Jules

‘As a person with a disability, and as an Indigenous person … quite often we are not actually treated as a person. We are just treated as someone who doesn't have a voice.’

Jules, early 50s, has spina bifida, progressive multiple sclerosis (MS), vision impairment and a genetic condition.

A few years ago, she was automatically transferred to the NDIS from the state government disability program.

Jules, her husband, an optic atrophy specialist and an MS specialist attended her first meeting with the local area coordinator.

‘Even before I got into the building, the wheelchair ramp was broken so my chair nearly flipped over. They didn't seem to think that was a problem,’ Jules told the Royal Commission. ‘I got to the front doors. The doors weren't automatic. They were massive glass doors. My husband had to open them to let me in. I went to use the lift, wheelchair barely fitted, so we had to go up separately.’

Jules said the receptionist ‘totally ignored [her]’ and spoke to her husband.

The planning meeting was adversarial, and the local area coordinator argued with both specialists.

The coordinator told the eye specialist that Jules didn’t need mobility orientation aids because she had glasses, and the MS specialist that Jules didn’t have progressive MS, was stable and able to work.

‘They were arguing about that and [the coordinator] goes, "Well, she can't have primary progressive because our computer doesn't have a check box for it.”’

The coordinator then told Jules she didn’t need a support worker because her husband could care for her.

Jules was clear her husband ‘couldn’t do it all’. The coordinator suggested Jules’s parents could help out.

‘By that time, we'd run out of time. We had got nowhere and I was in tears. By the time I left there I was suicidal. If I hadn't had anyone with me, I wouldn't have made it home.’

Jules made a formal complaint and the coordinator lost her job.

‘Training would have been better,’ Jules said. ‘She was ill-informed. She was let down by the system just as much as me.’

The next planning meeting was a lot better and the following year the NDIA placed Jules on the complex support needs pathway.

‘It was an amazing experience.’

But a short time later the support for her genetic condition was removed ‘because only kids get that and they grow out of it’.

‘I said, "I live this every day. This is part of my life."’

The following year Jules’s funding was cut.

‘[The coordinator] basically said to me that I didn't need the supports that I was given, that I was rorting the system.’

The coordinator suggested ‘five or six sessions’ with a physiotherapist ‘would fix [Jules’s] MS’. The coordinator also argued Jules shouldn’t be spending so much on her continence aids – ‘We’re in COVID. You’re not going anywhere. You’re not doing anything.’

Jules had asked for a mechanical lifter to help her get off the floor when she slips. The coordinator asked why she couldn’t just stay on the floor until the ambulance arrived. ‘They told me that that is not money well spent. They told me if they gave me what I needed, no-one else would get anything.’

Jules has made a complaint to the administrative tribunal.

‘They're watching every dollar and cent, but they will not apply common sense to these conversations … Every time I have to contact them my mental health goes down the toilet.’