The sustainability of the National Disability Insurance Scheme is in question with an unexpected boom in autism cases blowing out budget forecasts.
LEIGH SALES, PRESENTER: The National Disability Insurance Scheme was supposed to be the lasting legacy of the Gillard Government, with individualised care for every man, woman and child in need. But the sustainability of the program is already in question. In trial sites across the country, an unexpected boom in autism diagnoses has blown out the budget forecasts. In South Australia, almost half of those eligible for the NDIS are people on the autism spectrum. It's got administrators scrambling for a solution, as Alex Mann reports.
ALEX DEKIC, GORAN'S MOTHER: Goran loves the pool because he loves to be submerged in the water and I think it's part of the sensory feeling as well. It relaxes him quite a bit.
ALEX MANN, REPORTER: Keeping 11-year-old Goran Dekic relaxed and comfortable hasn't always been easy.
ALEX DEKIC: Goran was first diagnosed with high-functioning autism when he was about five and three quarters, and then later on, he also got diagnosed with ADHD. At that time the therapies we were accessing were speech therapy, occupational therapy and also some physio stuff on water and on land as well.
ALEX MANN: He received just 12 months of early intervention therapy before he turned seven and became too old to be eligible.
ALEX DEKIC: I was extremely disappointed to find that there was a cut off because to me, they don't grow out of autism at the age of seven. It's with them for life.
ALEX MANN: Today, Goran's care is almost fully funded, this time under the South Australian trial of the National Disability Insurance Scheme.
Goran is one of more than 5,000 children with an autism spectrum disorder who qualified for a funding package under the trial. That's double the number of children than was expected and it's resulted in huge cost blowouts for the NDIS.
ALEX DEKIC: I think there are more people on the spectrum out there than what the NDIS expected because my personal opinion is that perhaps there were people out there that weren't able to access any sort of funding and therefore weren't getting any therapies, and now that it has become available, those people have grabbed it.
ALEX MANN: That blowout came as no surprise to Barrie Elvish.
BARRIE ELVISH, CEO, AUTISM SA: We were anticipating it, but I don't believe that the authorities necessarily were and that could be purely through ignorance. I don't mean ignorance in terms of being stupid, but I just don't think they knew what was actually sitting out there bubbling away. We of course knew because it's our area of expertise.
ALEX MANN: Autism early intervention treatments can cost up to $80,000 a year and the massive increase in diagnoses has thrown the sustainability of the national scheme into doubt. Its administrators are now considering what level of treatment to fund.
BARRIE ELVISH: There's two choices. They can say we need to narrow who is eligible or we need to actually make sure we meet our commitments. And my view very strongly is they need to make sure they meet that commitments. Spending money, particularly with early intervention eventually solves the economy and the Australian taxpayers' funds later on. Delaying the expenditure now is not gonna make the problem go away. It's only gonna make it worse because the cost of supporting those children when they become adults is gonna increase. The money needs to be spent now.
ALEX MANN: Today 7.30 obtained a copy of the insurer's final report into early intervention treatments for kids with autism. It puts no cap on the cost of the treatment and recommends 20 hours of early intervention treatment per week with a review to be held after 12 months.
DAVID BOWEN, CEO, NATIONAL DISABILITY INSURANCE AGENCY: It could be as simple as access to a play therapy group and some family support right through to high-cost packages. We have children in this scheme with packages over $100,000. It's as broad as the diverse needs of children.
ALEX MANN: David Bowen says it's good news for parents of kids with autism. Despite the blowout in numbers, everyone eligible will still be covered.
DAVID BOWEN: The sustainability is not under threat at the moment. The scheme is still operating well within budget. The issue is that there has been no accompanying intervention strategy in which we can say these sorts of outcomes are expected over this period of time, and the ideal of course is that some children through that early intervention are able to exit the scheme, that they don't need enduring support.
ALEX MANN: Bob Buckley is one of the Government's own advisors. He's on a panel of experts that's been working for months with the NDIS on early intervention treatments. His adult son Kieran is on adult spectrum.
Bob Buckley fears the report's recommendations are too vague and that responsibility will fall on parents, not experts to determine which therapies are most appropriate.
BOB BUCKLEY, CONVENOR, AUTISM ASPERGERS ADVOCACY AUST.: Some families will go to great lengths to do the best they can to provide early intervention. Many parents will feel enormous guilt, stress and anxieties around not being able to meet best practice. I mean, these are clinical interventions and just expecting parents to provide clinical services on their kitchen table is really fairly unrealistic, but that's what is expected under those circumstances.
DAVID BOWEN: None of it should be taken as a one size fits all approach and I believe the criticism of that report has been around any suggestion that there be a one size fit all approach and the agency agrees with that. ... I think that it addresses the immediate concerns of parents of any child with a disability, including who have received a diagnosis of autism, that it gives them access to other parents, to information and to experts and rather than starting with a preconception about what sort of size dollar value package it is, it is the comfort of knowing that their child's individual needs will be met and supported by the National Disability Insurance Scheme.
ALEX MANN: Regardless, Goran will continue to get the treatment he needs. His mum Alex hopes that despite fears of a blowout, other kids will be just as lucky.
LEIGH SALES: Alex Mann reporting.