A new paper I am involved in has just been published by Disability and Society and written with a bunch of amazing scholars at the University of Sydney. In this paper we explore issues of ableism within universities. We argue that little attention has been paid to how we can support people with disability to develop their careers as researchers. I have written previously about issues relating to gender in academia and I think that this is an area that is even more neglected.
When we reviewed the literature we found that there is little attention paid to this issue in terms of research. So in plotting a way forward we draw on personal testimonies of four of the authors who are researchers and who have experienced career challenges in part at least because of their disability. In the paper we develop a series of recommendations in terms of how universities might better support individuals with disability within the academy.
The abstract for the paper is below and the full version can be found here.
The academy should be a welcoming environment for people with disability. Across Australia, however, there is a current shortage of programmes supporting people with disability to develop their careers as researchers. This article critically investigates current practice and experiences concerning universities and the employment and career development of people with disability as advised by the literature, and how this practice aligns with the lived experiences of several of our authors. Our review of the literature utilising Scopus, PsycINFO and ProQuest databases found a deficiency of research attention on this topic, with only 16 relevant articles identified. This paucity of literary evidence has been augmented in the article by personal stories shared by four of its authors. By focusing on evidence-based measures with potential to support disability employment and career pathways throughout universities in Australia and elsewhere, this article challenges leaders to address ableism and to advance a more inclusive academy.
Although our project ‘Choice, control and the NDIS‘ completed some time ago, we are now starting to see some of the academic outputs follow. Just published is a paper by based on this data and other review data. In the paper we focus on the implementation of the scheme, some of the challenges that have emerged so far and implications for policy and practice. Below is the abstract and the paper can be accessed without a pay wall here.
Australia is immersed in its largest reform of disability services in a generation – the staged rollout of the National Disability Insurance Scheme (NDIS). Enacted swiftly to capitalize on rare bipartisan political and public support, the $AU22billion scheme promises to design and deliver disability services differently, with emphasis on service user choice and control. However, the scheme’s rollout is outpacing the readiness of service users, service providers and the agency charged with implementing it to achieve its stated aims, threatening to derail it. Research suggests issues arising in the implementation of the scheme can be attributed in part to the design of the policy and, in part, to how it is translated into practice, both making scant reference to lessons from comparable reforms. Reflecting on the implications of these findings for policy and practice, we explore a range of challenges that arise when embarking on large scale reform in an environment of tight timelines, high expectations, extant policy silences, competing priorities, and jurisdictional ambiguities. This paper adds to the growing body of literature on the NDIS by bringing in the views of participants, and elaborating on implementation challenges posed by its governance structure, system architecture, and administrative structures.
A few years back I was lucky enough to be part of team who were funded to do some work exploring the impact that the NDIS is having on service providers. The work was funded by the Australia and New Zealand School of Government and reported a little bit ago, but now the journal articles from this project are starting to emerge.
The first is in Health and Social Care in the Community and the abstract appears below:
As governments worldwide turn to personalised budgets and market‐based solutions for the distribution of care services, the care sector is challenged to adapt to new ways of working. The Australian National Disability Insurance Scheme (NDIS) is an example of a personalised funding scheme that began full implementation in July 2016. It is presented as providing greater choice and control for people with lifelong disability in Australia. It is argued that the changes to the disability care sector that result from the NDIS will have profound impacts for the care sector and also the quality of care and well‐being of individuals with a disability. Once established, the NDIS will join similar schemes in the UK and Europe as one of the most extensive public service markets in the world in terms of numbers of clients, geographical spread, and potential for service innovation. This paper reports on a network analysis of service provider adaptation in two locations—providing early insight into the implementation challenges facing the NDIS and the reconstruction of the disability service market. It demonstrates that organisations are facing challenges in adapting to the new market context and seek advice about adaptation from a stratified set of sources.
In recent decades governments in industrialised nations worldwide have been embracing marketbased models for health and social care provision including the use of personalised budgets. The Australian National Disability Insurance Scheme (NDIS) which commenced full implementation in 2016 is an example of a personalised funding scheme which has involved substantial expansion of public funding in disability services. The scheme involves the creation of a competitive quasi market of publicly funded disability service providers who had previously been block funded and had historical practices of communication and collaborative working.
Research has shown that introducing or increasing competition can impact collaborative efforts between service providers. I am part of a team who have recently released a report based on qualitative interview data from disability service providers during the roll out of the NDIS to examine the effects of the introduction of a more competitive environment on collaborative working between providers who had historical relationships of working together. The data shows that while collaborative efforts were largely perceived to be continuing, there are signs of organisations shifting to more competitive relationships in the new quasi market. This shift has implications for care integration and care co-ordination, providing insight into how increasing competition between providers may affect care integration.
You can find the full report through the Centre for Social Impact here.
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.