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Deafblind Disability Snapshot
This Disability Snapshot provides general information about deafblindness to assist you in communicating effectively and supporting the participant to develop their goals in a planning meeting. Each person is an individual and will have their own needs, preferences and experiences that will impact on the planning process. This information has been prepared for NDIA staff and partners and is not intended for external distribution.
Peak body consulted
In developing this resource we consulted with the peak body representing people with this disability, Deafblind Australia.
What is deafblindness?
Deafblind is a term used when a person has a combination of both impaired vision and hearing. Dual sensory loss or dual sensory impairment are other terms used to describe deafblindness.
Deafblindness is described as a unique and isolating sensory disability having both hearing and vision loss or impairment. The disability can have a significant effect on communication, socialising, connecting with others, mobility and daily living (Deafblind Australia, 2004).
A person with deafblindness may strongly identify with the blind culture or the deaf culture (or in some cases, neither) as well as the culture of their family. An understanding of the complexity of each person’s culture is important to respectfully establish communication, language and learning.
How many people are deafblind?
Studies have reported 0.2% to 3.3% of the population may be deafblind. In Australia nearly 100,000 people are reported to be deafblind and two-thirds of
these people are over the age of 65 years. One study reported 36% of individuals over the age of 85 years are deafblind.
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Types of deafblindness
Congenital deafblindness is a term used when a person is born deafblind or when their combined hearing and vision impairment exists before any form of language or communication has developed. Congenital deafblindness can occur due to:
hereditary or genetic conditions infection contracted by the mother during pregnancy disease infection or injury that affects a child early in their development.
Acquired deafblindness is a term used when a person:
is born deaf or hard of hearing and later in life experience a deterioration in their
vision has deafness or hearing impairment at birth and has vision impairment later in life is born with a vision impairment or blindness and has hearing loss later in life has vision and hearing that deteriorates at a later stage in their life through accident,
injury or disease experiences deafblindness through the ageing process.
What are the characteristics of deafblindness?
A small number of people will have no sight and no hearing. Other people who are deafblind will have varying degrees of vision impairment and
of hearing impairment. Experiences and understanding of their world will be different depending on whether
a person was born deafblind or if they acquired vision and hearing loss through
deterioration later in life. Becoming used to new environments and travelling independently and safely are
challenges. Communication is a key challenge for all people with deafblindness. Balance issues may affect some people with deafblindness, particularly those with
Usher Syndrome type 1. These balance issues can affect a person’s mobility.
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Psychosocial impact of deafblindness
The impact of deafblindness on a person’s life will vary. The impact on a person who has a severe vision and hearing impairment can be significant.
Depression, anxiety, frustration, and boredom can occur from the isolation and other challenges experienced by people with deafblindness. A person with this diagnosis may experience low self-esteem and lack of confidence to move about independently and carry out daily tasks.
Communication
People with deafblindness are a very diverse group because of the varying degrees of their vision and hearing impairments. Some people who are deafblind may also have other disabilities. A wide range of communication methods might be used, including:
speech, oral and aural communication (communication using verbal and non-verbal
signals) various forms of sign language including tactile and deafblind fingerspelling
alternative and augmentative communication (adding to communication often
through devices like tactile feeling boards, use of signs and gestures) print and braille.
Do not assume all people who are deafblind communicate in the same way as they may use one primary form of communication or a combination of these. Some people who are deafblind (and people who are blind) use social haptics, a form of communication which involves touch signals on the body.
Because of the wide range of communication methods, it can be difficult for another person to know how to communicate with a person who is deafblind. Many organisations fail to recognise communication needs and preferences for people who are deafblind. This is especially the case when arranging the most appropriate interpreter. Different types of interpreters can be needed, for example tactile or Australian Sign Language (Auslan).
You need to be aware of, and have confidence to ask the person who is deafblind about their communication requirements. A person who is deafblind is often familiar and comfortable in explaining how they prefer to communicate.
Enabling social and economic participation
A person’s support needs for social and economic participation will vary depending on their areas of strength and level of function. It is important to explore how a person with deafblindess can be supported to enable their participation in mainstream activities, education and employment, taking into consideration their interests and aspirations as an individual. This
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may include using supports to assist a person through a vocational ‘discovery’ process to explore their strengths and interests in the context of work. For those who have acquired deafblindess later in life, re-exploring their strengths and interests will be important.
