Niky

‘The scam continues. The cash grab continues. Another dodgy person associated with the NDIS making money off me.’

Niky is autistic and lives with psychosocial disability, post-traumatic stress disorder (PTSD) and depression. She told the Royal Commission she has faced many ‘systemic barriers’ getting help for her disability, ‘because [she’s] moved around and homelessness and stuff’.

A few years ago, Niky had only just ’got a regular doctor’ and was ‘hormonally transitioning’ as a transgender person. She was struggling to find stable housing and said the crisis accommodation service was ‘crap to minorities’.

Niki applied for the NDIS through a mental health service provider.

‘They were a bloody great waste of time. They’ve screwed up so big with me … Some bastard wrote schizophrenic from the first day and I just felt infuriated with that.’

At the first meeting, all of Niky’s medical records were ignored.

‘I told her extensively, you know, PTSD, social affective disorder, you know, fancy word for social anxiety, clinical depression … Anyway, these are the documented things … the official stuff, and she’s like, “I don’t need it” … That was that.’

This left Niky without funding for almost a year.

The situation ‘dragged on’. One day, someone put down that Niky was ‘going to work towards a goal of employment’.

‘I’m like, “No, no, don’t put that. I’m on a pension. This is not a reality.”’

But no-one listened to Niky when she tried to raise these concerns.

Once, she visited the provider.

‘Not one single client in the waiting room. And they tried to prevent us from speaking to someone. They had nothing to do.’

Meanwhile, Niky said, housing services were treating her ‘exactly the same’.

‘They are treating people with disabilities and trauma like an inconvenience.’

When she finally got her first NDIS package, Niky exhausted all of her funds ‘trying to find out’ how to use it.

‘No one would tell me, and they treated me like I was an idiot. That’s why it took three-quarters of a year to get a support coordinator, who was a deadbeat. The NDIS hotline couldn’t even tell me what a support coordinator does … They ummed and ahhed. They know nothing. It’s a joke.’

Niky said her support coordinator never organised her essential supports. She ignored dozens of calls and emails, then ‘walked out’ on her.

All this time, she said, the provider was charging her for services that she didn’t have access to.

‘I need help getting to my counsellor. I engaged them for like a year or something. Not once did they drive me anywhere.’

Niky said the NDIS would not let her cancel her contract with the provider.

‘There is no accountability. No one is looking into these services. I tried to report fraud.’

Niky now has a new coordinator who’s trying to get her a better NDIS package.

‘Look, she’s not perfect, but she’s a thousand times better, and she actually knows autism. She understands.’

Niky said this is rare.

‘NDIS people don’t really understand trauma and anxiety. They’re meant to be experts … I think they think we’re going to recover and become productive members of society. But some people have lifelong conditions.’

The funding and housing struggles have exacerbated Niky’s ‘serious mental health issues’.

‘I’ve just been fighting these bastards that have denied me access to the things they’re meant to give me. I just want to get the hell on with my life.’