I have recently taken a little hiatus from blog posting recently as a result of an accident playing soccer that resulted in a broken hand. As it turns out, if you are right handed then breaking your right hand isn’t great for getting writing done (or pretty much anything else in life). I’m pretty confident I’m on the mend now, but it has been a frustrating few weeks.
Lucky then that the world of journal publications tends to move pretty slowly so although I’ve been out of writing action pieces have still been coming through into publication. A few of those pieces that have recently been published are on the topic of medical engagement.
The first paper is based on research done in the English National Health Service (NHS) a few years ago, written with Chris Ham, Peter Spurgeon and Iain Snelling and can be found here. The literature suggests that medical engagement is an important component of high performing health systems, although the NHS has traditionally struggled to engage doctors and has been characterised as a professional bureaucracy. This study explored the ways in which health care organisations structure and operate medical leadership processes to assess the degree to which professional bureaucracies still exist in the English NHS.
Drawing on the qualitative component of a research into medical leadership in nine case study sites, this paper reports on findings from over 150 interviews with doctors, general managers and nurses. In doing so, the authors focus specifically on the operation of medical leadership in nine different NHS hospitals. The paper finds that although concerted attention has been focussed on medical leadership and this has led to significant changes to organisational structures and the recruitment and training processes of doctors for leadership roles. There is a cadre of doctors that are substantially more engaged in the leadership of their organisations than previous research has found. Yet, this engagement has tended to only involve a small section of the overall medical workforce in practice, raising questions about the nature of medical engagement more broadly.
The second paper is written with a team that I have done Australian-based work on medical engagement with – Marie Bismark, Grant Phelps and Erwin Loh. This piece doesn’t present empirical data but is a think piece arguing that perspectives on medical management and leadership are in a time of transition, but there is much we still need to understand better. This paper explores some of the tensions and dilemmas inherent in understandings of medical management and leadership and can be found here.
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.
Last week we had our public launch with a debate titled ‘what makes us healthy’. The event was hosted by Julie McCrossin, and guest speakers included the Disability Discrimination Commissioner Alastair McEwin, performer Emily Dash, and journalist and appearance activist Carly Findlay, speaking about their personal experiences of health and happiness. It was a great launch and if you missed it there is a great write up of the event and the centre’s approach on the Power to Persuade site written by Celia Green and Zoe Aitken and you can find this here. Croakey also republished this piece with pictures of the event and some tweets from the audience here.
Co-lead for the CRE-DH, Professor Anne Kavanagh was busy in the run up to the event writing pieces for the Australian on Pauline Hanson’s suggestion that children with disabilities should be excluded from mainstream schools, link for this is here. Anne also did a piece for Pursuit on the new CRE-DH, which can be found here.
If you are looking for a research role there is a postdoctoral fellow in health inequities being advertised by the University of Sydney and you can find the advert here. Stay tuned for more updates about this exciting initiative.
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).
The National Disability Insurance Scheme (NDIS) is “on track in terms of costs”, according to a position paper released by the Productivity Commission this week. The report further stated that:
if implemented well, it will substantially improve the well-being of people with disability and Australians more generally.
But the Commission’s paper also expressed some significant concerns at the speed the scheme is being rolled out, and that this could undermine its overall effectiveness. The report highlighted a number of areas that are proving challenging for those accessing the scheme. It noted that such barriers to access are, in fact, contributing to keeping the costs on track.
As a result, the government asked the Productivity Commission to undertake an independent review into the overall costs of the scheme, its value for money and long-term sustainability. The full report is due by September.
The current position paper goes to great lengths to acknowledge the size of the challenge in delivering the NDIS. It argues that the
scale, pace and nature of the changes it is driving are unprecedented in Australia.
When fully implemented, the scheme will involve the delivery of individualised support to 475,000 people at a cost of A$22 billion per year.
There is no doubt the NDIS is complex, but the Commission finds that there is “extraordinary” commitment to the success and sustainability of the scheme. It notes that making the scheme work is not simply the job of the National Disability Insurance Agency (NDIA), but also that of government, participants, families and carers, providers and the community.
Based on the data collected, the Commission finds NDIS costs are broadly on track with the modelling of the NDIA. A greater number of children are entering the scheme than expected, leading to some cost pressures, but the report notes the NDIA is putting initiatives in place to help deal with these challenges.
The report also finds benefits of the NDIS becoming apparent, with many, but not all, NDIS participants receiving more disability support than previously and having more choice and control.
Problems with the scheme
Many people who are dissatisfied with the scheme have reported they couldn’t find care providers to deliver their funded and approved plans. This kind of under-utilisation of services is a factor contributing to keeping costs on track. Such findings are in line with recent independent research into consumer experiences of the scheme.
