Disability Rights, the NDIS and the Need for Law Reform

In today's post, Amber Karanikolas explains tensions between the National Disability Insurance Scheme - a system that aims to facilitate choice and control for people with disability - and the socio-legal conception of disability that perceives people with disability as legitimate subjects of coercive medical intervention. Noting that competing notions of political rights, autonomy, agency, and the role of the state often play out in the form of social policy reform, she argues that the creation of the NDIS could be a starting point for new claims and calls for legislative activity in the area of disability law. 

The National Disability Insurance Scheme (NDIS) is often described as the most significant reform to disability services in Australia in a generation, or indeed one of the biggest social reforms in Australia since Medicare.

The NDIS is based on the premise that each individual’s support needs are different, and that eligible people with disability should be able to exercise choice and control over the services and support they receive through directing their own individual support packages of funding. Although sharing similar features to direct payments in the UK and other individualised disability services systems, the NDIS is often described as the only national scheme of its kind, and is generating much attention internationally.

With aims of achieving ‘choice and control’, the NDIS is premised on a social understanding or ‘model’ of disability. This is reflected in the National Disability Insurance Scheme Act 2013 (Cth), which outlines that part of the National Disability Insurance Agency’s (NDIA) general functions, along with delivering the NDIS, are to build community awareness of disabilities and the ‘social contributors’ to disabilities. Additionally, the NDIS Act 2013 (Cth) gives effect to obligations Australia has under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), to which Australia became a signatory in 2008.As the NDIS is informed by a human rights framework and advances a social understanding of disability in which notions of agency, individualism and choice are centred, there are many areas of law and policy governing the lives of people with disability that are inconsistent with the philosophy of the NDIS. In fact, they are arguably based on very different understandings and conceptualisations of disability.

For example, in Australia, where women and girls with disabilities remain an extremely underrepresented and marginalised group, there are no laws prohibiting the forced sterilisation of women with disabilities, or children. Under law, only the Family Court or a guardianship tribunal may authorise the irreversible medical procedure. However anecdotal evidence suggests unauthorised non-therapeutic and forced sterilisation remains common; however, there little is known about the extent of the practice.

Despite the position of international human rights law and monitoring bodies, Australian has consistently taken the view that there remain instances in which forced sterilisation ought to be legally permissible. Although the UNCRPD has the effect that an individual's right to decision-making cannot be substituted by the decision-making of a third party, Australia made reservations to such provisions at the time it entered into the CRPD.

Since 2005, treaty monitoring bodies have made multiple recommendations that the Australian Government enact legislation prohibiting the use of sterilisation of children with disabilities, and of adults with disabilities in the absence of consent.

Under this current arrangement, people with disability (most often women and girls with disability), face a socio-legal conception of disability that impinges on their decisional autonomy and reproductive self-determination and that perceives them as the legitimate subjects of coercive medical intervention. However, there is a stark contrast between this approach, and a system that aims to facilitate their choice, control and economic and social participation on the other.

In the wake of Australia’s ratification of the UNCRPD, there were consistent pushes for policy change in order to raise the living standards of people with disability in Australia and to reflect the rights framework established therein. However, the $22 billion NDIS represents an important commitment at the domestic level to many of the principles of the UNCRPD.

This is just but one area of the law which, on its face, would appear inconsistent with the philosophy of the NDIS and its conceptualisation of disability – that people with disability have choice, control, that they are unique individuals in their own right, and have a say what happens in their lives.

Although it is worth noting that such inconsistencies and tensions in legislation and policy are not necessarily unusual, (and that competing notions of political rights, autonomy, agency, and the role of the state often play out in the form of social policy reform); the creation of the NDIS provides an important starting point from which we might now be able to make new claims and calls for legislative activity in the area of disability law.

About the author

Amber Karanikolas BA (Hons) LLB was a community researcher on the Choice Control and the NDIS research project at the University of Melbourne.