before continuing.

Deafblindness is its own disability. Different from deafness and dlindness. The deafblind community contains lots of different types of individuals. People can have problems with their vision and hearing at any time of their life for lots of different reasons. Because there are many types of deafblind individuals, a lot of people, like doctors or support workers, don’t get enough training to understand deafblindness. 

Access to information is crucial for people to feel truly engaged and connected to their community. By following the checklist below, you will ensure that the information in your documents or posted to your online platforms is accessible to the broadest cross-section of readers possible. Deafblind Australia asserts that these steps are essential in ensuring digital spaces—such as websites and other online service portals—are accessible to users who may be using additional accessibility software or hardware.

Consider accessibility throughout your design process and engage members of the deafblind community for feedback. Ensure all content is laid out logically and can be navigated with a keyboard. Use a site map and an A to Z index for an alternative search method. Use alternative text for images. This means typing in what is actually seen in the picture—such as hair color, facial expressions, or clothing. This helps the user identify who is in the picture based on the description in the alt text.

Use sufficient colour contrast between text and backgrounds. For example, if text on screen is in purple, deafblind people may not be able to see it. It should be changed to a black background with white or yellow text to make it more accessible. You could also provide the option to adjust contrast from light to dark, giving users the ability to choose what works best for them.

Use descriptive links. A deafblind person may not know what a generic link is for. Instead of simply listing “Click here,” describe the link’s purpose. For example: “This is for interpreting,” “This is for Commguides,” or “This is for deafblind associations.” Clear descriptions help users choose the appropriate link and make navigation easier—especially for Braille users—saving time and reducing confusion.

Place links after the main body of text in bold, high-contrast fonts rather than embedding them within paragraphs. Braille users may otherwise miss that additional content follows the link. Listing all the links after the content makes the document or page much more accessible and easier to follow.

When using videos on your website, always include both a written transcript and captions large enough to be seen easily. Have your website tested for accessibility by deafblind technology consultants, who can provide valuable feedback and suggest adjustments.

Offer large print and Braille options whenever possible. Avoid using scanned photocopies, PDFs, or additional text boxes, which can be difficult or impossible to access with screen readers or Braille devices. When possible, provide text in a Word document format.

These considerations are essential for giving deafblind users full access to your site. When designing a website, aim to include not only English but also Auslan videos. For website complaints, it is imperative that a video option is available for people who are deaf or deafblind to sign their complaint in video format. Many may not be able to type their complaint in English. This option makes it much easier for them to submit feedback.

Deafblindness is its own disability. Different from Deafness and Blindness. The Deafblind community contains lots of different types of individuals. People can have problems with their vision and hearing at any time of their life for lots of different reasons. Because there are many types of Deafblind individuals, a lot of people, like doctors or support workers, don’t get enough training to understand deafblindness. 

Deafblind people experience barriers in their lives every day. This is sometimes called “lived experience.” Many deafblind people also have good ideas about how to take away barriers and make the world more accessible. When government or businesses need advice on things they don’t understand, they will pay experts to come and give them advice. 

But when they want to know about disability, they want people to come and give their opinions for free. This is wrong and it needs to change. DBA believes that deafblind people giving advice should be paid the same as experts from other areas when they do this type of work.

Deafblindness is its own disability. Different from Deafness and Blindness. It can make it hard to communicate with people and do everyday activities. It’s hard for deafblind people to find the services they need.

Many deafblind people feel like they never really fit in anywhere. And this can be deflating. They feel like people don’t think about their needs when they decide things.

One way to help Deafblind people feel less hidden is by using them in videos. Seeing people like you in videos or on TV is sometimes called “representation”. This can be a good way to make people more aware of deafblind community.

It also helps deafblind people feel like they are more included.DBA strongly believes that government and businesses should include more deafblind people when making videos.

This will help deafblind people feel more seen and feel that people want to work with them instead of do things for them. Deafblind Australia can support you to get in touch with deafblind people in your area.

Please contact us if you are planning to make any videos for or about deafblind people.

Deafblind Australia (DBA) wants to ensure that all deafblind community members are aware that they can list deafblind as their primary disability in their NDIS plan through an ILC grant with the National Disability Insurance Agency. DBA have conducted a national reference group of 16 deafblind Australians in July 2020 and discovered the majority of participants were not permitted to list deafblindness as their primary disability on their NDIS plans in the past the NDIA have required deafblind participants to identify as either deaf or blind as their primary disability we know deafblind is its own disability as it’s recognised nationally and internationally in the UN Convention on the rights of people with disability DBA confirms the NDIA has identified deafblindness as a primary disability in section 24 list a #8 of the NDIS act this means if you have not already done so you will be able to list deafblindness as your primary disability on your plan if there’s any confusion you can reference this section of the NDIS act an NDA website or seek advocacy support from DBA or your state or territory advocacy organisation recognising deafblindness as a singular disability is crucial in acknowledging the dual sensory loss is not deaf plus blind not one disability plus one other disability but is in fact one disability that has a significant effect on communication socialisation mobility and daily living the ability to self-identify in this way is also fundamental to respecting the cultural identification of many members of the deafblind community.

It is DBA’s strong belief that Deafblindness is not a combination of Deafness and Blindness, but rather its own distinct disability. That is why it is named “Deafblindness” as a unique disability.

This disability impacts communication, social settings, mobility, everyday life, and function — and the impact is significant. We ask everyone to accept and respect that Deafblindness is its own disability, with its own culture and identity.

When the NDIS was established, policies recognising the identity of Deafblind people were included. However, NDIA staff often have limited knowledge about the Deafblind community, and so they are referred to existing policies. Evidence of this can be found in the NDIA Act — Section 24, List A, Number 8.

When NDIA staff are unfamiliar with Deafblindness, there is written evidence in this document to support its recognition. So, remind them of that.

It remains DBA’s firm position that Deafblindness is not simply the sum of two conditions but is a distinct disability. Individuals have the right to identify as Deafblind if they choose. And if a person is diagnosed as Deafblind, they are entitled to contact an organisation to receive support and access — regardless of whether they personally identify as Deafblind or not.