Our What we have heard report outlines what you have told us needs to change.
Ten years ago we came together to fight for the creation of the NDIS. It was a collective effort to change Australia for the better. It has been an extraordinary journey since then. Ten years of experience also means ten years of learning that we can use to improve the scheme.
You have told us how the NDIS has transformed your lives. NDIS funded supports are making a difference. You have also told us how complex and costly the processes in the NDIS are. Navigating the system is leaving you exhausted and stressed.
Our report detail 10 areas for improvement, with five big issues we have been reflecting on.
- Why is the NDIS the only lifeboat in the ocean?
- What does reasonable and necessary mean?
- Why are so many children entering the scheme?
- Why aren’t NDIS markets working?
- How do we ensure that the NDIS is sustainable?
We are now moving from the discovery phase in our review to look for solutions. We need your insights to help to answer these big questions.
You can send us your ideas and have your say through Have your say. It will take you through each of the 10 priority areas and associated questions. You can answer as many questions as are important to you.
Applying and getting a plan
You have told us that applying for the scheme is not easy. Once you are in, getting a plan is no different. This means that dealing with the scheme is negative, confusing and stressful from the get go.
You have said that you feel like you have to present the worst version of yourself, or your children, to get what you need. And, you have to prove your disability over and over. Planning can become traumatic rather than an opportunity to imagine the future. We know that you are the expert in your own life. And the reliance on professional reports undermines this. It’s expensive and it doesn’t help.
A complete and joined up ecosystem of support
You’ve told us that disability supports are not planned, funded or governed as part of a whole ecosystem. This means that you are pushed to join the scheme to get supports that should be delivered in the community.
There is not enough support for people with disability outside the NDIS. More time is spent arguing about who is responsible for what, and who should pay for it, than on making the ecosystem work. The scheme needs to be part of the solution but not be the only answer.
Defining reasonable and necessary
We have heard that no-one understands what ‘reasonable and necessary’ really means. This means that it’s impossible to know what to expect from the scheme.
The definitions are too broad and confusing. And, it doesn’t seem to be clear to providers, health professionals or NDIA decision makers either. There are inconsistencies in how it is used and applied. Most Administrative Appeals Tribunal appeals are because of disagreements on this.
Early childhood supports
We’ve heard that early intervention for young children is not working. It means that you aren’t getting the supports you need.
It’s not helping children or their families. And it can isolate them from their communities. The scheme is being used to meet the needs of children with developmental concerns, and developmental delay. This is because other service systems or community supports are not available or accessible.
The support and service marketplace
You’ve told us the ‘market’ for getting your supports isn’t working. This means it’s hard for you to find supports that meet your needs.
It’s too hard to find the right supports and good providers. More workers are needed. The good ones are hard to find and harder to keep. These problems are amplified in remote and First Nation communities, where finding anyone to provide disability services can be impossible. The current market rules sets how much providers can charge. This approach doesn’t give providers an incentive to innovate or respond to your needs.
Measuring outcomes and performance
You have told us that you don’t have enough information to make informed choices. This means that there is not enough evidence to make good decisions.
You don’t know if supports will meet your needs or deliver good outcomes. Providers aren’t incentivised for good outcomes or pulled up when they aren’t performing. Better measurement of performance would help keep providers and government accountable. We need better data to understand where the NDIS is working well and where it needs improvement.
Achieving long term outcomes
We have heard that there is a lack of focus on long term outcomes. This means you are missing out on supports that enrich your life and future.
You want to participate in your community, be employed and reach your goals. The scheme is not helping with this. Plans only seem to care about the short term needs without considering the future. The scheme is creating an overreliance on paid services, which is risking segregation and safety. No focus on recovery is contributing to a reliance on support for everyday activities. This is at the expense of supports that build independence.
Help accessing supports
You’ve told us that the people who are supposed to help you navigate the scheme aren’t doing this. This means that you aren’t clear how to get the best out of the scheme.
You don’t have the right assistance to make good choices for you. It’s hard to find someone you trust to provide advice, information and advocate for you. Everyone is spending too much time and money trying to work through the NDIS process. The scheme is complex and constantly changing, which isn’t helping either.
Supported living and housing
We have heard that many of you have limited choice in where and how you want to live. This means you can’t exercise enough choice and control over your living situation.
There hasn’t been much innovation in housing and living supports since the scheme started. Specialist disability accommodation does not always meet your needs. Planning decisions often don’t consider living and housing supports in a connected way. And decisions are inconsistent and not transparent. Outdated ‘group houses’ still dominate the system.
We have heard that the NDIS has not done enough to safeguard you. This means that you don’t get the support and safeguards you need in a way that works for you.
The scheme isn’t helping you understand your rights or have assistance to speak up. More needs to be done to reduce and eliminate the use of restrictive practices that limit your freedom of movement and rights. Regulations for providers and workers are not responding to changes in the NDIS and the market. Participants, providers and workers feel regulation is more about ticking boxes than improving the quality of services.