A fortnight ago, Brain Injury Australia held its annual two-day conference in a Brisbane hospital and, you’d expect, there were presentations from the usual crowd. A world-leading (Aussie) neuro-scientist outlined how he’d used the world's most sophisticated imager to provide an incredibly detailed map of his own brain. A (British) team explained the physical and occupational methods they’re using to rehabilitate veterans of the war in Iraq and Afghanistan. Parents and carers discussed the numerous issues they’re facing, while people with head injuries got the chance to add their perspective.
We’d had the occasional insight; moments when you gasped “yes”, or “ah-ha”, but nothing to really disrupt the general atmosphere of civilised, academic, discourse marking the event.
Until the final session on day two.
This was the moment the conference heard from the Queensland representatives of the National Disability Insurance Scheme about how the scheme was going in that state. They presented a remarkably optimistic and positive picture about its initial implementation, admitting there’d been a few issues and problems accompanying the initial rollout of the scheme. Nevertheless, the manager insisted, self-reported satisfaction rates were well above 80 per cent.
Then the questions began, politely at first, but quickly taking on an edge of disbelief and anger.
The conference was an obviously unrepresentative sample, nevertheless the participants were exactly the sort of crowd you’d expect to be highly enthusiastic about the scheme. It was a group of engaged Australians keen to discover more about one of the major factors associated with disability yet, as the question and answer session went overtime, it became obvious that it had exposed some very serious fault-lines with the implementation of the scheme.
Today and tomorrow, International Day of Disability, hundreds of thousands of Australians will be sharing two very different stories with each other. One is positive, vibrant, and forward-looking: centred on the simple fact that we do now actually possess a National Disability Insurance Scheme, together with an authority that’s determined to roll it out effectively.
The other equally real narrative is, however, the reverse of the first. It's also about the introduction of the scheme, but this one portrays it as a story of missed opportunities, bureaucratic inertia and bizarre anomalies.
So which is true?
The answer is, of course, both, and this goes a large part of the way towards explaining the immense frustration. It’s not just parents and those who are meant to be recipients of the scheme who say they’re having problems, it’s also service providers and professionals working in the area who think it could be significantly improved.
Although the scheme, with its focus on individualised care, was not necessarily (despite claims to the contrary) a world-first, this approach to dealing with the challenges and difficulties faced by people with a disability offered a conceptual breakthrough. This alone has, every day, brought hope and relief to increasing numbers of people. And it's also been affordable – perhaps too much so. The National Disability Insurance Authority has been attacked for apparently treating some people with similar disabilities in different ways and also a lack of transparency in the way it has made decisions.
The authority has also been criticised for the opaque nature of other decision-making processes. This has seen significant contracts, some worth tens of millions of dollars, awarded without contest to incumbent providers. It's possible that this sort of "clubby" atmosphere would have inevitably developed, given that the authority has millions to give away and the existing service organisations were best placed to bid for these huge sums on offer. It's worth remembering, however, that this was not, the original intention of the scheme.
Perhaps the most acute impartial observer of the rollout is Roland Naufal of Disability Services Consulting. He emphasises that while the scheme may be terrific in 10 years time, “what I am concerned about today are the details”. He particularly singles out the issue of the government imposed the staffing cap on the National Disability Insurance Authority. “It was originally estimated the authority would need 10,000 people to administer the scheme, but it’s working today with just 3500 workers. This is a huge problem."
What's likely to come under pressure is the quality of the care plans that have been developed for individuals with a disability. The original theory was that there'd be the chance to spend time focusing on reviewing these individual care plans when they came up for review, after the huge backlog of new applicants had been enrolled in the scheme. Politicians, however, have insisted on the requirement to shrink the authority. This has almost inevitably torpedoed the possibility of proper reviews of individual plans at some later date.
The huge size of the sector means that inevitably its voice is growing. Websites concentrating on the provision of information about disability, including (my own) ability.news, means there is a renewed sense of things happening in this sector. Just how it develops from here, though, will depend very much on getting the scheme to work in the way it was originally designed.
Nicholas Stuart is a Canberra author and columnist