Titus, Kase and Nayeli

Titus has a rare genetic disorder. He is non-verbal and needs 24-hour support. He is in his late 20s and lives at home with his parents, Kase and Nayeli. For the past eight years he has attended a day care centre run by a not-for-profit provider.

Kase told the Royal Commission that when Titus first started at the centre it was ‘very well run’. They offered ‘good services, good training and people that cared.’

Since the introduction of the NDIS, things have changed. A number of staff lost their jobs, and those who remained have greatly increased workloads. A fortnightly schedule of different community access activities has been cancelled, and instead a support worker takes Titus to the park for the day.

Kase and Nayeli spoke about their concern that the NDIS has provided cover for people to profiteer, with little scrutiny or oversight to keep them in check. They gave an example of wanting to improve access for Titus at their house, a project that required three new wooden steps.

‘The quote we got from someone who worked with the NDIS was $10,000 to do that, and of course we didn't pay it. We got it done for $1,800 by somebody else that we got independently,’ said Nayeli.

Kase said that since they signed up to the NDIS, ‘almost every company [they’ve] dealt with has sent out fictitious invoices’. Invoices don’t provide details of what work has been done or a breakdown of costs. There are caseworkers who charge $25 for every email or phone call.

Many other people would just pay it, not even ask,’ Nayeli said.

‘The money is just flowing off the portal for people. Just self-enrichment. And I think we are smart enough to know that if these expenses aren't reined in then it's going to impact the NDIS overall.’

Kase described contacting the medical specialists Titus needs to see.

‘Each one you ring up, the first question they ask is not, "What do you need? Who has referred you?" It is, "How much money do you have in your budget?" That's the first question.’ Whatever the amount, that’s what they charge. ‘You know, I just find that offensive,’ Kase said.

Kase and Nayeli believe the NDIA should standardise invoices so they provide details about the work that has been done and the specific costs. But in their experience the NDIA is not interested in an oversight role.

‘If you go to the NDIA and you make a point to go, “This is happening, and this is happening,” the NDIA now takes the position of, "We can't do anything about this because this is a private company,"’ Kase said. But, he points out, the NDIS is funded by government. “Without our money they don't exist.”

The NDIA has also ended Kase and Nayeli’s access to respite care. The NDIS funds the person with disability but not their carers. ‘People can't get it as part of their package. You can't say, "I need respite for X number of weekends in a year" because it's – the NDIS is not for us,’ Nayeli explained. ‘This is leaving a lot of parents at their wit's end.’

Nayeli told the Royal Commission there are no answers to their greatest fear. ‘What happens to our kids when we die?’

‘I just cannot imagine what would happen to him if anything happened to us … If I got too old and I couldn't do anything … I would consider taking him with me because I wouldn't know where he was going, what would happen to him, what was on offer. I would have no level of comfort because there is nothing.’