Overall the report finds there is insufficient flexibility in the NDIA’s operational budget and that money could be spent more in a way that reflects the insurance principles of the scheme, such as greater amounts of funding being invested in prevention and early intervention services.
The process of care planning needs greater attention. Pressure on the NDIA to get numbers of people on to the scheme means that the quality of the care planning processes have been decreased in some cases. This has caused “confusion for many participants about planning processes” and has resulted in poor outcomes for them.
There is a significant challenge in relation to the disability care workforce. The Commission estimates that one in five new jobs created in Australia in the next few years will need to be in the disability care sector. The report notes that current approaches to generating greater numbers of workers and providers are insufficient.
A range of responses required to address these include a more targeted approach to skilled migration, better market management, and allowing formal and informal carers to provide paid care and better price monitoring and regulation.
The interface between the NDIS and other disability and mainstream services has also proved problematic. There is a lack of clarity in terms of where the responsibilities of different levels of government lie and who should be providing which services. Some people with a disability have lost access to supports they used to get as state government disability services close down.
Need for political will
The Commission describes the roll-out to the full scheme as “highly ambitious” and expresses concern it risks not being implemented as intended. Indeed the speed of the NDIS roll-out is described as having “put the scheme’s success and financial sustainability at risk”.
The report concludes that if the scheme is to achieve its objectives there needs to be a
better balance between participant intake, the quality of plans, participant outcomes, and financial sustainability.
The NDIS is taking a number of steps to deal with these issues but the Commission “is unable to form a judgement on whether such a refocus can be achieved while also meeting the roll-out timetable”.
What all of this means is that we will need to see some enormous political will to enable the scheme to be supported to reach its full potential. This will likely involve some slowing of the timetable for implementation and some difficult work to deal with a number of the areas that have been identified as problematic. Whether the government has an appetite to see this through remains to be seen.
Last year I had the pleasure of being part of a panel discussion on commissioning and the community sector that was hosted by the New South Wales Council of Social Service. The panel was convened to try and support those working within the community sector to gain a better understanding of the concept of commissioning and the evidence base behind this. Given the focus on commissioning and contestability developed by the NSW government, there are a number within the sector who are keen to better understand what the implications of these reforms are for their operation.
Where commissioning reforms have taken place in other jurisdictions we have seen some significant challenges posed for those in the community sector. A report from the UK House of Commons Public Administration Select Committee found that there was a lack of clarity over working definitions of the concept of commissioning and this posed challenges for community organisations, particularly those who work across multiple government agencies. The report set out a number of areas where improvements might be made in these processes. The Third Sector Research Centre at the University of Birmingham also developed a number of case studies exploring the challenges that community organisations have encountered in commissioning relationships with governments and where some of the gaps in the evidence base lie.
NCOSS have continued to do work on this topic to develop resources for community organisations and have developed a series of information sheets. There are three resources in total that explore commissioning, the government and community sector role in these processes and the potential impact within the context of government funded community services sector in NSW. These are short and very accessible documents that provide a really helpful and accessible introduction to the concept and its role in the policy context. The three documents are:
At the newly launched Public Service Research Group one of the things we have been busy thinking about is the development of executive education and professional development courses. We see this as an important part of the way that we go about translating research evidence in a way that is useful to practice, promoting the impact of our work and supporting those who work in public service contexts.
All of our programs are intellectually-stimulating and delivered in a highly interactive format to ensure that learning is applicable within the workplace. Our programs can be delivered as intensive subjects over a few days or can be tailored to be ongoing programs (in an action learning form, for example) where participants are supported as they tackle real-life issues. Programs can be delivered as residential, campus-based or work-place based in any area of Australia and overseas. We work to an approach that encourages participants to bring their expertise to the learning experience and to combine this with that of others and our facilitators to generate actionable solutions.
We have just advertised the latest of these – a commissioning bootcamp – which is a two day programme designed for those who work in commissioning roles or in provider organisations who are being increasingly required to work within a commissioning environment. This is designed to bring together a small group who will work together with leading experts to address real-life challenges and find solutions. Ultimately the bootcamp aims to produce better understanding into the key issues faced by commissioners and providers and to develop useable tools and strategies that participants can apply within their work contexts.
At the end of the bootcamp, participants will:
Understand what a commissioning process entails and some of the tools available to improve these processes
Have an overview of the evidence for commissioning including the impacts it can produce and the factors which enable high quality commissioning
Understand the standards of high quality commissioning and how to apply them in their own organisational context
Have an insight into the different roles that partner organisations play in the commissioning process
Have an intermediate understanding of how to operate a commissioning approach
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.