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Senator the Hon Linda Reynolds
Minister for the National Disability Insurance Scheme
Canberra ACT 2600
Dear Senator the Hon Linda Reynolds,
Subject: Government’s ongoing war on autistic Australian
Autism Aspergers Advocacy Australia (A4) deplores media reports (see Annex below) saying that “The Minister responsible for the National Disability Insurance Scheme has blamed an uptick of Australia’s aged, autistic and obese people for the ‘unsustainable’ rising costs of the service”. Your government’s war on autism is unacceptable. We complained about it before and were ignored.
Aged autistic people are one of the smallest subgroups in the NDIS: there were just 125 of them in June 2021, just 0.8% of 14K+ NDIS participants in that age group. While their funding level is higher than average for the NDIS, we doubt the numbers in this very small group will increase significantly for some time. We have not found NDIA reporting on obesity; we doubt the NDIS even has reliable data on obesity of NDIS participants.
Possibly, you meant either aged, autistic, obese or a combination of the three (‘or’, not ‘and’). We note that:
- the AAT ruled that obesity is not an eligible condition for NDIS participation.
- The NDIS was designed for people up to age 65 years; beyond that age, the aged care system should be more attractive, and people should prefer to transition to the aged care system, but that is not currently the case. Including the aged in the NDIS is a choice of the Coalition Government and was not part of the original NDIS costings.
- The NDIA refuses to understand or even properly discuss autism and the NDIS.
The cost of NDIS participants 65 years of age and over should be credited against age care support, but you don’t do that. That is dishonest economic practice. Similarly, obesity is a health issue and associated costs must be treated accordingly.
A4’s focus is autism spectrum disorder (ASD). Since the Coalition’s election to government in 2013, successive NDIS Ministers have refused to discuss support issues and poor outcomes for autistic Australians, with A4, the disability representative organisation (DRO) for autistic Australians recognised on the DSS national DRO webpage. The NDIA excludes A4 from its CEO Forum.
You are reported to have said “We’ve got many more young children with autism and early developmental (issues), who despite us providing early childhood intervention, are not leaving the scheme as we thought that they would”. The NDIA rejects expert advice about autism and tells families that the NDIS doesn’t fund evidence-based early intervention, that is EIBI/ABA programs, for autistic children. A4 has raised concerns that NDIS officials refuse to fund evidence-based early intervention for autistic children. The evidence is clear that autistic children who are denied best practice early intervention for their autism have substantially increased support needs through their lives. There is no reason to expect, after the NDIA denying them effective early intervention for their ASD, that they would leave NDIS Tier 3; this shows the NDIA inadequate understanding of ASD. Most autistic children are diagnosed after the NDIA’s (premature) cut off age for early intervention, so the NDIA simply denies autistic children effective early intervention. This is not “using insurance principles” and any consequent “cost blowout” is due to the NDIA, and not autistic people, their families and associates.
Some autistic children need to be NDIS Tier 3 participants because the NDIA has not implemented NDIS Tier 2 services that were part of the original NDIS design.
The NDIA cuts off early intervention for autistic children before half of them are even diagnosed. The NDIS also encourages people to be diagnosed with Developmental Delay or Global Developmental Delay instead of ASD which denies them access to early intervention for ASD. For them, early intervention doesn’t fail; it just never happens.
If you really were concerned about the future of autistics and the NDIS, you would meet recognised representatives of the autistic community and discuss the problems and what can be done to address them rather than attack this vulnerable group in the media.
Annex: recent media reports.
Convenor, Autism Aspergers Advocacy Australia (A4)
website: https://a4.org.au/Autism Aspergers Advocacy Australia, known as A4, is the national grassroots organisation advocating for autistic people, their families, carers and associates. A4 is internet based so that Australians anywhere can participate.
Note for politicians and bureaucrats – Autism Aspergers Advocacy Australia's policy on unanswered questions is available at https://a4.org.au/node/1419.
Interview on 6PR
The National Disability Insurance Scheme is back in the news again today, mainly because of the ever- increasing costs that the scheme is incurring, which are accelerating much faster than was anticipated just three months ago, prompting warnings from the Morrison Government that this rise in expenses is starting to become unsustainable.
Now, around about 472,000 Australians received some 2.15 billion in July through the NDIS. That's three per cent higher than estimated in financial reports published as recently as the start of July. Costs are also running about 18 per cent higher year on year, and that's driven by an increase of more than 70,000 participants.
Joining us this morning is the federal minister responsible for the National Disability Insurance Scheme, Senator Linda Reynolds. Senator, good morning.
Good morning, Liam, and it's good to be with you and to be discussing this most important of topics.
Yeah, no, it is incredibly important. Thank you for your time. But look, at these sorts of figures- and this is not the first time, as you know, these costs have come up. I mean, surely the scheme is not sustainable at these rates.