Individual supports can enable participants with deafblindness to build life skills capabilities and greater independence; including in the work place. Volunteering can be a first step in building confidence and connecting to the community and the idea of employment. Peer support from other people with deafblindness can also play a key role in improving social and economic participation.
To maintain work, ongoing support and customisation of work tasks to match the level of function should be considered, along with any needs related to personal care in the work place or assistance with travel. Supports should take into account the degenerative nature of some people’s sensory abilities and mobility. This might require NDIS funding for specialist disability or employment related assessment services as well as access to employment retention and support initiatives such as Work Assist provided through the Disability Employment Services (DES) program. If regular, intensive ongoing support is required to assist a participant with deafblindness maintain meaningful participation in the workplace, supported employment supports could be considered.
Assistive technology or interpretation may also be required to support participation in work.
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How can I tailor a meeting to suit a participant with deafblindness?
Consider the following for face to face communication:
ask the person who is deafblind about their communication requirements and book
the most appropriate interpreter/s. For information on deafblind interpreters refer to
Communication access and supports below face the person and make eye contact identify yourself verbally and/or by signing. Say your name physically touch the person on the shoulder or elbow. The sense of touch is a core
communication means for people who are deafblind. However each person has their
own preference and sensitivity in terms of being touched. Ask each person their
preference.
If the person has a preference for touch as a method of communication, you may find it beneficial to softly touch the back of your hand on the back of the person’s hand or arm to ensure they are aware of you and are ready to communicate.
A lack of response by a person who is deafblind should not be considered as being rude, but rather as a sign of ineffective communication. This would also be the case if a person who is deafblind moves away from the speaker.
Observe the facial expressions of the person who is deafblind – an expression suggesting worry can indicate confusion or unhappiness with the type and effect of the communication.
Conversely, a person who is deafblind might interpret the other person’s message and intentions by the person’s body language. So, friendly and open body language will aid effective communication.
Communication access and supports
People who are deafblind can live independent lives and may travel with CommGuides. CommGuides are specialised support workers that understand the needs of deafblindness. They facilitate independent community participation through communication support and guiding support.
Deafblind interpreters are important to ensure people who are deafblind receive information and communicate effectively in more complex situations such as attending appointments and professional services.
A CommGuide can also be used for communication support during short informal interactions such as at the shops or at the gym. However, for any formal meetings or workshops an
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interpreter should be booked. In many instances two interpreters will be required depending on the length of the meeting and the potential need for tactile signing.
Written communication
Some people who are deafblind have not received appropriate support to access education and may require additional assistance with literacy and numeracy tasks. It is also important to note that for people who are deafblind and have Auslan as their first language, English is a second language.
Plain language should always be used. It should be simple, clear and straight to the point. Explain the context of the communication and keep it focused and relevant. Increase understanding by using examples. Avoid slang, acronyms and bureaucratic language.
Aids and equipment
There are a variety of aids and equipment which many people with deafblindness require to access communication, information and their environment. Common aids and equipment used by people with deafblindness include:
Hearing aids and Cochlear implants Wireless microphones with Blue Tooth (Roger Pens) White mobility canes Seeing eye dogs Home/personal alert systems Magnifiers, such as Zoom text Jaws screen reader Closed circuit televisions Smart phone with accessibility apps (sometimes paired with braille display) Braille devices and displays (Braille watches) Smart watches with accessibility apps including haptics Vibration devices such as ‘Ditto’.
Technology
Technology is very important to people with deafblindness. Technology can assist with communication, social and community engagement, access to information and education, transport assistance (GPS), safety in the home and community and activities of daily living.
The following accessibility considerations may support a person to be able to access content on websites:
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adjustable font sizes contrasting colours accessibility for screen reading software plain language image descriptions – text format screen readers do not pick up images, so picture
description is required.
Helpful links
Deafblind Australia Deafblind Information website
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Version control
Version Amended Brief Description of Change Status Date by
1.1 KHM678 Annual review, information on employment DRAFT 2020-02-06 added.
2.0 CRG656 Class one approval APPROVED 2020-03-13
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