The Consumers Health Forum of Australia (CHF) is the national peak body representing the interests of Australian healthcare consumers. CHF works to achieve safe, quality, timely healthcare for all Australians, supported by accessible health information and systems. One of the things they do in meeting these aims is produce a journal called ‘Health Voices‘ which is published two times a year to promote debate on health care issues affecting all Australians and of interest to health consumers, government and industry.
The latest issue focuses on how consumers can influence research. I have the privilege to have a piece in this issue alongside a number of leading research and consumer engagement voices, which I have written about a the co-produced project on the NDIS which I have previously written about in this blog. In this I reflect on what we learned about doing consumer-engaging research and where next for this field. The full article is open access and can be found here.
Although the National Disability Insurance Scheme (NDIS) is relatively young, there has been much debate over how it will be funded.
Treasurer Scott Morrison recently said Labor had left a A$57 billion shortfall in funding for the NDIS. So many were left scratching their heads at the announcement that next year’s proposed increase in the Medicare levy – which was supposed to cover some of this shortfall – would be scrapped.
So how much does, and will, the scheme actually cost? Who is supposed to pay for it and why is there debate over the funding?
Calculating the costs
These are difficult questions to answer because we lack high-quality data about the extent and nature of disability in Australia. The information we do have is based on predictions, and work is underway to check these are accurate.
The case for creating an NDIS was made by the Productivity Commission in its 2011 inquiry on Disability Care and Support. The commission recommended Australia’s system of inequitable, fragmented and inefficient disability services be replaced by a new national scheme that would provide insurance cover to all Australians in the event of significant disability.
The one thing all sides of politics agree on is the NDIS represents a significant increase in disability spending, which stood at around A$8 billion per year at the time of the initial Productivity Commission report.
Original estimates suggested the NDIS would cover 411,000 participants and cost A$13.6 billion at maturity. However the Productivity Commission now estimates that around 475,000 people with disability will receive individualised support at a cost of around A$22 billion per year.
The A$8.9 billion difference between the Productivity Commission’s original estimates and the current estimate is a substantial gap. But A$6.4 billion of this difference is due to pay rises awarded to social and community services employees.
The remainder is due to the growth in the population and also the inclusion of participants over 65 years who were not included in original estimates. Once we account for these, estimates are fairly close to those originally predicted.
Last year’s Productivity Commission review of costs found the NDIS was broadly coming in on budget. Greater-than-expected numbers of children with autism and intellectual disability were accessing the scheme, but not all those with an individualised plans were able to spend their budgets.
So, for now, the NDIS seems to be tracking as intended. The NDIS budget is estimated to gradually increase over time to 1.3% of GDP by 2044-45 as participants age. Estimates also suggest the scheme will produce benefits adding around 1% to the GDP.
Where the money comes from
The original Productivity Commission report suggested the federal government be the single funder of the NDIS and that revenue to support the NDIS be paid into a separate fund (the National Disability Insurance Premium Fund) to provide stable funding for the scheme.
The Productivity Commission suggested this approach because disability services have long been subject to debate about who should bear the costs of these services: the Commonwealth or the states and territories. Indeed, part of the reason for the NDIS was to guarantee funding for disability services and stop these debates and blame-shifting.
The way the NDIS is funded is complex, with revenue coming from a number of sources. The NDIS is funded via a pooled approach from Commonwealth and state and territory governments. The Commonwealth provides just over half of the funding for the NDIS and the rest comes from state and territories. This arrangement is governed by a number of bilateral agreements that are revisited every five years.
At the creation of the scheme, all existing money spent by various governments was directed into the NDIS to cover costs. Then, in July 2014 we saw a first increase in the Medicare levy: from 1.5% to 2% of taxable income.
Any additional funding the NDIS needs has to come from general budget revenue or borrowings.
The NDIS Savings Fund Special Account was established to collect the Commonwealth’s contribution to the scheme. This fund pools underspends or savings from across government, protecting these as a forward contribution to the scheme as it grows over future budgets.
When the Labor government originally introduced the NDIS, it said it would fund the scheme through an increase in the Medicare levy, reforms to private health insurance and retirement incomes, and a range of “selected long-term savings” including an increase in tobacco excise and changes to fringe benefits tax rules.
Labor said the combination of these revenue streams would ensure the NDIS was fully funded to 2023. But many of the savings Labor promised were intentional, rather than set in stone, and were not dedicated to the NDIS as the Medicare levy was.
It’s estimated the Commonwealth will contribute around A$11.2 billion to the NDIS in 2019. Of this, around A$6.8 billion will come from the redirection of existing disability funds and the Commonwealth’s share of the DisabilityCare Australia Fund.
This leaves an annual funding gap of around A$4 billion once the scheme becomes fully operational, accumulating to around A$56 billion by 2028.
The Commonwealth announced it would increase the Medicare levy from 2% to 2.5% of taxable income from July 2019 as a way of filling the funding gap. Estimates predicted this would raise an additional A$8 billion in revenue over its first two years.
The bill needed to do this had stalled in the Senate, with Labor and the Greens opposed. They suggested the increase should only be applied to those in higher income tax brackets.
Last week the Treasurer announced tax receipts were running A$4.8 billon higher than was estimated in December, meaning the levy was no longer needed.
For now it looks like funding for the NDIS is assured, but many within the disability community have expressed concern this does not assure funding for the long term and uncertainty may continue to prevail.
One of the great things about my role is having the opportunity to work with some fantastic PhD students. One of my current students – Aviva Kelk – is doing a PhD exploring the types of information that people with disabilities need to make decisions about care services in the context of individualised systems such as the National Disability Insurance Scheme. In all the spare time Aviva has outside of her PhD (!) she runs the organisation Clickability, an online service directory of disability services that features reviews written by people with disability.
Aviva is currently doing a survey of the kinds of information people who use and/or choose disability services need to make good decisions. If you have any insight into these issues and are willing to fill in a short survey then please see the message below. I hope to be able to follow up and in the coming months and tell you what Aviva finds.
I’m researching what information people want to help them choose disability or mental health services under the NDIS. It’s for my PhD at the University of Melbourne.
I’d love your help with a survey. It’s 11 questions. It takes about 10 minutes. Here’s the link:
I recently recorded a Podcast for the Policy Shop, which is hosted by the University of Melbourne’s Vice Chancellor – Glyn Davis on the topic of the NDIS. The other guest in this conversation (apart from my terrible cold) is Bruce Bonyhady, the former Chair of the NDIA. In this episode we discuss how this policy came to be, the scheme’s rollout, and whether the NDIS will in fact improve the livelihood of people living with disabilities in Australia. The episode can be found here.
I have written much on this blog of late regarding the National Disability Insurance Scheme and the various research projects I am involved with around this. But Australia is not the only country to have adopted an individualised funding approach and there is significant evidence from other jurisdictions about these schemes.
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.