Choice, control and the NDIS – the findings

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

 

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

You can find a link to the report here

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

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

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

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

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

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

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.

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

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

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

TEETHING PROBLEMS?

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

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

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

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

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

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

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

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

Banner image: iStock

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