A man with low vision and a woman wearing reading glasses sit at a table in a library. A book is on the table in front of them. The woman is assisting the man to read braile.

By Dr. Meredith Prain, National Head of Research and Centre of Excellence – Deafblind, Able Australia.

One of the driving forces behind the ‘Every Australian Counts’ campaign to establish a National Disability Insurance Scheme (NDIS) was the inequity of disability service provision, between States, Territories and regions.

Approaching its ninth year of implementation, the NDIS may have addressed to some extent the issue of equity across geographical jurisdictions, but it has done little to address the inequity of services to those in particularly marginalised and vulnerable situations.

In the case of people with deafblindness, I have observed excellent outcomes and seen individuals with disability thrive, when services are delivered in a coordinated, cohesive approach and particularly when family members are engaged and involved in recruiting all members of the support team. By the nature of deafblindness, multiple service providers are always required to address the numerous and varied impacts of deafblindness on all aspects of an individual’s daily functioning. Typically, a person with deafblindness will require to greater or lesser extents occupational therapy, speech pathology, functional vision assessment from an orthoptist, orientation and mobility instruction, communication guide support, technology training and support coordination.

At best, I have seen family members together with Deafblind Consultants (allied health professionals employed by Able Australia and Senses Australia), ensure a coordinated approach is taken to assessment and service provision, including specialist training of staff and regular support team coordination meetings to ensure all goals are being addressed by all team members as appropriate. For example, optimising communication environments and skills is typically required for all people with deafblindness and something that all team members can address if they are aware of the individuals specific needs.

At worst (and sadly more commonly), I have observed well intentioned family members, NDIS staff (Local Area Coordinators and Planners) and support coordinators, not being aware of the range of services available and needed by the individual, develop a plan which is inadequate to meet the needs of the person with deafblindness. The professionals who are required by the plan are called in, often with limited or no experience in deafblindness, undertake an assessment and maybe some individual work with the person with deafblindness, but other people working with the person have little or no awareness of exactly what has been addressed.

With low incidence disabilities such as deafblindness it is unreasonable to expect all NDIS staff and service providers to have the knowledge and skills to work with people with this complex disability, however it is the responsibility of the National Disability Insurance Agency to address this issue. Both workforce development and the recognition of the need for specialist services is required.

It is not a level playing field, when only those who have the skills, knowledge, resources and capacity to advocate to get an adequate and appropriate plan for themself or their family member can have their goals and needs met by the NDIS.

There is also high risk of those who experience difficulty navigating the disability service system falling through the gaping cracks, when no services are funded to undertake pre-planning activities with people who have an inadequate, or no plan at all. Navigating the disability service system requires a high level of cognitive capacity, English literacy, and technology skills, which precludes many people with disabilities, and people from culturally and linguistically diverse backgrounds, including people who are culturally Deaf.

Considerably more work needs to be undertaken by the National Disability Insurance Agency to address this inequity and ensure the most marginalised and vulnerable people who are eligible for the scheme, have equal access and representation at both the planning and service delivery stages.