Stew, Landyn and Trixie

Stew, early 30s, is autistic, non-verbal and has attention deficit hyperactivity disorder (ADHD).

He lives with his parents, Landyn and Trixie, and has a support worker six hours a day, five days a week.

Trixie told the Royal Commission that Stew can read and understand, but he’s never spoken a sentence in his life.

‘He can’t communicate his needs so he has outbursts of frustration,’ she said.

Someone needs to remind Stew to wash himself and get dressed. He knows you’re not supposed to walk around naked, but at the same time he ‘doesn’t quite know’.

Stew’s not able to go into the community by himself. Once he was in a library pretending to scan books and the librarian called police.

The librarian told Trixie, ‘Having people like that in here puts people off coming into our library.’

Landyn said over the years Stew has been in all sorts of employment-ready programs.

‘He knows money can buy him chips, for instance, but he’d give you a $100 bill for a bucket of chips and then leave the room.’

Since his early teens, Stew has been taking antipsychotics and ADHD medication. The drugs calm him but because he can’t communicate, and won’t submit to blood tests, ‘it’s just roll the dice really,’ Trixie says.

Stew’s psychiatrist believes they’ve reached a point where there won’t be any positive change in Stew’s behaviour.

But the NDIA fails to recognise Stew’s disability is permanent.

‘We feel like the intractability and the permanency of his disability is something that the NDIS has to have some mechanism for dealing with,’ Trixie said.

‘At the moment, particularly with these behavioural support plans that we have to comply with … you have to always prove that he’s got this disability and that he will have this disability going forward.’

Each year the NDIA requires a new behaviour support plan because Stew takes ‘reportable drugs’. The plan costs more than $10,000 to prepare and involves multiple trips to doctors and therapists. Landyn said the plan gets ‘put in a drawer, ticked off’, but it’s not useful.

The NDIA wrongly believes Stew’s behaviour will improve because of the plan, and his reliance on medication will ‘fade out’.

‘We just find that so insulting,’ Trixie said. ‘It’s like saying we just put him on all these drugs. We have tried and tried and tried to get him off the drugs because they make him fat. He gets pimples and thrush in his mouth.’

The NDIA used to be ‘very individually focused and they used to listen’, but now it’s a constant fight. Small changes cost time and money.

‘In the complexity of it, it just becomes rules,’ Trixie said. ‘One time they just changed the rules about transport, and they totally slashed [Stew]’s budget. And we had to fight and get a review. And because we live rurally, transport is a critical issue.’

Landyn and Trixie said managing Stew’s NDIS plan is like running a small business.

Stew receives different supports and services from a large disability organisation. Landyn has to fill out the same paperwork each time they engage with a service because there is no centralised database. The billing is often indecipherable and they have to constantly query which service item relates to which service.

Trixie said they now regret keeping Stew at home for so long because of the damage it has done to their other children and the family. At times the family had to separate to keep Stew from physically harming his siblings.

‘His volatility and high needs skewed our family life in ways that we weren’t even really conscious of … It would have been really good if there was somebody who was experienced in disability who could have given us some guidance when [Stew] was young about what we would have to watch for, if some of the services provided, took into account the whole family.’