Choice, control and the NDIS – the findings

As I have written about previously, for the last year or so I have been involved in a research project into consumer experiences of the National Disability Insurance Scheme that has adopted a participatory approach.  What this means is three university-based researchers have been involved in co-producing a piece of research into the NDIS with eight community researchers who comprise people with disabilities.


This has absolutely been one of my favourite projects in a while and has allowed me to work with some fantastic people.  Tomorrow we officially launch the research.  In anticipation of the launch I wrote this piece in Pursuit. Read the original article.

You can find a link to the report here


The National Disability Insurance Scheme (NDIS) is the most significant reform of disability services in Australia in a generation. The scheme, introduced in 2013, aims to increase both the funding available for disability services and the control that people living with disabilities have over the design and delivery of their care.

It does this, in part, by handing greater control over care budgets to people with disabilities and their families so that services might be designed and delivered in a way that better meets their individual needs.

Recently, Australia was ranked last in an Organisation for Economic Co-operation and Development (OECD) study of quality of life of people with disabilities, and with the significantly worse outcomes experienced by people with disabilities, the NDIS is a welcome reform.

The NDIS is designed to improve services for people with disabilities and make them more accessible. Picture: Pixabay

We recently embarked on a research project, funded by the University of Melbourne’s Social Equity Institute, to explore the degree to which the NDIS is achieving its aims and objectives from the perspective of people with disability using these services.

We found that, despite aspirations to reform Australian disability services and to give greater choice and control to individuals with disabilities, the system is not yet operating in the way that is intended. It may even be exacerbating some of the inequities it was designed to solve.


We took a novel approach to the research process, which is participatory in nature, involving community researchers with disabilities working with University-based experts. Involving people with disabilities in the research process improved the quality of the project in terms of our ability to collect and analyse evidence effectively.

Together we collected data from people with disabilities and parents or adult children caring for people with disabilities, who have received services under the NDIS in the Victorian trial site of Barwon. It is difficult to be definitive about people’s experience under the NDIS and whether this initiative has succeeded in delivering on its aims. Participants’ expectations and experiences of the NDIS appeared to be strongly influenced by their circumstances.

Parents of young children tended to have high expectations and be strongly motivated to obtain comprehensive packages of services and support. Parents of adult children were more likely to note little difference in levels of support for their children since transitioning to the NDIS, but significant increases in administrative requirements and hurdles.

Those living with cognitive disabilities tended to report few changes in their everyday situations, while people living with physical disabilities had a range of views, from positive changes associated with increased independence to deep frustration with ongoing struggles to gain access to crucial resources.

Parents of young children with disabilities tend to be highly motivated to navigate the system on behalf of their child. Picture: Pixabay

The data we collected provides insights into the perceptions and experiences, both positive and negative, of a cross-section of people currently navigating the NDIS system. These include:

  • gratitude for increased funding to access services and resources and reduced waiting lists for services
  • frustration about inconsistent access to services, information and resources to be able to exercise choice and control over their care
  • disappointment that their knowledge, experience, needs and preferences are being overlooked in planning processes and in the design of the scheme
  • concern that boundaries between services they want to combine remain pronounced
  • doubt about the capacity of the scheme’s workforce, systems and budget to meet their needs
  • suggestions to simplify administrative systems, promote consistency in decision-making when allocating resources, and clarify the aims and objectives of the scheme.


Some of these issues are the types of ‘teething problems’ that we typically expect to see emerge with large-scale social reform programs. Our findings confirm other recent reports from National Disability Services and Every Australian Counts that outline a number of areas where changes might be made to improve the NDIS.

However, of greater importance than some of these proposed operational changes, are issues of equity. Improving care planning processes or working more effectively across administrative boundaries will not help guard against the NDIS exacerbating the traditional inequalities that it was, at least in part, designed to help alleviate.

Although there is the assumption that devolving power to individuals and their families should reduce traditional inequities in relation to socio-economic position, residential location, level of education and household income, amongst others, the reality is that we have yet to see this emerge and in some cases it seemed to us that the NDIS might exacerbate these inequities.

For example, if you live in a rural or remote area there are typically fewer providers available so you don’t have the same range of choices you might have in a metropolitan area. If you live in a rural area and choose to purchase services from a metropolitan area, the time it takes for the professional to travel to you is counted as time in receipt of that service meaning that you might get less time with that professional.

But it is not just the availability of services that poses challenges in terms of equities. Our research found that those who are better able, either through their own ability or support from family, friends and others, to understand and navigate these systems fare better overall. Those who are more isolated, socially excluded and/or living in greater poverty can find they are less well placed to make demands in terms of services and care planning processes.

