HON ALISON XAMON (North Metropolitan) [7.11 pm]: I recently met with Mr Eddie Szczepanik, the chairperson of DeafBlind West Australians, and other representatives of the deafblind community. I rise to speak because I thought it was important to raise in this place the issues they brought to my attention. We discussed at length some of the challenges that the deafblind community specifically is having in seeking National Disability Insurance Scheme funding, and their involvement in the transition to the NDIS. I want to speak about some of the issues that were highlighted. It is also worth noting that although some of the issues we raised are specific to the deafblind community and are significant in and of themselves, many of the concerns and experiences relayed to me are applicable to other people I have met with—other communities with different types of disability. I think it serves as a concrete example of some of the potential issues that I raised last year when we discussed my motion on the NDIS and what would happen if effective mechanisms were not put in place to ensure effective communication, co-design and systemic advocacy.

The people who met with me were at pains to impress on me that although there have been challenges in accessing appropriate funding and having to go through systems of appeal, there is greater concern for members of the deafblind community who are socially isolated and do not have the resources available to be able to advocate for themselves in the same way the delegation I was able to meet with has. The delegation encountered its own problems, but it was very keen to say that if it was bad enough for its members, it was particularly concerned about how it was affecting more isolated members of the deafblind community. It was made very clear to me what I think are their entirely reasonable hopes—that access to the NDIS needs to be consistent and equitable. I am being told again and again that it cannot be based on an individual’s capacity to self-advocate. We need to make sure the systems are readily available to everyone.

A fundamental issue facing us is the lack of accessible information about the NDIS specifically for Australians who live with deafblindness. It means that communication breakdowns occur frequently for people with deafblindness around the best means for them to learn new information. People who are deafblind need to be able to access information through face-to-face interaction so that information can be repeated and specifically clarified. The feedback I have received is that the NDIA staff at all levels, unfortunately, as well-meaning as they are, lack an understanding of the specific needs of people with deafblindness. That means that it is taking considerable time and effort to explain the complexities associated with living with combined vision and hearing loss. NDIA staff are repeatedly not acknowledging the complexities of adequately and appropriately meeting the needs of a person with dual sensory impairment. Some of the specific issues raised with me include not understanding the need to put therapy hours in a plan, because at the moment there are no hours being put in for interpreting to access this therapy; increasing hours of support coordination that will not be utilised due to support coordinators not having an understanding of deafblindness, but providing no hours of specialist support coordination that would address the complex communication needs of the individual; reducing funding of specialist support coordination from one plan to the next, despite the level of complexity and need remaining exactly the same, if not increasing; and insisting on an occupational therapy assessment before purchasing equipment, even though no occupational therapist with experience in deafblindness is available, while staff with skills and experience in assistive technology specifically for people who live with deafblindness are ineligible to provide the service.

Getting the planning right up-front is absolutely essential. Asking for plans to be reviewed is not easy. If an applicant is requesting support beyond the typical support package, at the moment there is a six-month backlog before the request can even be looked at. There needs to be room for flexibility when these plans are being developed. The nature of disability is that no two people are ever going to present with exactly the same diagnosis and needs. One of the more persistent problematic issues is that people with deafblindness are being required to prove deafness again to meet eligibility requirements. Many people who live with deafblindness have access to multiple government departments throughout their lives and have already provided extensive evidence of their disability. The community really wants to have this evidence recognised, especially when the disability is known to be permanent and/or progressive. I have to say that that is not an isolated story. I have had people who live with multiple sclerosis, for example, being asked when it is expected they are going to recover. There is a real concern about not understanding the nature of what people are living with.

The Auslan interpreter and communication guide workforce shortage is another impediment. The South Australian government has recently supported fast-tracking interpreter training in order to try to fill the huge gap that has emerged in the provision of Auslan interpreting in people’s plans. Given these experiences, Deafblind WA is advocating for a number of changes to the application and the planning processes. Firstly, if an NDIS participant is identified as being deafblind, they need to work only with senior, more experienced NDIA staff. Ongoing specialist support coordination needs to be recognised as necessary to support Australians with deafblindness to action their goals and plan. Due to the lifelong complex issues and needs of individuals with deafblindness, allied health professionals with training in deafblindness are best placed to provide this complex support requiring additional skills and deep understanding of deafblindness. Professionals with demonstrated skills, training and experience working with people with deafblindness and assistive technology, regardless of profession, are eligible and preferred for undertaking assessment of needs, training and the provision of support for people with deafblindness. New proof of deafness or disability is not required for this cohort, as it already exists within multiple systems. These are concerns that are systemic and not just a problem with a transition—but that has certainly aggravated the situation. There needs to be avenues in place that enable people with disability to work with the National Disability Insurance Agency to address these sorts of issues. Mechanisms for co-design of services and funding for systemic advocacy are central to try to resolve these sorts of problems, and we need to look at that, ensuring we are catching up with what is happening in other states, particularly around areas such as funding of systemic advocacy so that we can ensure the successful implementation of the National Disability Insurance Scheme within Western Australia.


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