Katy Jo and Sabine
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.
‘Money, time and emotions are wasted.’
Katy Jo is autistic and has cri du chat syndrome, a genetic disorder that causes intellectual and physical disability.
‘[She] is an amazing little girl,’ her mother Sabine told the Royal Commission. ‘We were told when she was diagnosed that she would never walk or communicate in any way. She can walk quite well. She communicates using a communication device.’
Katy Jo is in her fifth year at a specialist school.
‘I did sort of want her in a mainstream school. The schools around here weren’t that open to it because she is still in pads, not toilet trained yet … She’s hard work, basically. It’s going to be hard work to get her included.’
Katy Jo has had NDIS supports for three years. The first two years were ‘amazing’.
‘We had enough funding for all of her therapies, we had enough funding for the Saturday community access, which she really thrives on. But then the third year they cut her funding in half, so there wasn’t enough for her continence aids, it wasn’t enough for her therapies … Not too much at all.’
Sabine’s ‘biggest argument’ with the NDIS is about funding for Katy Jo’s talker, which costs less than $5,000.
‘They have said that’s not value for money. That’s the only way she can talk. That’s her voice! It needs to be replaced because it’s old technology. So it’s making her not want to use it at all, which is causing quite a few behaviour concerns because she can’t communicate.’
The NDIA said, ‘Why don’t you just get her an iPad?’
‘But this is a dedicated device. I’m not going to start again teaching her how to speak differently just because they don’t want to pay for the voice that she has got.’
In the past six months, as Katy Jo’s behaviours ‘have regressed’, the calls from the school have increased.
‘And it has been awful. The therapies are dropping off and she is going through puberty. So, if anything at the moment, we need more therapies … But we’re just not getting any support.’
Sabine has sent ‘countless reports’ from therapists validating Katy Jo’s needs.
‘I’ve got letters from the occupational therapist and the speech pathologist … And still NDIS were like, “Nope.” They’ve said no to everything … We’ve jumped through all the hoops.’
The agency also cut funds for a support worker to take Katy Jo to the shops or out for lunch, and classes to ‘teach cooking and social skills’ and manage money.
‘Everybody in this town knows her because of that community access. I don’t want her to fall through the cracks.’
‘Two years ago I would have been singing NDIS’s praises, because what they did for us then, it was such relief. And then for them to just cut it in half and leave us heartbroken.’
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.