Indigo and Kerry
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.
Indigo is an autistic teenager with chronic disease and psychosocial disability.
She ‘very rarely’ leaves the family home because of her anxiety. ‘She has maybe one or two friends ... and the rest of the time it’s more at home with [me],’ said her mum, Kerry.
Indigo is now on her third NDIS plan. Each plan went to review due to insufficient funding which failed to capture her ‘real needs’. Kerry says the system isn’t set up to support people with disability.
‘You advocate your ass off, and you get all the reports you can so that you can tick all the boxes ... [to] try and meet what the system wants.’
During the COVID-19 pandemic, Indigo’s mental health and wellbeing went into decline. ‘COVID was sort of the catalyst that really brought everything to a head,’ she said.
When school restrictions began to lift, Indigo told her mother, ‘I still really want to learn, I’m just – I’m really struggling to actually go out.’
Kerry tried to arrange remote learning for her daughter, and the school initially agreed.
However, a few months later the school wrote to the family informing them ‘teachers already have enough work to do in the classroom’ and they’re ‘under no obligation to mark [Indigo’s] work’.
The family met with the school and advocated for adjustments such as letting Indigo use the library as a quiet ‘safe space’ to study during classes. They were told what they were asking for ‘wasn't reasonable’.
The school said Indigo already received ‘regular breaks’ when she needed to use the bathroom. ‘Apparently, that is classed as a sensory break ... that was [considered] time out,’ Kerry said.
The situation became ‘incredibly’ difficult as Kerry continually had to justify Indigo’s needs.
‘She is my daughter, she is my world. I love her ... [and] have to focus on her wellbeing. It is not realistic to expect her to go to school [any longer].’
Indigo has enrolled in a pilot education program that offers online schooling that focuses on the student’s level rather than their age. Kerry said ‘they understand that kids quite often learn at different paces with different subjects ... [and they] meet you where you are at.’
The family has now decided to focus on Indigo’s mental health and build her ‘capacity to explore and find herself and find her way in the world ... and build those skills so that she can do so safely’.
Indigo’s latest plan had been locked in for the next few years. Now that her support needs have ‘exponentially’ increased, Kerry will need to request another review.
Kerry is in the process of ‘collating all the evidence’ so that she can ‘put the strongest case forward’.
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.