Kaitlyn and Juliet
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.
Juliet’s daughter, Kaitlyn, has a number of disabilities that compromise her immune system. Kaitlyn is under five and also has trouble hearing and eating.
‘As I write this I sit in her room, day 21 of an [intensive care unit] ICU admission,’ Juliet told the Royal Commission. ‘I'm a new mum, in a crazy world of unknowns.’
Kaitlyn’s compromised immune system means viruses that cause colds in other children have put Kaitlyn in ICU six times. Travelling on public transport and attending day care increases the infection risk, so allied health professionals visit Kaitlyn at home.
‘We have spent the past 18 months arguing over the level of care she requires and the volume of assistance that NDIS should provide.’
Juliet said NDIA staff with ‘little to no training in health and disability’ were making decisions about the level of care Kaitlyn needs.
‘They continue to make rash decisions based on their own opinion rather than those of highly skilled medical staff at top hospitals in the country … If your child were unwell you would take them to a hospital, not to the NDIA for a diagnosis. Why is this any different?’
Juliet said the NDIA also demands that she support her application for funding by providing information on ‘insignificant areas of care’ in ‘minute detail’.
‘I go above and beyond to provide accurate details to get basic support to ensure my child is safe, [that] we get some respite, and that her development is as best as it can be. To be told that requests of extra physiotherapy is not “reasonable or necessary” when a medical team has advised it is, is ridiculous.’
She said the NDIA had ‘neglected the importance and value’ of her daughter’s medical team and ‘exploited the reference to "value for money" funding’.
‘They have caused intimidation and frustration whilst progressing reviews knowing my child is in an intensive care unit intubated.’
Juliet said that because her daughter’s conditions changed as she grew older, there was a constant need to review Kaitlyn’s care, which was ‘exhausting’.
‘How about we support her as much as we can, so she doesn't have to completely rely on the system?’
Juliet has complained to the Administrative Appeals Tribunal and to the NDIA, but said they have ‘not responded to the complaints and are now outside of their delegated timeframes for responses’.
‘I'm tired, I'm frustrated, but I'm determined to fight for the future of my child and to ensure this neglect, this exploitation of power is corrected.’
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.