So although the aspiration to reform Australian disability services is a noble one, the system is not yet providing the choice and control it promised to individuals with disabilities.

As the NDIS is now being rolled out nationally, processes need to be put in place to ensure it fulfils its aspiration of supporting a better life for hundreds and thousands of Australians with disabilities.

This research was funded by the University of Melbourne’s Melbourne Social Equity Institute. Helen Dickinson worked at the University of Melbourne until 2016 and was the leader of the institute’s Social Policy Across the Life Course research theme. She now the Associate Professor for Public Service Research at the University of New South Wales, Canberra and holds an honourary position with the University of Melbourne.

Banner image: iStock


Exciting news about JHOM

I am lucky enough to have a couple of editorial roles with journals, one with the Journal of Health Organisation and Management (JHOM) and the other with the Australian Journal of Public Administration (AJPA).

We recently got the very exciting news that JHOM has been accepted into the Social Sciences Citation Index and will get an impact factor.  This is exciting news as having an impact factor is one of the ways that academics (and research excellence exercises) determine the relative merit of publications.  JHOM was submitted for review about four years ago now so it has been a long journey and we are really happy with the outcome.

The press release can be found below and if you are interested in submitting a piece to JHOM then I am happy for you to get in touch with me directly.

Press release

As contributor to Journal of Health Organization and Management (JHOM), we are delighted to let you know that the journal has been accepted into Clarivate Analytics (formerly Thomson Reuters) Social Sciences Citation index (SSCI). This decision reflects the increasing quality and impact of the journal and the dedication of the editorial team, led by co-editors Helen Dickinson, University of New South Wales, Australia, and Suzanne Robinson, Curtin University, Australia.


SSCI is a key database within Clarivate Analytics Web of Science™ Core Collection and covers content in the social sciences discipline. Inclusion in the SSCI means that the Journal will receive an impact factor, the first one will released in Summer 2017.


To celebrate this exciting news, the latest issue of JHOM (Vol 31 issue 2) will be available on free access from 19th May- 18th June 2017. Please follow this link to the free access:


The editors are currently welcoming submissions to the journal. Inclusion in SSCI will provide greater discoverability for authors published, so now is an ideal time to submit your work. To submit to the journal, please use the online submission system:


For queries, please contact the Editors, Helen Dickinson,, Suzanne Robinson,, or the Publisher, Wendy Alderton,


Feel free to forward this exciting news to your peers and colleagues.


Finally, I would like to take this opportunity to thank you very much for your valuable contribution to the quality of the journal and your continuous support.


With very best wishes,


Emma Leverton





Emma Leverton, MA

Publishing Editor | Health and Social Care | Emerald Publishing

Tel: +44 (0) 1274 785157 | |   


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Launch of the Public Service Research Group

Yesterday evening saw the launch of the Public Service Research Group which I lead.  The press release associated with the launch is copied below.

UNSW Canberra’s School Of Business launches the Public Service Research Group (PSRG)

FOR IMMEDIATE RELEASE: Bringing together a wealth of public service experience and expertise across a broad range of disciplines and methodologies, the Public Service Research Group – launched on May 16 – uses a fresh approach to gain new insights into effective public service implementation and evaluation.

“People tend to focus on the design of policy and assume if you get that right, everything will be okay,” explains PSRG Director, Associate Professor Helen Dickinson. “We know that’s not the case and we’re more interested in the messy side of policy and public service, such as what happens around implementation, or when things don’t quite go to plan.”

Partnering with organisational clients, integral to the group’s research is that there will be a practical benefit for those who work in public service.

“We put a lot of effort into knowledge translation and making evidence more useful to practice,” says Dickinson.

Consisting of around 20 academics across the School of Government Business with backgrounds ranging from political science to health, systems theory, project management, economics, accountancy, HR, environmental studies, geography, public management, public administration and industrial relations, the PSRG has recently recruited eight experienced career researchers. The PSRG also works with an expert network of both national and international associates to ensure they have the best range of skill sets for any task at hand.

The PSRG’s inter-disciplinary, inter-methodological approach sets it apart from other research groups of its kind, with Dickinson highlighting its relevance given the changing face of modern public service.

“The reality of public services today is they’re designed and delivered by more than just the public sector,” she says. “There’s been a big expansion of contracting out services into private and not-for-profit community organisations and there’s a greater expectation that different groups and people have a say in policy-making processes. We think it’s extremely important to bring together those different sectors in the works we do, because that’s the nature of contemporary government.”

