Addressing autism support disparity in regional areas

Siobhan Calafiore

Faced with a lack of services in Ballarat, Vicky Robinson has resorted to travelling to Melbourne to ensure her daughter receives the autism support she requires.

Rachel Richards, now eight years old, was diagnosed with autism at four.

“She is on the invisible end of the spectrum,” Ms Robinson said. “To look at, you wouldn’t know, but it was just that social delay, not interacting with peers.

“When she was first diagnosed we felt alone. There was no real understanding or information in Ballarat, so we sought services outside of Ballarat in the metro area.”

The family’s first point of contact was Amaze, Victoria’s peak body for people with autism and their families.

They offered support over the phone as well as travelled to Ballarat to do workshops, helping the family navigate the options available and through the National Disability Insurance Scheme. 

The family receives support from allied health professionals and a range of organisations, with a lot based in Melbourne, and the travelling to and from appointments can take a toll. 

“By the time we get to the appointment the child is exhausted before we actually get that intervention,” Ms Robinson said. 

“A lot of families (in Ballarat) are not aware of the support available. I’m constantly researching things to stay proactive for our family.”

To help families in regional areas, Amaze is running a series of free forums across Victoria including Ballarat.

The roadshow is funded by the state government as an immediate response to the 2017 parliamentary inquiry into autism, which identified regional areas were at serious disadvantage when accessing information and services.

A five-year Autism State Plan is in development, which will help address the disparity between metropolitan and regional areas.

Amaze chief executive officer Fiona Sharkie said autism was the biggest diagnostic group for the NDIS with almost one in three participants having autism.

“What came up very clearly (in the parliamentary inquiry) was in regional areas the lack of autism services,” Ms Sharkie said.

“So very often families, even in big centres like Ballarat, need to drive a long way to find a service and there are just not enough services on the ground.

“That’s going to get worse with the NDIS rolling out because people will have more funding support but not have places in which they can spend the money.”

The forums will include talks from experts in the fields of education, employment and the NDIS and a guest speaker with lived experience of autism. 

The roadshow will come to Ballarat on Wednesday and be held at the Mercure Ballarat Hotel and Convention Centre from 9am-3.30pm.