Ry and Mary-Anne

Ry, in his late 30s, is autistic and has post-traumatic stress syndrome, anxiety and depression. He lives in an apartment subsidised by his mother Mary-Anne, who helps out in many other ways.

‘My role currently is support person/carer, facilitator, care coordinator, employer and overseer of [Ry]’s [NDIS] plan, fill-in carer and the only person who is advocating against the injustice of “the system” for [Ry]’s equal rights and his future in this disabled world,’ she told the Royal Commission.

Ry applied for the NDIS about six years ago and was approved. Mary-Anne said they were optimistic at first.

‘We believed all the publicity about how the scheme would help people with disabilities. I believed that [Ry] would have a better fulfilled life and we his family would not have to worry about him or his future. The publicity was full of promise and an answer to my prayers, or so I thought.’

The reality has been very different, with negative impacts on both Ry and Mary-Anne.

‘[Ry] is overweight and is anxious and angry all the time … Currently he is forgetting things and is very, very anxious due to the changes during the last three years with NDIS and his care. He constantly worries, as do I.’

She believes the way the NDIA has treated Ry constitutes abuse and neglect.

Each of Ry’s plans has been disappointing.

A planner put the first plan together, including a budget, with no input from Ry or Mary-Anne apart from an introductory phone call. Mary-Anne complained, the complaint got lost and she had to assemble the paperwork all over again.

A second plan was submitted without their approval or consent.

Subsequent plans have reduced Ry’s funding further.

‘I am forced to remain as his carer,’ said Mary-Anne.

A recent review of Ry’s plan resulted in a cut-and-paste from someone else’s plan. It even used their name instead of his. The reviewer has not looked at Ry’s previous plans or his needs and goals, ignores the views of medical specialists and ‘has not even read [Ry]’s accompanying reports’.

‘[The reviewer] has used coercive control by quoting rules and legislation that do not apply in [Ry]’s case …  The NDIA/S set deadlines for us and we are obligated to meet them or suffer the consequences, which are severe. But they seldom meet their legislated deadlines and dismiss them with impunity. This is victim blaming, abuse from a position of power and coercion.’

The reviewer advised Mary-Anne to file an appeal to the Administrative Appeals Tribunal if she was unhappy.

Mary-Anne said this process takes too long and was a not a solution for Ry.

‘What happens in the meantime?’ she asks.

Mary-Anne says she has observed recurring themes in the way the NDIA operates. There is a power imbalance, where the views of parents and medical specialists are simply dismissed. Staff making critical decisions are poorly trained and do not follow the agency’s own guidelines and rules. Lawyers and barristers are employed at great expense to fight against people with disability. And if you complain, your plan will be reduced.

‘This is a pattern of behaviour that the NDIA uses to enforce compliance on people with disabilities. It is abhorrent … I have never experienced this sense of helplessness before … The constant wearing down, one problem is solved and another arises. There is no end to it all.’