Gambling on adequate support
28/04/2014
The disability support system remains under-resourced and inflexible, particularly in regional centres where people can be at the mercy of the ‘postcode lottery’. Kelly Vincent says shifting to a system that delivers true choice and control will not happen overnight, and it’s time for governments to practice what they preach.
Most 22 year olds are worried about things like making rent and establishing their careers. I’m not going to say that these things don’t worry Zia and Cyanne Westerman, but they do have other things on their mind.
They are twin sisters living with muscular dystrophy in the regional town of Whyalla, situated four hours’ drive from Adelaide in South Australia. They are both TAFE students. Zia is studying Professional Writing and Cyanne, Residential Drafting and Design.
In many respects, they are very typical young women, or at least they would like to be. However, the under-resourced and inflexible disability support system is proving to be a major barrier to this. Living in a regional centre makes it difficult to get adequate support workers for Zia and Cyanne, and when support is available they are given just one hour to assist both women to shower and dress, for example.
Cyanne and Zia are well and truly losing in what is often (not so affectionately) named the ‘postcode lottery’, meaning that where a person lives determines what support they receive. This situation is placing incredible stress on the sisters, and their mother, Jodie How, who does her best to fill in the gaps in her daughters’ paid support while also managing a back injury and other parenting duties.
The real tragedy in this situation, however, is twofold: firstly, the system is failing to recognise Zia and Cyanne’s individuality, forcing them to build their lives around sharing the scraps of support they receive. Still in the prime of youth, they face the very real prospect of moving into aged care just so they can receive adequate personal care support. This situation would surely squander the development of these two bright young women, and rob their community of two great assets.
The second tragedy of this situation, as I am sure some of you have already guessed, is that it is not unique. Time and time again, we see that it is only through persistent lobbying of the media, either through my office or as individuals, that people sometimes manage to avoid this same fate.
This reactionary approach of government is not only insulting to the average taxpayer, who has the right to see their money going toward effective and positive outcomes for those who need support, it flatly flies in the face of much of the rhetoric that the disability community has heard in the wake of governments signing up to the National Disability Insurance Scheme (NDIS).
On the one hand, we hear that governments are committed to the ideals of choice and control for people with disabilities. But on the other, we see cases like the Westermans’. We hear from various academic reports and workforce studies that Australia already does not have enough professional support workers to cope with the likely demand of the NDIS in metropolitan Australia, let alone in rural and regional areas. We also know that the massive paradigm shift from the current crisis-driven disability support system to one that is truly built on principles of – and delivers – true choice and control will not happen overnight, so it is time for governments to start practicing what they are preaching.
It is time to get serious about encouraging people to consider taking up disability support work as a carer, particularly in regions that are often beset by limited job opportunities.
It is time to realise that talk isn’t just cheap, it means little to those who need support now and cannot wait five years for the full roll out of the NDIS.
It is time to grasp that people with disabilities are taxpayers, and we are the experts in our own lives. Dignity for Disability will continue to lobby hard for the Westerman sisters until government puts our money where its mouth is.
This article originally appeared on the ABC’s Ramp Up.
