NDIS update March 2020

3 reports about the scheme


As well as the regular newsletters about the operation of the NDIS, this quarter there are three major reports from very different sources into various aspects of the scheme, the agency that runs it, and the government legislation and decisions that have shaped and are shaping its course, direction and future:


1.Tune Review

The government commissioned Tune review into the NDIS considered what legislation needed changing. Commentary on the review from Every Australian Counts criticised the limited scope of the review that did not address highly important and contentious issues such as staffing levels.

2.Disability & Rare Disease

This report by the McKell Institute, commissioned by Rare Voices Australia, came up with alarming findings based on extensive survey data from people living with rare disease.

3.What happened to the NDIS?

The third report is from the research unit of the Centre for Social Impact at the University of New South Wales. This takes more of a historical journey through the design, legislative and political decisions that have led to the NDIS being, for better or for worse, what it is today.


Tune review into the NDIS

This review was carried out late last year to look at what changes to the legislation were needed to establish timeframes for key NDIS processes. It also looked at what else needed to be done to get the NDIS working better for participants and their families.

EAC commentary: The report found that participants and their families find the scheme too complex, too confusing, too inconsistent – and have to wait too long for everything. So Mr Tune made 29 recommendations for change.  The full report runs to 224 pages. We have had a chance to have a quick look and summarise it for you.

The full report is also available: https://www.dss.gov.au/disability-and-carers-programs-services-for-people-with-disability-national-disability-insurance-scheme/review-of-the-ndis-act-report


Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases

. . .

The McKell Institute is an independent, not-for-profit, public policy institute dedicated to developing practical policy ideas and contributing to public debate.

This White Paper was commissioned by Rare Voices Australia on behalf of partner organisations and people living with rare disease to inform their ongoing advocacy efforts for equitable access to high quality services for all people living with a rare disease. The White Paper was also timed to be able to inform the development of the National Strategic Plan for Rare Diseases.

This report tables alarming findings based on extensive survey data made possible by the participation of people living with rare disease.

It finds that a third of people have experienced a deterioration in the support they receive under the NDIS, that NDIS planners and coordinators often lack vital expertise to offer the support required, and that many people living with rare disease incur significant out-of-pocket costs just to receive some of their most basic needs.

7 in 10 people with a rare disease report not having their health and disability care needs met.


The National Disability Insurance Scheme (NDIS) commenced in a number of trial sites in July 2013 and currently covers over 200,000 Australians. The NDIS is scheduled to be fully rolled out by June 2020 and will cover over approximately 275,000 people.

Almost 1 in 3 people have experienced deterioration in the supports they receive under the NDIS. Respondents to the Rare Disease survey reported that NDIS planners and support coordinators lack necessary clinical expertise leading to failure to incorporate key support recommendations in plans.

The majority of countries studied have developed and are implementing rare disease plans and strategies covering access to services, early diagnosis and research. A key pillar in these strategies is the establishment of specialist centres for rare disease to provide disability and health care providers with up to date information on individual rare diseases and inform best care pathways.


Australia develops, endorses and implements a Rare Disease Strategy.


Australia establish a model of rare disease centres of excellence to address knowledge gaps and ensure all Australians with a rare disease have access to the best evidence-based care.


Australia introduce personal care plans to cover an individual’s health, education and disability care needs. These overarching integrated care plans would allocate responsibility for the delivery of services to specific levels of government.


The Government centralise existing information on rare disease with a searchable data base of information on rare diseases which health and disability professionals, patients and families, can access and inform.


Introduce mandatory training of relevant health and disability care professionals on the nature of rare diseases, effective management strategies, how to locate information and referral pathways to support and advocacy groups.


Urgent review of delays in access to equipment to ensure that NDIS participants receive approved equipment in a timely manner.


NDIA to incorporate a ‘fast tracking review’ category for people with rare diseases who have been identified as having permanent and significant disability. This would allow quicker access to additional supports when required through consultation with clinicians. Person centred care can be seen as valuable in itself, but it also aims to deliver:

  • Improved quality of services
  • Care that is needed when it is needed
  • Enable people to be more involved in caring for themselves, and
  • Reduce pressure on health and disability services.

Person centred care

Person centred care has many different components, and how it is implemented will depend on the specific circumstances of the services being delivered and the individuals receiving care. As such there is no single definition of what defines person centred care and it must be developed for each situation. There is extensive research on what matters to people receiving care and how to make sure people have a good experience. This research has identified a number of components to person centred care including:

  • Respecting people’s values and putting people at the centre of care
  • Taking into account people’s preferences and expressed needs
  • Looking at people’s whole experience of care to promote coordination and continuity
  • Making sure that staff are supportive, well trained in communication and striving to put people at the centre of their care
  • Making sure there is continuity between and within services, and
  • Making sure people have access to appropriate care when they need it.

A growing body of research shows that person centered care can improve people’s health and also reduce the burden on services. However, the evidence can be mixed because person centred care often means different things to different people. This makes it critical that we answer the question: “how can we place people with rare diseases at the centre of their care, and make this care appear seamless because it is organised around the individual?”

What happened to the NDIS?

by Associate Professor Gemma Carey, Research Director, Centre for Social Impact, UNSW, Sydney

The third report is from the research unit of the Centre for Social Impact at the University of New South Wales. This takes more of a historical journey through the design, legislative and political decisions that have led to the NDIS being, for better or for worse, what it is today.


NDIS related Newsletters:

22 Feb 2020 NDIS Newsletter https://mailchi.mp/ndis.gov.au/enewsletter_22_feb_participant?e=8bb3a5605c

3 Feb 2020 A wrap up of all the latest NDIS news from Every Australian Counts


  • core funds can now be used to pay providers for transport
  • Tune review into the NDIS
  • more hearings by the Royal Commission into Violence Abuse Neglect and Exploitation of People with Disability kicked off in Sydney on Monday, February 17

25 Jan 2020 NDIS Newsletter https://mailchi.mp/ndis.gov.au/enewsletter_25_jan_participant?e=8bb3a5605c

14 Dec 2019 NDIS Newsletter https://mailchi.mp/ndis.gov.au/enewsletter14_dec_participant?e=8bb3a5605c


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