This collaborative approach also allows the PSRG to “work closely with clients to solve real issues they’re dealing with, rather than take a cookie cutter approach to research and problem solving,” explains Dickinson.

While working across a broad range of issues, the Group’s research will centralise around three themes, led by internationally renowned academics. The first, led by Dr Gemma Carey, focuses on large scale systems change and reform, the second, led by Dickinson, looks at diversity, equity and inclusion, while the third, led by Professor Deborah Blackman, focuses on public service capability.

“Those three themes, which were developed to address ongoing public service issues, encapsulate what we do, providing a practical framework for us to build on,” says Dickinson.

For interviews or further information, please contact


Budget 2017 sees Medicare rebate freeze slowly lifted and more funding for the NDIS: experts respond

File 20170509 11018 1upkul9
The future of the NDIS is seemingly secured in this federal budget.

Stephen Duckett, Grattan Institute; Chris Del Mar; Elizabeth Savage, University of Technology Sydney; Helen Dickinson, UNSW, and Michael Woods, University of Technology Sydney

As expected, the government has announced a progressive lifting of the Medicare rebate freeze. Together with removing the bulk-billing incentive for diagnostic imaging and pathology services, as well as an increase in the PBS co-payment and related changes, this will cost a total of A$2.2 billion over the forward estimates.

Other announcements include:

  • From July 1, 2019, an increase in the Medicare levy from 2% to 2.5% of taxable income, with the extra half a percent directed towards the NDIS
  • $1.2 billion for new and amended listings on the PBS, including more than $510 million for a new medicine for patients with chronic heart failure
  • a A$2.8 billion increase in hospitals funding over forward estimates
  • $115 million for mental health, including funding for rural tele-health psychological services, mental health research and suicide prevention
  • $1.4 billion for health research, including $65.9 million this year to help research into children’s cancer.

All up, these commitments equate to A$10 billion.

Medicare rebate freeze

Stephen Duckett, Health Program Director, Grattan Institute

As foreshadowed in pre-budget leaks, the government is slowly unthawing the Medicare rebate freeze, but at a snail’s pace. At a cost of A$1 billion over the forward estimates, indexation for Medicare items will be introduced in four stages, starting with bulk-billing incentives from July 1, 2017.

General practitioners and specialists will wait another year – until July 1, 2018 – for indexation to start up again for consultations, which make up the vast bulk of general practice revenue. Indexation for specialist and allied health consultations is slated to start from July 1, 2019.

Certain diagnostic imaging items (such as x-rays) will be the last cab off the rank. Indexation will start up again from July 1, 2020.

There is no mention of reintroducing indexation for pathology items. This may be due to the recognition that there is money to be saved in pathology.

Regardless of the reaction of medical lobby groups, it is too early to tell whether this glacially slow reintroduction of indexation will be enough to keep bulk-billing rates at their current levels. Practice costs and income expectations of staff have not increased dramatically over the freeze period as the Consumer Price Index has been moving slowly. But each additional day of a freeze means costs and revenues fall further out of alignment.

The jury will be out for a while on whether reintroduction of indexation is enough to restore the Coalition’s tarnished Medicare credentials with voters.

Certainly, the slow phase-in may attract cynicism, with a legitimate perception the government is doing the minimum necessary and at the slowest pace to ensure the issue is off the agenda before a 2019 election.

There is no sign in the budget that the government has sought any trade-offs from the medical profession in exchange for the reintroduction of indexation, so we will have to wait to put in place better foundations for primary care reform.

National Disability Insurance Scheme (NDIS)

Helen Dickinson, Associate Professor, Public Service Research Group, UNSW

Since its inception, a number of bitter political battles have been fought over how the National Disability Insurance Scheme should be funded. Many have been nervous the current Productivity Commission review of the costs of the scheme could lead to a scaling back of the NDIS before it is fully operational.

The NDIS operates under a complex funding arrangement split between federal, state and territory governments. Until now it has been unclear where the federal component of this commitment will come from, and a significant gap was emerging from the middle of 2019.

Today’s budget promises to fill this funding gap, in part through an increase by half a percentage point in the Medicare levy from 2% to 2.5% of taxable income. Of the revenue raised, one-fifth will be directed into the NDIS Savings Fund (a special account that will ensure federal cost commitments are met).

A commitment has also been made to provide funding to establish an independent NDIS quality and safeguards commission to oversee the delivery of quality and safe services for all NDIS participants.

This will have three core functions: regulation and registration of providers; complaints handling; and reviewing and reporting on restrictive practices. While such an agency will be welcomed by many, the devil will be in the detail as to whether it is possible to deliver this in practice.

