A vision for reforming the NDIS as a regenerative system of support co-designed with people with disabilities.
Authors: Dr Simon Duffy and Dr Mark Brown
This report is a global perspective on the Australian National Disability Insurance Scheme (NDIS), which is the primary system for funding and organising supports for people with disabilities in Australia. It was commissioned by Disability Advocacy Network Australia (DANA) at a critical period in the development of the NDIS. The report offers a positive and progressive vision for how the NDIS can develop, while at the same time addressing the urgent problem of ensuring the sustainability of the NDIS.
The creation of the NDIS, with its objective of ensuring people with disabilities get the support they need to be able to take their rightful place as full citizens has been one of the most important global innovations in disability rights of the past few decades. No other country has shown the same level of ambition or generosity of spirit.
The NDIS has led to many people getting the support they need to lead better and more independent lives, freed from the indignity of waiting lists and giving people choice over the services they receive. There is growing awareness of the validity of disability rights and important changes in thinking and practice that should neither be forgotten nor undervalued.
However the system design of the NDIS is flawed and it seems unsustainable. It places too much confidence in the capacity of a bureaucratic system to ration and regulate how resources are used. It places too little trust in citizens, especially Australians with disabilities, to make the best decisions about how to use these resources. No particular group is to blame. Cost pressures keep increasing as everyone tries to do their best to meet their needs. It is the design of the system, not the behaviour of any particular group, that is causing the current set of interconnected problems.
Unless there is a fundamental change to the design of the NDIS then cost increases will continue at an unsustainable rate. Currently the only cost-control mechanism are the opaque rules used to define and agree packages of support. However this control mechanism is inadequate, and the desperate attempt to fix the system by constantly changing these rules only adds to people’s negative experience of engaging with the NDIA. Eventually the growing costs of the NDIS could even put at risk Australia’s commitment to disability rights and invite the policies of disability stigma that have been seen in the UK.
The good news is that the NDIS can be reformed. Fundamentally this requires different kind of thinking about the challenges ahead and the way in which good solutions are generated. We need to adopt a regenerative vision of inclusion and citizenship for all. We need to understand that people’s ability to live a life of equal citizenship and reasonable security is determined by more than the money or by the services people receive. The quality of our lives is primarily shaped by our relationships, communities, gifts, passions and ability to combine all of these into a life of meaning.
Instead of being narrowly limited to the funding of services, tied up in complex packages, overly specified and peculiarly priced, the NDIS should be designed to invest in people, places and ongoing innovation. Instead of trying to manage an open-ended budget by the use of mysterious and ever-changing rules, the NDIS should repopulate inclusion, ensuring that Australians with disabilities, their allies and the wider community have the necessary powers and responsibilities to make the changes necessary.
The challenge is to put the heart back into the NDIS, to ensure that it operates in a more human way, so that it can now achieve the principles and vision that first inspired its creation. Australians with disabilities need to open up a new conversation about how the NDIS really works. The 2022 NDIS Review provides an opportunity for change; but whatever the immediate changes it brings about, what is most important is that the Australians with disabilities work together to develop an effective critique of the NDIS and a long-term vision for its reform.
1. Create meaningful entitlements - To make good decisions, innovate and make efficient use of resources people need real personal budgets. This means that money belongs to the person and that everyone gets the support they need to help them manage their budget when necessary.
2. Embrace peer support – Isolation and individualisation increase insecurity and undermine learning and sharing. People with disabilities and their families need to be connected to each other, to learn with them and to grow in strength and confidence by sharing stories, information, training and by creating new solutions together.
3. Root support in community – The current system pays insufficient attention to communities of geography or to the First Peoples of Australia. Communities have a critical role in creating, welcoming and supporting the contribution of people with disabilities. Support should be rooted in community and services should act as a bridge to inclusive solutions.
4. Renewed governance - As citizens, people with disabilities should have a clear role in negotiating the overall level of resource committed to the NDIS and the frameworks for its distribution. The NDIS needs to be held accountable, not just for its cost, but also for its effectiveness at helping people achieve citizenship and supporting communities to advance inclusion. This requires rules that ensure States, communities and other allies share positive incentives to manage resources effectively.
In the coming months we hope that Australians with disabilities can work with their allies and with the Australian Government to agree the urgent changes necessary to ensure the sustainability of the NDIS. These could include reaching appropriate agreements on the overall level of funding needed to meet individual and community need and an open and inclusive process for meaningful review and improvement, one that ensures that Australians with disabilities are guaranteed a clear role in decision-making in the future.
The NDIS needs a radical redesign both to ensure it is fit for purpose now and so that it can adapt to a changing world, new challenges, opportunities and a better vision for all Australians. It is time to leave behind the bureaucratic mentality that dominates the current system. Australians with disabilities deserve a dynamic and inclusive approach to ensure that every Australian counts. The work of inclusion and citizenship is ongoing. There will be further changes to the NDIS and the NDIS should continue to evolve to play its part in ensuring every Australian really does count.
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The publisher is Citizen Network Research. Redesigning the NDIS © Dr Simon Duffy and Dr Mark Brown 2023.
disability, Inclusion, Local Area Coordination, Personalised Support, Self-Directed Support, social care, Australia, Paper
