The scheme was overwhelmed by autism cases with nowhere else to go. Creating new services for them is one of the pointiest issues in the review.
One in five children in Australia have disability or developmental concerns, according to the Australian Early Development Census.
It seems a staggering number. But it is one of the key statistics which explains why the National Disability Insurance Scheme – 10 years into its life – has exploded in its cost and reach, well beyond what was originally intended.
Confronting how best to assist that huge cohort of young Australians – whose disability or development concerns might range from everything from profound physical disability to mild learning or developmental problems – requires all our systems to work together: the NDIS, the health system more broadly and the education sector for starters.
The review of the National Disability Insurance Scheme released this week covers a multitude of complex issues going to the market structures, inefficiencies and complexities of the scheme. There are rorts and profit gouging in the system to be fixed; administrative mazes to be demolished; a labour force to be trained and better regulated.
But what happens to the kids it can, or cannot, help is perhaps one of the pointiest of the issues it has had to confront.
That’s because it involves confronting what isn’t in the NDIS, as much as what is.
The large cohort of children on the autism spectrum who have joined the NDIS in much larger than expected numbers meant that there has been considerable anxiety among parents that the review – conducted by one of the scheme’s original architects, Professor Bruce Bonyhady, and former public servant Lisa Paul – would seek to simply chuck them out of the scheme.
That’s meant a large part of the political task of NDIS Minister Bill Shorten this week has been to try to reassure them that won’t happen if they really need its services.
It is a tricky message because a lot of what the review has to say is about building up an ecosystem around the NDIS which will complement ity, but eventually return the scheme to one which was supposed to deal with - those people with the most severe intellectual, sensory, physical or psychosocial disabilities.
That is, politely speaking, direct a lot of the people who might now feel the only option they have is the NDIS to a range of services that don’t really exist at the moment, or only exist in a haphazard way.
You can announce all sorts of splendid new services. But while they remain hypothetical a group of people who have often been fighting to have the services they have won’t be moving anywhere. And that same group of people know just what sort of workforce shortages already exist and will be sceptical of an ability to fill them in the short term.
The advent of the NDIS saw state and local governments largely abandon the field of providing a lot of the services they once provided to people with disabilities.
The NDIS review aims to reverse that and make the systems work better together.
It talks of “foundational supports” – which might be a good description for the aficionados – but sounds pretty vague to the average punter.
The way things have developed in recent years, the experience of many parents is that if their child had developmental or disability issues, the only option was the NDIS.
This was not just because it provided financial support for the services they needed.
It has become the case that the demand for those services is such that you could only get an appointment to see a developmental specialist if you had been accepted into the NDIS.
Once you were in the NDIS, you really wanted to stay there for the same reason.
And that’s just in places where the services were geographically available. In regional and remote Australia, you might get approved to get financial support for those services, but there was no one to provide them.
Relieving that anxiety and changing those patterns of expectation and behaviour will be tricky.
The first thing that will need to happen is that the various levels of government – and different systems – will have to work properly together.
That starts with money.
The attraction to the states and territories of the NDIS was that the federal government agreed to cover the cost of its growth. That means the relative share of the states’ contribution to the national disability bill has shrunk over time.
The review says that by 2032, the states’ share of the cost will have shrunk to about 20 per cent.
Changing all the incentives in the scheme involves changing the way the cost of the scheme itself is shared, but also the way the costs of this new “ecosystem” of foundational supports and education-system supports are funded.
This week’s national cabinet meeting was therefore a huge early breakthrough in getting the NDIS back on track.
The states agreed to lift their contribution to the NDIS by 8 per cent a year instead of the current 4 per cent.
But particularly significant was the federal government’s agreement to pay for half the “foundational supports” which will be offered by state-based institutions and systems such as schools, early childhood and healthcare systems.
The idea is that if everyone is paying equal amounts of money towards the different parts of the system, the incentive to cost-shift will disappear.
But the sheer size of the issues seem daunting.
Pressure on schools
A lot of the pressure in future, it seems, will fall on the school system if the answer is to provide more support at a systemic level, rather than through individual packages through the NDIS.
Yet school teachers will tell you that they are hopelessly under-resourced to provide the sorts of extra help needed to make classrooms functional when there is such a large cohort of students with special needs.
We don’t hear much about the Gonski school funding model any more. But it is technically in place and is supposed to provide top-up funding based on the disability profile of a school.
But people will often say that the NDIS stops at the school gate, and there is simply not the support, nor the co-ordination to allow schools to take their place in that disability ecosystem that the review speaks of.
This is despite the fact that so many advocates emphasise the importance of keeping kids in the main school system if it is possible for them to be properly supported.
There is some sense, though, in using systems such as schools and early childhood centres to better deliver services. A small group of disparate individuals in a regional centre, for example, may have difficulty finding a service provider. A group of individuals connected by, say, a school may have a better chance of getting that support.
The NDIS is often described as having become the only lifeboat on the ocean for people with disabilities. It was also one of the most complex and ambitious bits of public policy in the world.