Generic Medicines

Chris Del Mar, Professor of Public Health, Bond University

The government is set to save A$1.8 billion over five years by extending or increasing the price reduction for medicines listed on the Pharmaceutical Benefits Scheme (PBS).

This will be achieved in part by encouraging doctors to prescribe generic medicines that name the active ingredient (as in “90 octane petrol”) rather than the brand name (as in “BP” or “Shell”). This has the effect of pharmaceutical companies selling the drug that is cheapest.

It doesn’t work for drugs still under patent (which allows only pharmaceutical companies holding the patent to negotiate a price, compensating them for the drug development costs). But when drugs come off patent, any other pharmaceutical company can manufacture the generic drug for the best price.

Some doctors worry different brands might have different effects, but there are very few examples of patients being harmed by this. Australia’s Therapeutic Drugs Administration (TGA) makes sure drugs are manufactured to tight standards.

However, many patients know their medications by the brand name rather than the generic name. This same problem can happen right now (when patients are prescribed the same drug with two or more different names when they are prescribed by GPs, hospitals, or specialists).

Doctors are already alert to ensuring that different drugs names do not confuse patients – the danger is that they take the same drug twice, thinking they are different drugs.

Aged care

Michael Woods, Professor of Health Economics, University of Technology Sydney

The government has held the line on restraining growth in funding to residential aged care providers in this budget by implementing its pre-announced indexation freeze for the year, and a partial freeze in 2018-19.

The freeze was in response to concerns some providers were wrongly over-claiming payments under the Aged Care Funding Instrument (ACFI). The instrument determines the level of funding the government pays to providers to care for their residents.

The government has stopped publishing its annual target number of ACFI audits, so any proposed changes in compliance activity are now unknown.

The long-awaited consolidation of the Home Care Packages (which aim to help ageing Australians remain at home for as long as they need) and entry-level support through the Commonwealth Home Support Program has been put off for another two years, until at least 2020-21. This will be disappointing to consumers as a more seamless set of support services will improve their ability to remain in the community.

A welcome initiative is the additional A$8.3 million for more home-based palliative care services, although this extra support is budgeted to end in 2019-20.

Overall, the biggest unanswered issue facing the government in aged care is the need to develop an evidence-based and sustainable funding regime for residential care. To date we have seen short-term budget fixes and the commissioning of opaque rushed research reports.

The health minister needs to step back and establish a proper policy review process that undertakes sound research and consults widely. The review needs to establish a set of core funding principles and model options that address the varying incentives of residents, providers and taxpayers. It needs to adopt the one that transparently empowers consumers, provides market competition and results in long-term sustainability and certainty.

An inequitable budget

Elizabeth Savage, Professor of Health Economics, University of Technology Sydney

The budget has increased the Medicare levy (from 2.0% to 2.5%). It also has removed of the 2% budget repair levy, which benefits individuals with taxable incomes above A$180,000.

In 2014-15, only 3% of taxpayers had taxable incomes above $180,000. By contrast, the Medicare levy increase affects almost all taxpayers. This is a tax increase designed to generate revenue to fund the NDIS. The Medicare levy is essentially a flat tax, except for those at the lowest end of the distribution of taxable income.

Revenue could have been raised more equitably by increasing marginal income tax rates for higher earners (including making the budget repair levy permanent) or lowering upper tax thresholds.

What’s missing from the budget?

The 30% subsidy for private health insurance was introduced in 1999, and cost the budget A$2.1 billion in 2000-01. This cost has grown steadily and was estimated in the 2016-17 budget to be about A$7 billion for 2017-18. Despite high population coverage, consumers question whether private health insurance provides value for money.

There is abundant evidence the subsidy is an ineffective and costly policy, but it seems the politics keep reform of the subsidy in the too-hard basket.

From the budget speech and budget papers, it is not clear that there is any reform of the pricing of prostheses for private hospital patients. The Prostheses Listing Authority, the government regulator, sets minimum benefits for prostheses for private hospital inpatients.

The levels set are far higher than both prices in comparable overseas countries and those paid by public sector hospitals in Australia. Private hospitals are major beneficiaries when the regulated minimum benefits exceed the negotiated prices paid to suppliers.

Private health insurance premium increases are being driven by hospital benefits, of which 14.4% are for prostheses. In 2015, insurers paid out almost A$2 billion in hospital benefits for prostheses.

The previous health minister, Sussan Ley, raised prostheses reform as a priority, noting that insurers pay $26,000 more for a specific pacemaker for a private patient than a public patient ($43,000 compared with $17,000). It appears from early documentation that this problem has not been prioritised in this budget.

