Arnie

‘This is not a disability issue, this is a societal issue. It is not about my disability. It is about me living an active, involved and engaged life.’

Arnie, mid-60s, has quadriplegia and describes himself as ‘an enquirer, researcher and optimist’. He is university educated, has a busy career and represents Australia as an elite athlete.

About two years ago, Arnie’s disability support was automatically transferred to the NDIS.

There was no planning meeting or discussion with Arnie about his needs.

By the time Arnie discovered he was with the NDIS, ‘providers were already claiming funds against [his] plan’.

‘I was disabled the day NDIS generated my participant number. I have not been included in the conversation let alone empowered to lead those discussions.’

Arnie’s plan was inadequate and inflexible and didn’t consider his needs.

The NDIS appointed agency couldn’t provide support workers before 6 am, and there was a constant turnover of staff.

‘I don't want a different person coming into my life who has had no training … I don't want unskilled, I don't want numerous … I want a group of people that are happy to be here, happy to take direction.’

Arnie asked to self-manage his plan.

The NDIA refused but didn’t give him a reason.

‘I honestly cannot tell you why [they refused], other than they don't want to. Why can't I have self-management? I used to self-manage before NDIS.’

Arnie asked the NDIA to review the decision but they told him he would have to go to the Administrative Appeals Tribunal.

‘The NDIS promotes choice and control, but then does nothing about it. You end up in the tribunal.’

Arnie couldn’t find legal representation because of the long waiting lists, so he represented himself.

The appeals process has consumed his energy.

‘It is an onerous bureaucratic nightmare, a system fraught with jargon, misinformation, bullying, stress-filled playground antics.’

The NDIA has questioned Arnie’s capacity, honesty and integrity.

Arnie’s plan was suspended because of the appeal. After a few months he ran out of funds and all his supports stopped.

Arnie had to sleep in his chair because there were no support workers to hoist him in and out of bed. He used adult wipes to maintain some semblance of cleanliness. He changed his own suprapubic catheters out of necessity when they became blocked.

The NDIA offered an expedited plan if Arnie stopped the appeal, but he refused.

They then threatened his plan would be agency-managed irrespective of the outcome.

‘I was contesting my right to choose increased flexibility in a self-managed plan … I would be placed under agency management, the most restrictive and least flexible plan option. We would just end up going around in a complaints circle.’

Arnie wrote to the minister who said they could do nothing while the appeal was ongoing.

After four months without support, the tribunal asked the NDIA why they hadn’t used a provision in the Act to approve emergency funding for Arnie.

Arnie’s supports resumed.

Two months later, the NDIA conceded they were unable to find any record or reason to substantiate the decision to refuse self-management, but that ‘someone must have had a reason’.

The NDIA informed Arnie his plan would be agency-managed.

‘Each time we have this flow-down effect of someone else managing the money. They pay someone, who pays someone, who pays someone and at the end I receive support that is not value for money. That is exactly what agency-managed is.’

Arnie refuses to accept an agency-managed plan. He wants the flexibility to negotiate with support workers so he can live the life he wants.

‘Rather than listen to me and my aspirations and how we might overcome environmental barriers to my active community participation, NDIS has become my greatest all-pervasive disability.’