Damo and Orette
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Damo, late 20s, is autistic and lives with his parents.
Damo has had NDIS support for about five years. His first plan funded a work readiness course, transport there and back, support workers, occupational therapy and psychotherapy. Damo’s mother Orette said that with this level of care Damo made steady progress and his life skills improved.
In Damo’s second plan his funding was reduced by a third, without explanation.
His third plan was reduced further.
The family went to the Administrative Appeals Tribunal, and the NDIA capitulated on several points as the process got underway.
Around this time Damo was diagnosed with further health issues. He wasn’t well enough to use the additional funding he was asking for, so the family ended up ‘pulling the pin’ on their appeal.
Orette said that the government disability support service in place before the NDIS had much to recommend it.
‘They recognised that the integrity of the family was important. If we weren't together and sane enough to look after [Damo], then that burden was going to fall on the government. So they made sure that we had the help that we needed.’
Also, under that previous system the family worked with a case manager. Orette said she was ‘fantastic’.
‘She knew [Damo]. She got to know him over the years but she also knew the system and she knew the industry. So she was able to say, "Have you heard about this or did you know about this program or there is this thing coming up."’
There was less funding but they were able to spend it more effectively.
‘Now we get a lot of funds from the NDIS, but there is actually no professional guidance on the best way of using it, and I think that is criminal. I don't want to be responsible for all the money and not using it in the best way to help [Damo]. And it is a full-time job to try and find all that.’
Orette said that ‘every interaction with the NDIS has been a fight’, right from his first plan.
‘They gave us a very generous amount of money … and we were really, really happy with it. However, they put it in the wrong boxes and we couldn't use it. So [Damo] would have had the equivalent of 300 hours of therapy and very little community access.’
Orette assumed this would be simple to correct, but it wasn’t. It took months, as have all the other issues that followed.
At Damo’s most recent review, she explained to the NDIS planners that every item in Damo’s plan was critical.
‘I must admit, I was a bit surprised when they came back and didn't even give him half of what he had spent the previous year. But that is my expectation of the NDIS. I have a very low bar and they tend to meet that every single time,’ she said.
‘You sit there with a person, you tell them everything you need, but really their hidden agenda is what can we deny, what can we get away with, what is the least amount of money we can spend on this person.’
Orette has been advised to seek out cheaper services for Damo and to get family and friends to help provide them. The NDIA questions or dismisses reports from medical specialists, as if they are thought to be ‘in collusion to get money from the government’.
‘Really, this is not the way we would choose to get money from the government. If it was possible to have [Damo] not needing any help at all, that is what we would really rather have. But, you know, life hasn't dealt him that card.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.