Opinion
My vision for a more efficient and cost-effective NDIS
20th Oct 2022
Dear NDIA
I understand that in order for you to be confident that my increased disabilities are real, you require me to be assessed by an occupational therapist (OT) and by doctors, and for reports to be written about me and my functional capacity.
But I have been shocked at the time and cost involved. It has been an exhausting and draining process. I have persisted in the hope that eventually I will be supported and can stop focusing on my disability and instead focus on my life.
I have also been shocked that such a large amount of my previous plan had to be spent on the various professionals who have assessed me and written reports. I don’t dispute that their time is valuable and should be paid for. But a condensing of reports would be more efficient. It would be less for you to read, take up less of my time and cost less. More of my plan could be spent on stuff that actually supports me.
Given that you spent so much on my OT, I am surprised by my new plan because you’ve disregarded her recommendations. What was the point of having her write all those reports if they weren’t going to be heeded? Was this not, perhaps, a waste of taxpayers’ money? And my time and limited energy?
The plan you’ve given me doesn’t seem to reflect anything in the reports about my specific circumstances. It seems rather … generic.
I was surprised to see that in some of the areas in which I am struggling the most you have cut my funding, rather than increasing it. Does this mean that you considered my previous plan too generous? Does this mean you don’t believe that my increased disability needs increased support? If the reports from the OT aren’t enough to convince you, what will it take? And why did you require those reports in the first place?
Could I suggest a more efficient system?
You could require a single functional assessment from an OT, which outlines my disabilities and functional capacity. This could be entered into your system and would not need to be written about again. Each time a new disability or functional limitation is encountered, it could be added to the database.
Let’s give the example of Deafness. Deafness affects different people in different ways, and no two Deaf people are the same. But there are some broad categories that inform the types of support needed. For example, Deaf people who use Auslan and did not have access to language as young children usually have difficulty with English. A Deaf person who has a large amount of difficulty with English and had little childhood language access usually finds it very hard to access information in today’s world. Such a person may, for example, struggle to do a Google search because they cannot read and interpret the results. They may struggle with everyday tasks such as cooking and health management because they never received adequate education in Auslan in these areas. They may have difficulty understanding subtitles on TV. This could affect their behaviour, making ‘social appropriateness’ difficult when it comes to interacting with the hearing world. Such a person needs significant support to catch up on missed learning areas and to help them function in our society. Providing an interpreter for social and work occasions doesn’t even come close to providing the type of help people in this situation need.
The average OT has only a superficial understanding of Deafness, and thus does not realise that they need to enquire about these types of barriers. We Deaf people advocate for each other and teach OTs about our needs, and get them written into reports, but it’s an exhausting and draining process, and different Deaf people have different levels of access to advocacy, and varying skills when it comes to self-advocacy. There are plenty of Deaf people who need additional support but are not getting it, because they don’t know how to ask for it and their OTs don’t realise it is needed.
Every disability, and every subtle effect of that disability, that is brought to the attention of the NDIA could be entered into a database, so that this information is accessible forevermore.
That way, every bit of advocacy that has ever been done for any Deaf person who struggles with English would be right there in the database, along with explanations and justifications for those who are not familiar with the reasons why a certain support relates to a certain disability.
My new disability, which requires me to use a wheelchair, is orthostatic intolerance (OI) – it means an inability to tolerate being upright. This appears to be a fairly obscure disability, since the wheelchair companies I’ve dealt with do not seem to have encountered my needs before, and thus don’t know how to accommodate them. My OT, likewise, did not, at first, understand. My disability is well-established medically. I assume I am not the first person who has been funded by the NDIS for OI. But it would be really good if the information from those who have gone before me was captured and could be utilised for me. If I am truly the first, then the information I have provided on the condition and its ramifications should be recorded and archived so that the next person with OI who applies does not have to go through the same enormously draining process.
Once entering our circumstances into the database, we could be given a list of supports we expect to receive. The idea of standardised supports has been rejected in favour of creating plans based on individual circumstances, but this has resulted in those with better advocacy receiving better plans. With this database all circumstances would be captured, and if a new circumstance is encountered, it would be entered once the appropriate amount of support is decided upon. In this way, you'd make life easier for all of us, and cheaper for taxpayers too.
In the meantime, I await my hearing with the AAT and hope they grant me a plan that is better tailored to my circumstances.
Yours in hope
Asphyxia
This is an edited version of an article first published by Asphyxia.
The ALA thanks Asphyxia for this contribution.
Asphyxia is the author of Future Girl and The Words in My Hands, winner of both the Schneider Family and Readings YA Book Awards, currently being adapted for the screen. Her books, including the much-loved junior fiction series, The Grimstones, have also been shortlisted for numerous other awards. Deaf since the age of three, she learnt to sign when she was 18, which changed her life. She is now a Deaf activist, sharing details of Deaf experience and raising awareness of oppression of Deaf people and what we can do to change this. Her free online Auslan course has over 15,000 students. She is currently working on an accessible music show, Stranger Than Usual, which will be presented at Midsumma Festival in Melbourne, February 2023.
The views and opinions expressed in this article are the authors’ and do not necessarily represent the views and opinions of the Australian Lawyers Alliance (ALA).
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