Well, look, Liam, when I came in as Minister, it was very clear to me that one of my major tasks was to do to not only improve the participants' experience with the NDIS, but also to put it on a more sustainable cost trajectory, because ultimately, this is taxpayers' money. And we have committed- the Federal Government has committed to fully fund the NDIS, but no taxpayer funded can be unlimited.
So, I've had three meetings with my state and territory counterparts in the last four months, and we're now working together. We've set up a taskforce to have a look at and to better understand what the cost drivers are. So, we've kicked up the bonnet and we're having a look to see why the costs are going up so quickly and even beyond, as you said, last month's projections so that we can make sure that this scheme endures for many generations to come.
Have you got any sort of idea where there could be a problem area? I mean, by that, I mean, is it a case of some of the providers pumping up their fees? Are people seeing- and I don't mean that everyone is exploiting it, but are there people exploiting these sorts of costs or is it new people coming in? I mean, 70,000 participants, Minister, surely, there's not an extra 70,000 people who are disabled- technically disabled in the last 12 months we didn't know about prior
Well, Liam, there's over four million Australians who do live with a disability. And this scheme was never intended for all four million. This was for those who had the most significant and permanent disability to provide them with the support so that they can live as independent a life as possible, they can work, they can study, they can socialise in the community. So that's what it was designed for.
But eligibility now has- in terms of who can come into the scheme, is quite unclear. So, for example, it wasn't designed to be a scheme for over 65s, so people could age into the scheme, but it was expected that they would leave the scheme and go into sort of the aged care in the health system.
And so, we've now got 16,500 participants over 65, and that's costing sort of nearly $2 billion a year. We've got over 3000 participants with dementia, and that's costing the scheme $600 million per annum. We've got many more young children with autism and early developmental delay who, despite us providing early childhood intervention, are not leaving the scheme as we thought that they would. So, there's a whole range- you know, people are trying to come into the scheme, you know, for example, because they're obese and they've got disabilities from that, from health conditions. So there's no one silver bullet, but I've certainly had a lot of reports of provider fraud, which is something that we're looking at with states and territories. So there's no silver bullet, which is why we now have got this taskforce to really understand why the costs are going up so quickly.
So, really the bottom line, let's face it, we're going to we're going to have to tighten up the eligibility rules, aren't we?
Well, look, we will. But again, we can't do that in isolation of making sure that there are community-based support. So, for example, when the scheme was established, the states and territories were supposed to maintain community based support for those with disability. But progressively, they've removed those supports. So the NDIS is now becoming the only option that people who should be supported in their communities- so that's also another pressure, for example, that we need to deal with. And we are now dealing with that, with states and territories. So there's a number of things that need to occur to take the pressure off of the NDIS so that there are other options in the health system, in the aged care system, and also in their communities.
See, that's the thing. When you combine those, you get a bit of a shiver down your spine. I mean, we just haven't got enough people in this country to fully fund those three things ongoing the way those costs are going. You've got aged care, you got Medicare, and NDIS.
Well, we have put, you know, billions of dollars extra into the aged care system; after the Aged Care Royal Commission, about another $17 billion. So there is money in- from the Federal Government in the aged care and the health system.
I know, but we can't keep printing it, can we? That's my point.
No, you're right. And again, this is going- just to give your listeners some idea of the size, when I came into the job just five months ago, we thought the NDIS would overtake the cost of Medicare in three years. But on the current rates, it'll surpass Medicare in less than two years.
So, yeah, that's to give people an idea of the size of the scheme. So this is not a Federal Government scheme. So the only way forward is the states and territories have to keep working with the Federal Government so that we can make the changes that are necessary across a wide range of areas.
So, it's a bit of an issue for you, isn't it, really? I mean, I don't want to get personal on this, but it does- it's a hard one, because if you've got to cut things like this back, everyone wants to do everything they can for everybody who's got a problem. But at the end of the day, you need someone to keep control of the costs. And it's going to eventually fall to you, Minister, to be the person with the razor.
The buck certainly does stop with me in terms of the management of the scheme. But I can't make any significant change to the scheme without the unanimous support of every state and every territory. So that is why I'm working so closely with them, because while we've- you know, combination of Liberal, Greens and Labor, we all want the scheme to survive.
[Talks over] Yes.
But the only way we can make sure that it does is by working together. And that's the bottom line.
Good luck with that, because with some of the premiers at the moment, you've got a bit of a Mad Hatter's Tea Party, haven't you?
Well, I've only got praise for my state and territory ministers, including actually Don Punch in Western Australia, who's been incredibly engaged in this, and very constructive. So on this issue, bipartisanship is needed, and that's exactly what I'm seeing from my state and territory counterparts, so I'm very encouraged by that.
That's good. We'll talk again, Minister, because obviously this will be ongoing and there'll need to be, as you say, decisions made. So we'll catch up with you and stay in touch. Thanks very much for your time this morning.
Thanks for your interest, Liam.
That's Minister Linda Reynolds, Minister for the National Disability Insurance Scheme on the program.