Andreas and Lois

‘My worry is children like [Andreas], who is in a government system already with child protection. Who is looking out for their NDIS money? Who’s making sure that it’s actually going to them and making sure it’s not just people, you know, taking profits for things that they haven’t done?’

Andreas, almost 10, is autistic and has Down syndrome. He’s been living with his grandmother Lois for about a year. Prior to this he lived in a different state with his mum, and then with foster carers.

Andreas’s mum has ‘some serious drug issues’ and over the years all of his siblings have come to live with Lois.

Lois said things are complicated with Andreas because she has to deal with child protection, who are his guardians, and the NDIS.

‘The [NDIS] budget that he got was a huge budget on paper but when you looked into it there was only a few thousand for OT [occupational therapy], a few thousand for speech therapy. The bulk of the money was for respite care, which isn’t what [Andreas] needs … He actually needs the help.’

Lois believes Andreas needs therapy to address his trauma and other mental health issues. But the NDIS planner refused to listen to her and didn’t respect her point of view. She feels the planner saw ‘child protection’ and ‘drug addict’ and made assumptions that she couldn’t be trusted and was ‘trying to get something for nothing’.

Child protection ‘don’t want to involve her at all’, Lois said, and because of this no-one is keeping an eye on the services the NDIS have funded.

‘They’re very distant to the whole thing and don’t really care too much … but they’re the ones with all the say. They’re the ones signing at the end of the day for anything.’

Child protection accidentally copied Lois on some emails and she discovered a number of therapists and respite services were charging for services they weren’t providing.

‘I made several complaints and I was basically ignored. It was, like, it doesn’t matter. It’s government money, anyway. But the way I see it, it’s there to help [Andreas], who has a disability, has a lot of things going on in his life, didn’t get the opportunity as a little person to have the services he needed.’

Lois asked to be listed on Andreas’s NDIS plan so she could oversee and audit the invoices coming in, but child protection refused.

Lois has asked child protection if she can become Andreas’s guardian but they’ve said no. They were willing to transfer guardianship to the child protection department in the state Lois lives, but the department refused.

Since living with Lois and his siblings, Andreas has started speaking.

‘Just spending time with people, being read to, talked to, you know, all the things that normally would happen in a family, he’s come along so far. And I just think that if he actually had all the services that were offered to children in his situation, the potential for [Andreas] to make him independent or to maybe have a job or to be able to read a bus timetable … those basic skills, I think, would be there,’ she said.

‘It’s sad that he missed out on any early intervention and things like that when he was young because of his mum, but now it’s sad that he’s missing out on it because he’s caught up in a different system.’