Stephen Duckett, Director, Health Program, Grattan Institute; Chris Del Mar, Professor of Public Health; Elizabeth Savage, Professor of Health Economics, University of Technology Sydney; Helen Dickinson, Associate Professor, Public Service Research Group, UNSW, and Michael Woods, Professor of Health Economics, University of Technology Sydney

This article was originally published on The Conversation. Read the original article.

Getting the NDIS “on track”

Of late there have been a number of critical reports about progress in terms of the National Disability Insurance Scheme (NDIS).  I wrote about some of these issues in a piece for the Conversation recently arguing that we might expect to see some challenges in the process of such a large scale reform.

Over the last few weeks there have been even more calls for the NDIS to make changes in order that it get back on trajectory.  National Disability Services – Australia’s peak body for disability provider services – released a paper called “How to get the NDIS on track” which details recommendations on the way forward for the NDIS.

While agreeing with the overall direction of travel the paper argues that the current reforms are placing pressure on a number of stakeholders and in particular service providers.  The paper makes a number of proposals about what can be done to improve the current system.  Many of these, perhaps unsurprisingly given the nature of this organisation, relate to pricing and the involvement of providers in care processes.  Others relate to the improvement of participant planning – which is a key point that we will report at the launch of our research into consumer experiences of the NDIS in a few weeks time (you can book a ticket to this event here).

You can hear me commenting on the report and the progress of the NDIS on the Wire in a piece on the NDS report and disability advocate responses to this.

This week Every Australian Counts – the original campaign for the NDIS and an organisation now committed to sharing information and views on the scheme – released a ‘report card‘ based on feedback from more than 2,100 supporters.  Although many are positive about the NDIS and the impact that this has had on disability services, there are a number of concerns particularly in relation to planning processes and the types of information available.

A particular challenge for the NDIS will be the observation that ‘people waiting for the NDIS are more likely to say that they NDIS is not living up to expectations, than people who are actually in the NDIS’.  This is also an issue that the National Health Service in England faces, where patients typically report higher levels of satisfaction than those in the general population.  This has led to continual challenges for these services and something that the NDIS will need to be mindful of given the likely political battles ahead.









Evaluating outcomes in health and social care

Back in 2008 I wrote a book called Evaluating outcomes in health and social care, which was part of a 5 book series called ‘Better Partnership Working‘ aimed at students and practitioners working in and around health and social care environments.  This particular book focused on reviewing the evidence for collaborative working and provided an overview of the different approaches used in evaluating joint working arrangements.

Last year Janine O’Flynn and I revised and updated the initial book and published a 2nd edition of the text.  We updated the evidence base and expanded this to take more an international perspective on the issues.

The reviews have started filtering through for this text (and for the broader series) and I will share these here as they emerge.  The first is from Emma Miller at the University of Strathclyde and who has worked extensively in the evaluation of collaboration and health and social care outcomes.  Her review of the book can be found here and in this she provides a very helpful overview of the content for those who might be interested in this text.



More on the NDIS and accountability

A few years ago myself, Helen Sullivan and Catherine Needham wrote a paper that speculated on what some of the challenges might be for the NDIS in terms of issues of accountability.  In this we argued that the individual funding component of the NDIS poses a number of interesting questions about accountability. The paper considered a number of accountability dilemmas and provided evidence from different national settings to illustrate how these accountabilities may manifest in an Australian context. The paper concluded by setting out a framework of accountability bringing together these different dilemmas to think about provision of care as a whole.

In recent months we have been collecting significant amounts of data with individuals in Federal and State government exploring the tensions and challenges that have arisen as the NDIS is rolled out across the country.  Over the next few months a number of new papers will come out that present this data.

In one of the first contributions myself, Eleanor Malbon and Gemma Carey revisited the paper outlined above to examine whether these types of accountability dilemmas are being realised in the early implementation of the NDIS.  In the paper we outline accountability dilemmas in relation to: care outcomes, the spending of public money, care workers, and advocacy and market function. We argue that examining these accountability dilemmas reveals differences in underpinning assumptions within the design and on-going implementation of the NDIS, suggesting a plurality of logics within the scheme, which are in tension with one another.

The contribution of this paper is to set out the accountability dilemmas, analyse them according to their underpinning logics, and present the NDIS as having potential to be a hybrid institution. How these dilemmas will be settled is crucial to the implementation and ultimate operation of the scheme.  No doubt this will be an issue that we revisit at a number of times over the following months.