NDIA Accountability Project

Impact of NDIS changes on a man with intellectual disability and autism

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30.3.21

This document is a submission to the Joint Standing Committee on the National Disability Insurance Scheme – Independent Assessments

I am the sister of a man with intellectual disability and autism.

I completely oppose both the foundations which underly the decision to attempt to introduce ‘independent assessments’ as well as how they are proposed to operate.

So many exciting things have happened for my brother with the support of the NDIS. Two of the most recent examples are:

  • We have moved forward again (after being waylaid by COVID) to support him develop a small enterprise. He will make and sell a soil enricher made up of coffee grounds and untreated sawdust. The Scheme provides support workers, and importantly help with allied health expertise around skill development and equipment which will help him undertake the tasks of his enterprise. We are so pleased to be thinking about how my brother can be an active economic contributor to his community.

  • The other exciting thing is the prospect of the new housing support called Individualised Living Options. We look forward to a planning conversation in June 2021 when we will be able to discuss his living arrangements. Instead of round the clock support workers, my brother lives with supportive housemates who provide needed assistance and receive a rental subsidy in exchange. Individualised Living Options provides an interesting pathway to explore how the NDIS could be part of the solution of his housing model.

I am mentioning these two developments because they are aspirational. And because they shine a light on the principles of the legislation to increase social and economic participation of people with disability. These two examples show the ‘leg up not hand out’ approach that is so powerful about the Scheme.

Concerns About Changes to the National Disability Insurance Scheme

We get to consider them because of the goal setting and personalised planning nature of the Scheme. Our family use this opportunity to think beyond ‘what is’ to ‘what could be’ and we ask the Scheme to support the reasonable and necessary disability support requirements that flow from this planning.

That is why I am writing to you now to express my deep concern about planned changes to the National Disability Insurance Scheme. And ask for your support in making sure they do not go ahead without proper consultation with people with disability and their families.

What has happened so far is not proper consultation because the major thrust of the reforms has already been decided.

The Minister for the NDIS Stuart Robert and the National Disability Insurance Agency have announced that all new and existing NDIS participants will now have to undergo compulsory assessments to be able to get support from the scheme.

However I am really worried that instead of fixing the problems, the NDIA and the Minister have suddenly introduced something new that looks like it will add even more red tape and just put people with disability into convenient “boxes”.

Now these standardised assessments will be the ONLY thing that determines how much support people will receive. This rips out the guts of the Scheme, as my examples highlight. It further entrenches a wholly medicalised model, where funding is ONLY connected to a disability label that you have to laboriously spell out. There will be no room for considering ‘what could be’. Rather we will once again be stuck in the same old questioning of time immemorial where we have to reduce and humble my brother, focus on all he can’t do with a complete stranger, in order to secure funding. How will we know what he needs to learn for his business? How will we be able to discuss a change in his living arrangements which will better suit him ?

I’m so upset that we are once again in a place where we have to start thinking about how we answer assessment questions, instead of imagining how my brother can participate further in Australian society.

  • Secondly I do not think these changes will work in my brother’s circumstances. He does not speak. My brother understands lots of things but he will not understand these questions and he has no means of answering them either. He will also not be able to remain present and attentive for 3 hours. This then pre-supposes that the assessment answers will rely on another person responding - presumably a family member. This seems entirely subjective and defeats the purpose.

  • I am deeply concerned that his supports will wholly rely on the responses that we do or don’t give.

  • Lastly, the machinations of how and which organisations were awarded huge sums of taxpayer money display enough risk to bring it to a halt. It is ridiculous to assert these are ‘independent’ when they are very similar arrangements to Local Area Coordinator partners and those organisations have become totally entangled in the implementation of the Scheme as de-facto outsourced planners. And what’s so great about independent anyway? The beauty of the Scheme is in developing professional relationships with practitioners which help us progress in our lives.

  • Finally, I am appalled that these changes will not be able to be reviewed by the AAT.

The implementation of the Scheme does need continuous improvement The focus of that should be changing the Agency in charge of its implementation and to introduce the changes which Participants have consistently and independently assessed and voiced since 2013.

The legislation is sound. The heart of the Scheme is robust. Leave it alone.