Amelia and Carly
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.
Amelia lives with a genetic condition, autism and attention deficit hyperactivity disorder. She is non-verbal, has complex needs and requires continuous support. A couple of years ago, when Amelia was in her early teens, her mother Carly made the difficult decision to place her in out-of-home care. Carly explained to the Royal Commission that she needed to consider the wellbeing of her other daughter.
Since then, Amelia has moved 12 times.
Initially she was at a respite centre. The centre catered for different sexes and ages, and if staff considered Amelia at risk they moved her back and forth to a caravan park. This continued for 12 months. Amelia’s anxiety increased and her behaviour deteriorated. Sometimes Carly didn’t know where Amelia was.
One time Amelia’s finger was broken. Staff didn’t give her any pain relief or seek medical assistance. Carly asked the centre for case notes ‘but literally got no response’.
Fortunately, a stable place became available. Amelia settled down and was ‘very content and happy’. But it only lasted six months because of an issue with NDIS funding. Carly explained that because the NDIS does not fund supported independent living for children under 18, the provider accumulated a large debt.
A new provider was found, but after four days said they couldn’t continue. They told Carly ‘some of their workers had basically left because of [Amelia]’s behaviours’. She believes the unfamiliar staff caused ‘further regression and heightened behaviour’.
The provider gave Carly six hours’ notice, putting her family in ‘a position of crisis’.
Amelia came back to the family home with support from her special needs high school.
‘It’s like a family that school, really. They’ve got a very good understanding of disabilities, the family situation, the pressure it puts on families.’
The department asked Carly for her consent to move Amelia to another state but she refused ‘because it would be a completely unfamiliar environment to her’.
With nowhere else to go Amelia moved back with Carly, but her behaviour ‘was very disturbed, very heightened’. ‘I had to pack my whole house up into mine and [my younger daughter]’s rooms so things weren’t broken,’ she said.
Amelia refused to go to school, and when she was at home she refused assistance from support workers – she only wanted Carly. She was very anxious and upset and ‘definitely not the girl that left home’. Carly sent her youngest daughter, who was traumatised, to stay with the day care worker while she focused on Amelia.
After a while Amelia finally agreed to go to school but escaped to a neighbour’s house. Police unsuccessfully tried to drag her out of the house before ringing an ambulance to sedate her and take her to hospital. She was sedated on and off for five nights.
Carly said the hospital system was totally unprepared to treat a child with Amelia’s needs. The use of restraints was traumatic for Amelia and, rather than engage with her, staff stood back and watched. ‘Some of them seemed very unsure and unsafe.’
When Amelia was discharged she was placed with another provider. When the provider conducted a risk assessment a few weeks later, it showed the home wasn’t suitable for Amelia because of the extent of her behaviours. ‘The risk assessment should have been done prior to her moving in,’ Carly said.
With no alternative, Amelia returned to the respite centre. Carly feels ‘really uncomfortable’ about it, but ‘there is literally nowhere else … that will provide services … because of her age’.
As a result of the constant moving and insufficient funding, Amelia lost most of her allied health support. A physiotherapist saw Amelia at school which is the stable safe place in Amelia’s life. Carly believes other health professionals should follow suit.
‘Up until recently I’ve had it pushed back on me to have [Amelia] living at home
… I’ve had to really stand my ground,’ Carly said. She believes it is in the best interests of the whole family to see Amelia ‘finally settled’ outside the family home ‘in a safe stable environment’.
‘At one point she was really settled,’ Carly told us. She believes if it wasn’t for the funding issues, she might have remained settled.
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.