Isha and Carra
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
Isha is in her teens and has epileptic encephalopathy, which involves speech problems, intellectual delay and seizures.
After Isha left school, her mum Carra applied for NDIS support.
‘I'm not used to asking for help. I'm used to having to do everything myself. So I kept trying to do everything myself. Everyone kept telling me I had to do everything myself so I believed them. And it was true. I did have to do everything myself even when the NDIS came in.’
Carra said she’s shocked how difficult it is to apply for an NDIS plan.
‘Unbelievably hard. And when you ask for help you're just minimised. You know, they haggle with you. It's like, well, haggling is just an indication that they don't believe that what you're asking for is actually a necessity. They're letting you know that they think you're just trying to get what you can for fun or something.’
For example, Carra asked for a support worker at night because taking care of Isha ‘with all her seizures and her disability’ is emotionally and physically exhausting.
‘I've had someone from the NDIS say … to me, “My 16-year-old wakes me up at night too.” And presumably she's read all the reports that I've given in. Presumably … she knows that she's not a typical 16-year-old that wakes you up at night. That she's having between three and seven seizures a night and you're having to bring her out of the seizures, give her emergency medication, give her oxygen.’
Recently the NDIS defunded all Isha’s activities.
‘[They] said she can just go to the local swimming pool and swim with the other kids. That's literally what they said in the plan. Oh well, she can't do that. She obviously can't do that if they read any of the reports. It's so frustrating.’
Carra asked the Administrative Appeals Tribunal to review Isha’s plan.
‘That's been horrible. Like they just keep asking for more reports … The lawyer for the NDIS would say, “Oh well my client wants these questions answered.” And I would say, “But those questions are answered in this report, that report, the other report and another report that you've got.” And he'd say, “Oh could you highlight those answers for us and send that in?” It's like, well, isn't that your job to read the reports that answer your questions? You asked for the reports!’
Carra said the NDIS should be talking with the health and education departments ‘so that a parent doesn't have to say the same thing over and over … and so there's an understanding between departments of what these child's needs are, what these parents’ needs are and what the plan is.’
‘You know there needs to be a plan, not just blaming.’
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.