Lillee

Lillee is in her 30s and has autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), bipolar disorder, post-traumatic stress disorder, obsessive-compulsive disorder (OCD) and anxiety.

Lillee is also a single mother of several children, in primary and high school, who also have disability.

‘We all have diagnoses from ASD, ADHD, anxiety, depression, OCD, bipolar … So we've got quite a lot going on in the house.’

Lillee described for the Royal Commission a recent, fairly typical, day.

‘The other day [one child], she decided to leave the school and sit just near the road … so then we have to go collect her. So [another child] was holding everyone hostage at school. He was outside throwing everything, whatever he could get his hands on … so then I have to get him ... I'll do that meltdown, that meltdown, and then a lot of the older kids, and so, like, it's just a constant battle where I don't actually get time to work on myself because I'm constantly stretched.’

Lillee relies on the NDIS, but struggles to get all the support her family needs.

‘All the reporting, getting all documentations for NDIS … that is quite exhausting and time consuming because I have to do that [for each of the children] … I was doing that with OTs, psychologists, speech therapists, dieticians, like everything. And I got all that information and all the reports were saying, “Yes, the children need this amount of support, 100 per cent,” and then we'd give it to NDIS and they are like, “Well, sorry, we don't agree.”’

Lillee said the NDIS is funding one support worker for the family, despite doctors saying one child alone needs round-the-clock support.

‘So, if I was to say this is what each individual child needs, we are not even close to getting that help or support.’

Lillee said when she asked for respite care for herself, an NDIS officer told her, ‘All your children go to school, that's your time, respite time.’

‘Whereas some days I don't even get a second because there are so many meltdowns … I mean, I am trying to do it because they keep saying, “It's your parental role,” so I kind of feel shamed into going, “Well, I should be doing all of this.”’

Lillee said without the supports she needs, she recently ‘turned to alcohol’. To control her drinking, she and her support worker asked the NDIS to fund Lillee’s rehabilitation treatment.

‘We checked with one person and they said it was okay. They have got to go through so many different channels to get the money paid to them, so NDIS were very well aware of what I was doing and they approved it and paid for it.’

Halfway through the rehabilitation, an NDIS officer called to tell Lillee they considered her to be on a ‘holiday’ and the NDIS was withdrawing that funding. Lillee was left with the rehabilitation bill.

The NDIS now manages Lillee’s plan so she doesn’t ‘overspend’ again.

‘I kind of got punished for an error that they had made.’

Lillee doesn’t think the NDIS understands her circumstances.

‘I personally feel that me sitting here and saying all this stuff really doesn't give half of the picture that's in the house, you know, right now,’ Lillee told the Royal Commission. ‘It would be really nice, you know, if someone came out from NDIS and did the review or revision in situations like this so that they can kind of have an understanding of what's actually going on.’