Santiago and Neva

‘The education system is not set up for intelligent children with ASD or intelligent children with behavioural issues.’

Neva is the mother of two autistic teenage boys. Santiago has level 3 autism spectrum disorder [ASD] and oppositional defiance disorder.

‘He was diagnosed when he was around three and so we immediately commenced behaviour support, occupational therapy, speech therapy,’ Neva told the Royal Commission.

After some early intervention, the family hired ‘psychology trained support workers’ to help.

‘They would not follow the support plans or didn’t have the skills to implement them. We saw an escalation in behaviour.’

When Santiago started primary school, he had a support worker to ‘try and keep him at school’.

‘But the school then wouldn’t let him integrate when he got elevated,’ Neva said. ‘When he was violent, they locked him into an area of the playground … We were essentially just presented with that as a management strategy.’

The school suspended Santiago.

‘He’s been through four schools now. His education has been quite disrupted since because of this very partial attendance.’

Santiago’s recent transition to high school ‘has been very difficult’.

‘When we asked the school how they were going to manage his behaviours if he escalated they couldn’t answer that. There was no proactive planning or consideration.’

Neva said that when Santiago became violent, ‘three teachers restrained him for 10 to 15 minutes … until he calmed down’.

‘That triggered significant behavioural changes in him.’

Santiago’s behaviours got worse. A psychologist report warned there was ‘a significant risk of harm to both students and his brother’.

‘His brother has been bitten on a regular basis, hit … We were being assaulted, verbal and physical assaults. He was injuring himself.’

Things with Santiago ‘hit D-Day’. He was ‘ripping the walls off’ to locked areas of the house, and was ‘really struggling, not learning and totally disengaged’.

The family was employing full-time support workers because the NDIA wouldn’t help. Santiago went into short-term respite while his plan was reviewed.

‘They told us that he wasn’t eligible for voluntary out-of-home care and that respite funding would cease.’

The NDIA told Neva it was ‘not a crisis agency’ and to call child protection services.

‘That’s very confronting. The whole process took us through to a decision a parent should never have to make, that we would relinquish our child if push came to shove.’

Her only other choice was to take him home ‘against medical advice’ and put her family in danger.

‘The child protection system I think is very rigid in that sense. It provides no protection for [Santiago] at all short of going down a legal pathway, a criminal pathway which is definitely not what we want.’

In the end, the department placed Santiago in temporary ‘voluntary out-of-home-care’. Neva still fears he will end up under state guardianship. She’s trying to get him complex support needs with the NDIS. All she wants is for him to have ‘appropriate supports’ so he can realise his potential.

‘To have him educated to his demonstrated intelligence, the HSC regular outcomes. He’s a smart kid.’

Recently Santiago was accepted into the local high school and now has a learning support team. His behaviours are improving.

‘It's still far from perfect … It would have been better to do it before he was so traumatised. But it has allowed us to step back from fighting the fires and go back to being a parent … and support him on that journey.’