Submission No 11
SUPPORTED DECISION-MAKING IN NSW
Organisation: Deafblind Australia
Date Received: 12 March 2026
Deafblind Australia(DBA) is the national peak representing all Deafblind people and those living with dual sensory loss/impairment.
Deafblindness is a unique and isolating sensory disability resulting from the combination of both hearing and vision loss or impairment that significantly impacts communication, socialization, mobility and daily living.
The term ‘d/Deafblind’ refers to people who have some hearing and vision, as well as people who are completely deaf and blind. Many Deafblind people communicate using Australian Sign Language (Auslan) and/or spoken languages. However, there is an incredibly diverse array of alternative and augmented communication methods used by others including objects, pictures, body language, gesture, key word signs and braille.
It is difficult to accurately state the incidence of deafblindness in the community due to the broadness of the classification and diversity of conditions the term captures. Based on data from the Survey of Disability, Ageing and Carers deep dive 2018 the number is thought to be around 200’000 although this is likely an underestimate. This likelihood is due to the fact that many people with dual sensory impairment do not identify as such and may not report this status and because the SDAC does not cover remote regions and thus does not reflect the high rates of sensory loss/es in First Nations communities.
The Deafblind community is very diverse. Its members have varying degrees of vision and hearing impairment and come from diverse cultural backgrounds. Some live with multiple or complex disability.
We welcome the opportunity to contribute to this inquiry and have responded to Terms of Reference items A, B, C and F below.
a. The lived experience of people seeking access to appropriate support to make decisions for themselves.
- Supported decision-making is an evolving practice not well understood and not widely implemented. Specific techniques and practices of this kind are even further behind in terms of being adapted for use with Deafblind people.
- The practice is frequently undertaken ,when needed, by family members or trusted communication partners that may or may not be engaged in a professional capacity. This creates unique issues for safe-guarding and oversight of practice. DBA’s work on the Disability Royal Commission included stories of family member’s perpetrating violence, abuse, neglect and exploitation when acting in this role.
- People often adopt the role described above out of necessity because they may be one of a very small group of people that can communicate with a specific Deafblind person. They frequently have no training or qualifications in supported decision-making as a formal practice however they possess essential communication skills and an associated depth of inter-personal connection and understanding that is an essential part of successful supported decision-making.
- Deafblind people are often restricted and mistreated by a lack of access to appropriate support to communicate their decisions, which is an essential component of meaningful decision-making. It is possible for a Deafblind person to be perfectly able to make their own decision without support, but not to communicate them to the people that need to know about them.
b. Barriers to implementing models for supported decision-making across legal, financial, health, education, employment and care systems across NSW.
- Lack of education and training opportunities for professionals to develop this practice.
- The role of time and familiarity in developing trusting communication partnerships with people requiring support. This is essential not only in ensuring a person’s decisions can be understood but that they can be communicated accurately and authentically to all necessary parties.
- Lack of essential support staff in this process including but not limited to CommGuides and Auslan interpreters.
- Confusion around administering payments for this support as it crosses a number of systems that are both Commonwealth and State/Territory responsibilities. There is a risk that if the determining factor for payment is not the need for the service but the context in which it is being used then they administrative requirements will become too unwieldy for practitioners to manage. Administrative hurdles need to be avoided where possible to ensure the correct balance between necessary safeguarding and encouraging sector growth.
c. The distinct experiences of and challenges faced by Aboriginal people and people from culturally and linguistically diverse backgrounds.
- Auslan interpreters are in short supply. The undersupply is exacerbated by location (regional much harder) and shifts in the interpreting landscape post-COVID (Video Remote Interpreting normalized and preferred). This has unique impacts for Deafblind Auslan users who’s vision often means they require the interpreter to be in the same room.
- Not only an issue of supply but skills. Deafblind interpreting not taught as part of interpreter training. Only one optional post-graduate course that had its first group commence last year.
- Some Deafblind people use bespoke augmented communication that is not widely understood. This narrows the pool of people that can be called upon to provide support especially with communication.
- The linguistic needs of Deafblind Auslan users and those using bespoke augmented communication means they are often not able to use platform providers or larger, generic service providers. Well known issues in this workforce are compounded for those who require specialist communication supports.
f. Measures to ensure that substitute decision-making is an alternative approach that is employed in appropriate and limited circumstances.
- Increase awareness and knowledge of deafblindness, Deafblind Communication and issues relating to sensory loss in people with complex multiple disabilities across key support and allied health staff. Substitute decision-making is common when communication is not possible. In the Deafblind community this often occurs more as a result of a lack of skills and knowledge among staff and supports than it does because the Deafblind person lacks the ability or desire to communicate. DBA has heard reports of neglect and abuse resulting in preventable harm due to the absence of competent communication partners.