Timmie and Wilbur

Timmie, now in his early years of primary school, was about three when his father Wilbur realised he might be autistic.

Wilbur is a single parent, caring for Timmie and his other children with little family support. He applied to get Timmie into the NDIS early childhood early intervention (ECEI) program. His first application was refused, but he was successful the second time.

In his first ECEI plan Timmie received generous funding, including for extras such as cleaning and gardening, which Wilbur hadn’t asked for.

What he had asked for was a support worker to spend time with Timmie, helping him cook, use public transport and build other skills. He’d explained that as a single dad working full-time and with other kids to care for as well, his own opportunities for one-on-one sessions to help Timmie develop skills were limited.

Discussing Timmie’s next plan with the NDIS planner, Wilbur made the same point.

‘The one thing I impressed was the value of the support worker. I don’t care about the cleaning, I don’t care about the gardening … But the one thing that I’ve got to keep – I need to keep that support worker for [Timmie].’

The new plan did not provide funding for a support worker.

The NDIA told Wilbur it would only fund support workers where supports in the home environment were not available. It sent Wilbur policy documents to explain its position, but Wilbur thinks the NDIA misunderstands the policy.

‘I come back to the legislation in that it specifically states that the CEO and/or their delegate must take into account what is reasonable to expect of a family and for me the key word is reasonable. My question is, is it reasonable to … expect me to have to reduce my work hours or give up work? I don’t believe that that’s reasonable, for there to be such a financial impact on the wider family unit,’ he said.

‘I would love for someone to provide it to me in writing where the NDIS has an expectation that … I should take a financial burden and put my accommodation for my family at risk and my future sustainability and wellbeing at risk.’

For now Wilbur is paying the support worker himself.

‘I couldn’t cover all the hours, so [Timmie] only gets to see [the support worker] once a week and to save up the hours for a school holiday we’ve had to cancel the last three weeks.’

Timmie’s behaviour has deteriorated as a result of the reduced hours, and he has tried to self-harm.

Wilbur said that with the supports they could access through the earlier plan, Timmie was making good progress. He was becoming more capable and his social skills were improving.

‘Right now, all of that work is coming to a grinding halt,’ he said. ‘And if we lose that momentum now, it sticks. We never get it back.’

Wilbur recalled a young man he’d met with disorders much like Timmie’s. His ‘number one goal’ was to have a ‘life like everybody else’.

‘And had he had the things that I’m trying to build for my son now, he could have done that.’

But this young man never was able to access early intervention, and now depends on medication, therapeutic supports and ‘so many things’. It’s ‘not good value’, Wilbur said. And for the young man it’s ‘soul destroying’.

Wilbur wants Timmie’s story to be different.

‘I don’t want to see the same neglect from funders occur again into the future and the same mistakes getting made at such a young age, impacting people all the way through their life.’