Suspicions Raised Over Autism Advocacy Group Agenda

Luke Michael

The federal government has announced the establishment of an Autism Advisory Group, but suspicions have been raised that the group’s agenda is about excluding people with autism from the National Disability Insurance Scheme.

Social Services Minister Dan Tehan announced the formation of an Autism Advisory Group (AAG) on Tuesday, with the group’s purpose to provide advice and feedback to the National Disability Insurance Agency (NDIA).  

The AAG’s make-up will include the Co-operative Research Centre for Living with Autism, Amaze, Autistic Self-Advocacy Network, Australian Advisory Board on Autism Spectrum Disorder and the Australian Autism Alliance.

Tehan said the AAG demonstrated the NDIA’s “unequivocal commitment” to supporting people with autism.

“The establishment of the advisory group is consistent with the government’s commitment to a fact-based collaborative approach to issues related to autism and the [NDIS] and the NDIA’s unequivocal commitment to delivering quality outcomes for all people with autism, both children and adults,” Tehan said.

“The NDIA is committed to ensuring the NDIS is equitable, outcomes focused and, in the interests of all participants, financially sustainable.”

The AAG will be asked to discuss a number of issues including the increased prevalence of autism within the Australian population, and the best approach to delivering autism services for eligible NDIS participants and children who receive ECEI (Early Childhood Early Intervention) services.

The creation of the AAG comes amid fears that the NDIA has been working on a strategy to reduce the number of people with autism accessing the NDIS.

In May, it was confirmed that eligibility rules for people with autism under the NDIS are under review, leading to backlash from the sector.

This has led Bob Buckley, the convenor of Autism Aspergers Advocacy Australia (A4), to raise suspicions that the AAG’s agenda is about excluding people with autism from the NDIS.

Buckley told Pro Bono News they could not see the AAG being a positive development given the group’s agenda.

“Currently about 30 per cent of the people in the NDIS are autistic participants. It’s pretty clear [the NDIA] want to get it down to 20 per cent. They have said that in a number of places,” Buckley said.

“Cutting 30 per cent is really problematic and holding it at 20 per cent while the number of diagnoses grows is even more problematic. So it just seems like they’ve got an agenda, and we don’t know where it came from or why it exists.

“So without having proper discussions around this, we are suspicious that the agenda really is about excluding people with autism from the NDIS.”

Buckley also expressed disappointment that A4 was not consulted about the AAG.        

“I haven’t been involved in any of the discussions about who might be on the board or what subjects might be discussed, which is a bit disappointing because A4 is a disability representative organisation listed on the Department of Social Services website,” he said.

Buckley also expressed concerns that the composition of the AAG excluded important sections of the autism community, especially parents and families who provide most of the support for autistic people.

“A big challenge is that most people with autism are still young children. So getting representative voices for young children is always a challenge,” he said.

“Autism is quite a spectrum and if you’re going to have representation for autism you actually need a diversity of views and this group is not being constructed to do that.”

However in a statement provided to Pro Bono News, the Autistic Self Advocacy Network (ASAN) – a member of the AAG – said it would ensure the needs of the autism community were represented.   

“ASAN wants to ensure direct representation of Autistic needs and enhance the NDIAs understanding of the lived experience of autism so that the true functional impact of the condition can be understood,” it said.

“We also want to remind government of the costs of not investing in such a large cohort of people.

“Investment will ensure quality of life, economic participation, health and wellbeing, and inclusion in the Australian community for autistic people. We believe the NDIS has a role to play in the lives of all autistic people.”

Buckley said positive progress was only possible through a culture shift in the NDIA.

“The NDIA needs a major culture shift around taking input from its stakeholders. It really is in a very defensive mode at the moment,” he said.

“It only listens to defend itself. And in that state it’s really not going to make any positive progress.”