This week saw the launch of the website and resource ‘19 Stories‘. This is a product of a collaboration between the Disability Research Initiative at the University of Melbourne, and Belonging Matters, a community based advisory and capacity building resource. With assistance from The National Alliance for Capacity Building Organisations, which include Belonging Matters (VIC), Community Resource Unit (QLD), Imagine More (ACT), Valued Lives (SA), Family Advocacy (NSW) and JFA-Purple Orange, people with disabilities were invited to submit their stories from all over Australia. This is in response to the fact that although a number of people talk about social inclusion, it is not always clear what this actually means and what it looks like when done well.
The 19 stories capture the diverse ways that people are living inclusion. The stories help others get to the essence of what ‘inclusion’ can mean in practice, in the lives of this who are doing it. These are strong and positive stories about the ways in which people with disabilities are engaged within their communities.
I had the pleasure of being asked to write a reflective piece drawing together the systematic review that the research team did around disability and social inclusion and the kinds of policy mechanisms that Australia has developed to date with the 19 Stories hosted on the website. In this I reflect on the tendency of many of these policy to seek to ‘fix’ people with disabilities and not engage with the broader population, I argue that until we consider social inclusion as being about everyone and not just people with disabilities, then it is unlikely we will succeed with this aim. You can find this piece here and I highly recommend checking out the stories and resources on this website.
Last week I had the pleasure of going on the program Life Matters on Radio National to discuss the NDIS. I was part of a panel brought together to discuss the roll out of the NDIS, some of the successes to date and some of the challenges now and in the future. I was joined on the panel by two wonderful people – Leah van Poppel of the Youth Affairs Council of Victoria and Kevin Stone of the Victorian Advocacy League for Individuals with Disability.
We had a great discussion of the NDIS and its impacts on disabled people that involved research, advocacy and consumer perspectives. You can catch the version of the discussion here.
We have been doing a lot of promotion of the research we did funded by the Melbourne Social Equity Institute into the National Disability Insurance Scheme of late. One of the things we had the chance to do was to present at the Victorian Parliamentary Library. Myself and two of the community researchers presented the findings and took questions from an audience including a number of MPs from the Victorian government. Other community researchers joined us in the audience and took part in the discussion that followed.
In addition to having a wonderfully beautiful library, the librarians are very adept with knowledge translation via social media and have produced a short video clip on our research. You can find this here (if you can bear to look at my face for a few minutes).
This week two articles on the National Disability Insurance Scheme have made it to early view with Social Policy and Administration. Both deal with important aspects of the scheme drawing on data collected with a variety of different stakeholders from across the system.
The first with Catherine Needham, compares the introduction of individualized budget policies for people with disabilities in Australia and England. Data is drawn from semi-structured interviews undertaken in Australia with politicians, policymakers, providers, disability rights groups and care planners, along with analysis of policy documents. This data is compared to the authors’ earlier research from England on the personalization narrative. We argue that the National Disability Insurance Scheme (NDIS) currently being introduced in Australia deploys an insurance storyline, emphasizing riskpooling and the minimizing of future liabilities. This contrasts with the dominant storyline in England in which attention has focused on the right to choice and control for a minority of the population. This difference can be explained by the different financial context: the NDIS needed to build public and political support for a large increase in funding for disability services, whereas in England the reforms have been designed as cost-neutral. Tensions in the English narrative have been about the extent to which personalization reforms empower the individual as a consumer, with purchasing power, or as a citizen with democratic rights. We conclude that Australia’s approach can be characterized as a form of social investment, evoking tensions between the citizenship of people with disabilities now and the future worker-citizen.
The second is with colleagues at the Public Service Research Centre on the topic of market stewardship in the NDIS. We argue that personalized care and market-based approaches to public service provision have gained prominence in a range of Organisation for Economic Co-operation and Development countries. Australia has recently joined this trend, launching a complex and expansive programme of individualized care funding for disability through the National Disability Insurance Scheme. Public sector markets (i.e. where governments either directly fund a market by way of competitive tendering, or through personal budgets) have been embraced by actors at different points of the political spectrum and for a range of reasons, including efficacy and efficiency gains, empowerment of citizens and efforts to cater for diversity. Despite the growing dominance of public sector markets and individualized funding, many questions about the role and responsibility of governments in managing and regulating these markets remain unanswered. In this article we outline different roles governments might assume in the creation and management of public sector markets, based on the types of risks governments are willing to take responsibility for. We argue that to fulfil the social contract between government and citizens, governments need to ensure that markets are properly stewarded and embedded in broader social safety nets. This, we contend, can ensure citizens receive the gains of market models while being protected from market failures or market-produced inequities.
Our research into the NDIS continues and expect more papers to follow.
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.
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.
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.
EXPECTATIONS vs REALITY
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.
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.
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.
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.
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.
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.
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.
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.
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.
A few weeks ago I was one of a number of people invited to attend the Labor National Health Summit. This event was held to help shape Labor’s health policy agenda heading into the next Federal election.
Gemma and I are currently involved in a number of different projects examining different aspects of the National Disability Insurance Scheme as it is implemented across the country (some of these I have written about before and others are coming soon). One of the themes that has been discussed across many of these different research projects is where the boundaries lie between the offer from the National Disability Insurance Scheme and what is the responsibility of mainstream services. Most of those who are eligible for individual funding packages under the NDIS will likely access a number of mainstream services in addition. Yet, our research indicates that a number of discussions and debates are arising around where precisely these boundaries should lie and who should be responsible for funding which aspects of these services. In our paper we flesh out the facets of these debates in more detail and reflect on how similar some of these issues are to those that have played out in other contexts (e.g. the UK). In the coming weeks I will report more on consumer experiences of these boundaries from another research project I am involved in. Those interested in education may also wish to take a look at this article from academics at Deakin University who have also identified similar challenges in terms of boundary-patrolling between the NDIS and education.
If you are interested in the special edition and would like to head to Sydney for the launch this will take place on the 24th February 9.30-12.30 at Sydney Hospital. This event will feature a keynote address by Dr Robin Miller on international perspective on integrated care. Robin is a Senior Fellow and Director of Evaluation at the Health Services Management Centre, a Senior Associate of the International Foundation for Integrated Care and a co-editor of the Journal of Integrated Care. This will be followed by a presentation by Professor Joanne Travaglia on reflections on integration in Australasia. Jo is Professor of Health Services Management, Faculty of Health at the University of Technology, Sydney. If you would like to attend please RSVP your attendance to Daniel.Shaw@health.nsw.gov.au by COB Monday 20th February 2017.