Bosco and Michele

Bosco, early 20s, has intellectual disability, behavioural and sensory disorders and ongoing health issues.

‘His behavioural disorders cause a lot of aggression,’ his mum Michele told the Royal Commission. ‘His sensory disorders cause aggression as well, so he doesn't cope living with other people, not even his own family.’

Until recently, Bosco couldn’t leave the house because his anxiety was so high.

Michele struggled to find and retain in-home therapists.

‘The supports didn’t really work in the home because of the environment.’

Bosco’s siblings became so frightened of him they would lock themselves in their rooms.

‘We were always worried that just them moving through the house or being too noisy would set him off,’ Michele said.

‘He doesn't want to hurt us. He doesn't mean to, but his impulse controls are not there. When he’s distressed, it’s the only way he can communicate. After he would hurt us, after he'd hurt himself, he would break down and cry and say sorry and just keep hugging us.’

Medication didn’t help.

‘We've tried so many medications, and there's only so much medication you can do. His environment plays a big factor in his behaviours.’

Bosco was frequently admitted to hospital because of his behaviours.

During his last admission, child protection and police became involved. They threatened to remove his siblings if Bosco remained living in the family home.

Bosco had to stay in hospital for several months while Michele tried to find somewhere for him to live. During that time, he was able to stay in his own room and he became calmer with no-one around.

‘That's when it all started to become quite clear that he could not handle the busy environment of living with other people. When he is in an environment which is only him and one other person supporting him, he can thrive.’

Bosco left hospital and moved to supported independent living (SIL) accommodation by himself.

Michele notified the NDIA of change of circumstances and asked to use some of Bosco’s core funding on accommodation. The NDIA agreed, indicating they would approve one-on-one SIL funding when they reviewed his plan.

But this didn’t happen.

The NDIA approved one-on-three funding, telling Michelle she didn’t provide enough evidence to justify one-on-one support.

‘The planners and the people that make the decisions for my son and what funding he's entitled to, they're not trained, they're not taking on the recommendation from the professionals,’ Michele said.

‘I wish they could just come and spend the day with my son and see how complex he is. Try to have a conversation with him and see the reaction. And then tell me that they would be willing to put other participants with him and put other participants at risk.’

Michele asked for an internal review. She uploaded almost 40 documents from medical practitioners and police, including photos of her and the children’s injuries.

The review panel upheld the original decision. Michele discovered the panel never saw the additional information.

She had to again apply for change of circumstances funding. Michele believes she shouldn’t have to go to the administrative tribunal to get the support Bosco needs.

‘We don't want him to have to be in one-on-one forever. It's just something that is required for at least a few years so he can learn functional communication, learn how to reduce his behaviours a bit better and meet some therapy goals. Unless he's able to meet his therapy goals, he won't be able to live with other people.’

Since Bosco’s been living in SIL accommodation with one-on-one support, he’s engaging with therapists and making progress.

His siblings are no longer scared of him.

‘He now comes home for dinner three nights a week and he goes grocery shopping. Finally got his dentist appointments and doctors appointments, which we haven't been able to get him to do for four years.’