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What we have heard report

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Co-Chairs Lisa Paul AO PSM and Professor Bruce Bonyhady AM talk about the What we have heard report.

Have your say

As you know, Disability Ministers have asked us to review the NDIS and, especially, improve the experience of participants and ensure that the NDIS is sustainable.

This report outlines what we have heard so far from you. Part A draws out five issues which we think are the most challenging and important given our Terms of Reference from Ministers and what you have told us. Part B provides more detail on 10 areas you have identified for improvement.

For each area, we have included questions. We invite you to answer the questions which are most important to you, because 10 years on we need all your collective wisdom and experience to help us find solutions to the key challenges facing the NDIS today.

Ten years on

Ten years ago, people with disability, their families and the organisations supporting them came together to fight for the creation of the NDIS. It was a collective effort to change Australia for the better, underpinned by the UN Convention on the Rights of Person with Disability.

It has been an extraordinary journey since then. Australia has led the world.

You have told us the NDIS has transformed the lives of many people with disability and their families. You have told us about the difference NDIS supports make to your everyday lives and to your hopes and plans for the future.

We have heard how much you value choosing and organising supports in the way that works best for you. We have also heard about quality services and skilled workers who really care and want good outcomes for participants.

The NDIS continues to also generate significant broader social and economic benefits for Australia. Employment growth in the care and support sector is just one example of broader benefits.

Australians have told us how proud they are of the NDIS. They see it as practical expression of Australian values of fairness and opportunity.

What we’ve learned so far

Ten years of experience with the NDIS also means ten years of learning that can be applied to making the scheme better.

Since we began our work many of you have shared your experiences in the NDIS. This is invaluable to our work – we can’t do it without you. With a better understanding of what is causing problems, we can develop better solutions.

At the heart of our Terms of Reference is improving the participant experience.

You have told us how complex and costly the processes in the NDIS are. Navigating the system is leaving participants and their families exhausted and stressed. These issues touch every part of the scheme from when participants join the scheme and create their plans, through to getting supports and how they are delivered.

I love the NDIS. It has been a life saver for my family but not without stress, anxiety… and seeing my family at breaking point. Every year we go through the same mundane crap and have to fight the fight, not knowing what the outcome will be.

– Family member or carer

Five key challenges

As we have reflected on all the things you have told us, including your experiences as participants and as families, five key issues have emerged. We would especially like your ideas about how best to solve these five major challenges.

1. Why is the NDIS an oasis in a desert?

The NDIS was never designed to support all people with disability.

Community supports for all people with disability, as originally proposed, have not been delivered. As a result, the NDIS has become an oasis in the desert. This has had a significant impact on the cost of the scheme. It has also left people who are not in the NDIS without support. This is deeply unfair.

2. What does reasonable and necessary mean?

The NDIS funds ‘reasonable and necessary’ supports for participants. But reasonable and necessary is poorly defined. This unresolved issue is the cause of many of the scheme’s challenges – including stressful, time-consuming and poor planning experiences, inconsistent and inequitable decisions about funding and disputes between participants and the Agency.

3. Why are there many more children in the NDIS than expected?

Many more young children are entering the scheme than was expected. This partly reflects overall higher-than-previously identified rates of disability amongst young children. It also reflects a lack of supports for children with disability, outside the NDIS, in mainstream settings. With so few supports outside the NDIS, it is not surprising that parents are fighting to get their children with developmental concerns, delays and disabilities into the NDIS. Then, after receiving early intervention supports, they are not leaving the scheme. 

The Panel has found that early intervention is not always based on best practice. Support for families has largely been ignored. There has been a focus on diagnosis rather than support needs. These failings – together with the lack of supports for all children with disabilities in mainstream settings – is undermining the sustainability of the NDIS.

4. Why aren’t NDIS markets working?

The markets in the NDIS have not worked as originally imagined. Competition has not produced improved quality, innovation or diversity of services for all participants in all locations. For many participants, especially in remote areas, the limited availability or poor quality of services means that in practice they do not really have choice or control over their supports.

Workforce quality, training, and retention are also major issues. The market system has not driven inclusion and helped to nurture connections with family, friends and community. In fact, sometimes the exact opposite has occurred. All of these failings are undermining outcomes for participants and contributing to increasing scheme costs.

In addition, not only do we not know whether participants are getting good outcomes such as employment and a good life; but we also don’t know the relative quality of the supports they receive.

5. How do we ensure that the NDIS is sustainable?

The NDIS is an uncapped, needs-based scheme. However, the NDIS must also be sustainable and its costs predictable for governments and the public. It also must provide certainty for participants and their families.

We want your feedback on how to best to measure both the benefits as well as the costs of the scheme and how to ensure the scheme is sustainable. How can the Review better balance the goals of choice and control and sustainability and contribute to the new sustainability framework foreshadowed by National Cabinet?

What’s next?

We are now responding to the issues you have identified. We are looking for solutions. We are especially looking for solutions in the priority areas we have identified as the most challenging and needing the biggest shifts.

We need your help again. We need your insights to help to answer as many questions as you think are important to you.

We also would like you to tell us if we have missed anything important to you.

You can send us your ideas through our online survey as well as in-person and online engagement opportunities through the Review, disability representative organisations partners.

The same collective effort from ten years ago is required again today. Together, we can get the scheme we fought for back on track.

Our recommendations in the final report will go to disability ministers in October 2023.

Between now and then we look forward to engaging further with you as, together, we find solutions we can present to governments.

Yours sincerely

Professor Bruce Bonyhady AM

Co-chair, Independent Review of the National Disability Insurance Scheme

Ms Lisa Paul AO PSM

Co-chair, Independent Review of the National Disability Insurance Scheme