Autism and NDIS Sustainability
The problem isn’t that too many autistic people access the NDIS, it’s that too many need to.
My children are autistic participants of the NDIS. The federal government’s announcement to restrict access to the NDIS for autistic kids is frankly, disturbing.
I’ve spent my career in policy and law reform; I know the NDIS is untenable. And yes, because of the volume of autistic participants, restricting access might solve the budget issue. But it looks a lot like entrenching disadvantage.
Autistic people are a vulnerable group, disproportionately disadvantaged even among the wider disabled community. Autistic life expectancy is 20-36 years shorter than the non-disabled population. 75% do not complete education beyond year 12 and the unemployment rate is almost 8 times the rate of the general population. 50–70 per cent of autistic people experience co-existing mental health conditions. They experience worse outcomes, and unique challenges in accessing supports to begin with. Selecting to restrict NDIS access for this cohort is particularly harmful.
The announcement feels at minimum, premature. Australia’s first National Autism Strategy, and the National Roadmap to Improve the Health and Mental Health of Autistic People are being developed. These are key strategies and frameworks for autistic supports in Australia. I don’t see how the Government can commit to improving the lives of autistic people whilst simultaneously restricting their primary avenue to support.
Last month an ANU study suggested Australia’s high autism rates could be feasibly attributed to the availability of funding under the NDIS.
Whilst that is possible, the implications are offensive. Autistic people don’t get on the NDIS to profit. The money is auditable and restricted, allocated in categories to pay for supports required to live. Doctors can’t diagnose patients without basis, and the National Disability Insurance Agency – not a person’s diagnosis – dictates funding.
In reality, you can spend a lot of money to gain access to the NDIS. That’s not accounting for work leave required to facilitate the appointments and preparation. Parents typically spend several thousand dollars on consultations, assessments and reports to facilitate access to the NDIS. A portion of this is subsidised by Medicare, but still these costs can be prohibitive high.
Technically, you don’t have to spend a cent, but the wait times for developmental assessments in the public system are longer than a year, and early intervention is crucial.
We just finished our toddlers first NDIS planning meeting. It’s a dehumanising period of collating reports and evidence, and quantifying your child’s deficits. Then, for around 2 hours, you meet with a delegate of the NDIA, fill out another developmental assessment – this time, during the meeting when you’re already sick with nerves- and explain their impairments, and your inability to meet your child’s needs as a parent. And nothing is sacred; their access to therapy for the year depends on this. While my child has complex support needs, I love his autistic brain and I do not think there is something ‘wrong’ with him. But to get him funding, I’m forced to say otherwise. No parent subjects themselves and their kids to that unnecessarily. We’re not the reason the system isn’t working.
Autism can be profoundly disabling, but it isn’t always, and it shouldn’t preclude a good and rich life. Estimates vary but recent studies suggest that as many as 1 in 70 Australians are autistic. I agree with NDIS architect Professor Bruce Bonyhady; the prevalence of neurodivergence, developmental difference and delay should mean that our health, education and early education systems are equipped to accommodate their unique traits and needs. Instead, our experience and the findings of the Royal Commission has shown those systems are woefully inadequate and often harmful.
But if they were adequate, and if society and public places were inclusive, my family and many others could live without the NDIS.
And so the politicians are half right; the NDIS shouldn’t be the only lifeboat in the ocean. But it is. And until that changes, autistic people shouldn’t be prevented from accessing it. The point of the NDIS is that no one is left to drown.
Source:
https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Autism/autism/Report/section?id=committees%2Freportsen%2F024412%2F72470
https://www.autismspectrum.org.au/news/autism-prevalence-rate-up-by-an-estimated-40-to-1-in-70-people-11-07-2018