A vision of equality and dignity inspired the National Disability Insurance Scheme, which was introduced in Australia on the 1st July 2013. Developed by the amazing people with disabilities, family members and supporters, moulded by the Productivity Commission, and finally embraced by the Australian community and parliament, the NDIS is a major social reform that offers people with disabilities the chance to move forward, claim their rightful place in society and live out their potential.
Community supports for people with disabilities evolved over many hundreds of years, reflecting attitudes to difference and the social systems for managing poverty. It was only in the 1970s that Australia saw large institutions developed in the early years of the colony begin to close. For many people, life in the institution was replaced by life on the streets, or a regimen in group homes, which replicated institutional life. It took many years for governments to realise that despite being housed in the community, people with disabilities were often not part of the community, or able to achieve their goals and potential.
An adequately resourced support system based on the individual needs and aspirations of Australia’s people with disabilities, whether they be physical, intellectual or psycho-social, has taken nearly 50 years to establish and will probably take even more time to fully implement and consolidate.
Prior to the NDIS, formal supports for people with disabilities were fragmented, poorly funded, and inequitable, based firmly on an outdated welfare model. The NDIS as proposed turned this on its head, promising a national, universal system allowing people with disabilities themselves choice and control over their services — what is needed, and how, when and where it is provided. This vision is clearly alive, even while the reality is very much a mixed bag.
My personal experience during the first 18 months of involvement with the NDIS was frustrating and particularly deflating for someone who had written submissions, emailed politicians and understood the potential of the scheme. My only contact seemed to be with an immovable, impossible-to-navigate bureaucracy determined to stand in the way of me receiving any support I was promised.
I’m now in my second year as a part of the scheme, and the NDIS is beginning to offer me the sort of transformative support originally envisaged. ‘Small’ things, such as access to the support services I need for a few days holiday (something that hasn’t been possible since I’ve been in a wheelchair); and ‘big things’, which will change my life by giving me the opportunity to live in an apartment adapted for my needs.
Even while I celebrate these changes for my life, I am acutely aware that I am one of the lucky ones. Not everyone will enjoy such life-changing opportunities. Benefitting from the scheme depends on who and where you are, and where you started from in the system. As an educated person living in an urban area, I am in pole position. Despite this, it wasn’t until my second plan was done that I obtained significant benefits in my life. By this time, I had a supportive and knowledgeable team around me, knew what to ask for, and what would lead to tangible benefits.
'Even while I celebrate these changes for my life, I am acutely aware that I am one of the lucky ones. Not everyone will enjoy such life-changing opportunities.'
Unfortunately, many people are unable to get access to the NDIS at all. There is also great inequality among those who become NDIS participants.
A submission from People with Disability Australia to the Tune Review stated: 'There is an emerging and troubling picture that some people get good plans while others, particularly from marginalised groups or communities are left with poor quality plans, with limited access to supports and services that are included in their plans.'
There is much to criticise about the current operation of the NDIS. Most prominently is the failure of the scheme to live up to its potential as a universal, accessible and coherent service system able to decrease disadvantage among the lives of people with disabilities, particularly those whose disability intersects with broader social disadvantage.
I remain hopeful that a proactive focus on access and equity, along with a determination to rid the organisation of unnecessary regulations and bureaucracy will see the NDIS take its place among the great Australian social reforms.
Helen Burt has worked for over 30 years in the community sector, mostly in faith-based organisations. In that time her roles have included program development, policy work and management. Due to a progressive illness, Helen now uses NDIS services and at times undertakes some advocacy around disability-related issues.
She will be presenting at a workshop titled, Advancing Dignity and Equality within the Framework of the NDIS, together with Anne Kirwan, CEO of CatholicCare Canberra and Goulburn, at the upcoming national Catholic Social Services Conference, in Melbourne from 26-28 February.
Main image: Woman in her home, using crutches. Her dog is stretching behind her. (Getty images/jacobia dahm)