Choice, control and the NDIS: Service users’ experiences of the National Disability Insurance Scheme

Today's post reminds us of the human impact of decisions made by government, and the importance of giving all citizens a voice. Deb Warr, Helen Dickinson and Sue Olney, together with Jen Hargrave, Amber Karanikolas, Vas Kasidis, Georgia Katsikis, Jasmine Ozge, Dave Peters, Cina Wheeler and Michelle Wilcox, have recently completed a participatory research project that examines service users' experiences of navigating the NDIS. The study was funded by the Melbourne Social Equity Institute.

The National Disability Insurance Scheme (NDIS) is the most significant reform of disability services in Australia in a generation. The scheme 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. Given the scheme’s promise to ‘support a better life for hundreds of thousands of Australians with a significant and permanent disability and their families and carers', we believe it is crucial to understand the degree to which its objectives and principles are being achieved in practice from the perspective of service users.

We've recently completed a study that explores the experiences of people living with disabilities, and family members providing care and support to people with disabilities, in the Barwon NDIS trial site in Victoria. Our research team included university-based researchers with expertise in social research, policy research and analysis and participatory methodologies, and community researchers with disabilities who brought a broad range of work and life experience to their research roles. We conducted 42 interviews for the study, with people with disabilities in the NDIS (n=26), and parents or adult children caring for people with disabilities in the NDIS (n=16). Our findings shed light on the progress of the NDIS towards giving people with disabilities more choice and control over their care; making the funding and organising of disability services less complex and more efficient; and promoting equity of access to services and support.

The data we collected cannot definitively tell us whether the NDIS is improving access to services for people with disabilities and carers. It does, however, offer 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.

A report on our findings will be launched in Melbourne on 24 May 2017. While we acknowledge the benefits of reform of disability services in Australia, we also acknowledge the barriers some people with disabilities face in exercising choice in a contestable, client-driven system. It is important for policy makers and practitioners to recognise the implications of this, including how it fits with other values that promote the safety, well-being, respect and dignity of people living with disability. In this study, we deliberately adopted a participatory research approach to involve people with disabilities in designing the study, gathering and interpreting data, and writing up and presenting the findings. We believe the combination of our individual team members’ strengths has produced rich and nuanced findings about service user’s experiences of the NDIS to inform both policy and practice.

You can register to attend the launch of the project report on 24 May 2017 here.

Power to Persuade