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A learning system that measures what matters and builds an evidence base of what works

A learning system that measures what matters and builds an evidence base of what works

The NDIS currently supports over 610,000 participants though a $35 billion investment in 2022-23.369 Such a significant investment that has such a large impact on the lives of Australians should be backed up by a rigorous commitment to evidence-based practice, evaluation and continuous improvement.

At present there are also significant data gaps that limit the ability to measure what matters for people with a disability across the entire disability support ecosystem, both within the NDIS and beyond in the foundational support systems.

Future research, evaluation and data infrastructure should cover both foundational and

NDIS disability support systems. This is critical to provide an evidence-base that underpins an effective disability support ecosystem for all people with a disability.

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Measurement of participant, social and economic outcomes is poor and the NDIS Outcomes Framework is not fit-for-purpose

Under current data and evaluation frameworks, it is very difficult to link supports, investment and outputs to the achievement of participant goals and outcomes and broader societal benefits. In short it is difficult to demonstrate what works, for whom, and why.

The scheme currently measures aspects of participant and family member satisfaction and outcomes but does not capture the entirety of the impact of the NDIS on the lives of participants. This makes it hard to know what matters to participants and their family members.

The Review encountered and identified substantial gaps in data availability and linkage which meant a complete assessment of participant, social and economic benefits was not possible. For instance, it was difficult to measure the costs incurred previously by families and charities. Accurately evaluating the benefits of previously unpaid care for people that are now supported through paid care was also not possible.

The data gaps and evidence limitations have most likely led to a significant underestimation of net social and economic benefits. Addressing these limitations in data collections and quality is crucial to accurately measure the true impact of the scheme.

The current NDIS Outcomes Framework (the Framework) is limited in its coverage and does not include whole of system interactions between the NDIS, mainstream and other service systems. The outcomes it does measure are not directly linked to scheme costs. As a result, it is difficult to determine value and the impact of the scheme on quality of life and wellbeing for participants and their families. The Framework relies on participant satisfaction surveys, draws on insufficient data to measure participant outcomes and scheme effectiveness adequately.

Analysis of the appropriateness of the current Framework found it has few objective measures, limited measurement of outcomes outside the Scheme and difficulty measuring progress when evaluating whether participant goals were met.

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Significant NDIS policy and operational decisions are not made on a transparent and independent basis

We have heard concerns that NDIS participants are able to access therapies that may not be able to demonstrate evidence based high quality outcomes for people with disability and in some cases cause harm (such as some interventions and practices under Applied Behavioural Analysis).370 Within the Australian Government there are examples of evidence based benchmarking for public funding for other systems - for example, under the Medicare Benefits Schedule. These approval processes require robust evaluation of therapies and supports based on their validity, effectiveness, safety and the cost-benefit assessment of their efficacy in maintaining or developing the wellbeing of the person.

High-quality, open and independent research and evaluation activity, alongside knowledge translation of best-practice evidence into policy and provider actions, are critical to optimising outcomes, safeguarding participants, inspiring public trust, and supporting scheme sustainability.

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The NDIS has not been set up in a way that enables continuous learning

All governments should invest more in better research and evaluation of the disability support ecosystem. This should include increased sharing of data in a safe and secure manner so researchers, service providers and other governments can support improved evaluation. These investments would help build the foundations for a culture of continual learning and innovation in the NDIS and the broader disability ecosystem.

Governments recently agreed to establish a National Disability Data Asset (NDDA), which will link NDIS, social security, tax, health, hospital, housing, employment and justice data. It is a major opportunity and follows many years of work by Australian, state and territory governments, especially New South Wales, with the disability community. It will enable governments and researchers to examine the impact of a very broad range of policies and develop new data insights. However, despite the importance of the NDDA for long-term policy development and research, funding for this initiative has only been provided for two years.

NDIS data is currently structured to support actuarial analysis, because this has been its central purpose to date. However, a much broader use of NDIS data is needed. To enable this, the data should be structured according to the International Classification of Function. It is also important that data is made more easily available to researchers (with all important safeguards) to ensure independent scrutiny of the scheme.

Providers and workers are a critical part of the disability support ecosystem. Their approach to delivering supports depends on up to date knowledge of what works and what is best practice. Despite some initiatives like the NDIS Commission’s Workforce Capability Framework and Provider Alerts, as well as some National Disability Insurance Agency (NDIA) policy documents, overall there is an inadequate systemic focus on knowledge translation to update providers and workers.

Research funding

Funding of research to underpin development of the NDIS and the disability ecosystem is hampered by insufficient funding. Funding is required to support research projects and building research capacity in universities, research institutes and disability community organisations.

The lack of a dedicated research funding source is striking given the significance of expenditures on the NDIS and disability and contrasts with medical research which is supported by the Medical Research Future Fund and the National Health and Medical Research Fund. Commitment to improved funding has enabled Australia to become a world leader in medical research and there is a similar opportunity in disability research.

The Australian Government has committed to establishing a National Disability Research Partnership (NDRP) under Australia’s Disability Strategy. It brings together the Australian Government, people with disability, families, carers, representative organisations and researchers. It is developing an NDRP research agenda. This is a small but important initiative with significant potential to grow.

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