Vicky and Agnes
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.
Vicky has autism and epilepsy. She sleeps two to three hours a night and when she isn’t sleeping, her behaviour is challenging.
‘As you can imagine,’ her mother Agnes told the Royal Commission, ‘caring for her caused many issues towards my health and I was in need of much assistance.’
Agnes and Vicky’s father live apart, and Vicky was staying with her dad once a fortnight. One day, Agnes left her daughter with him and didn’t return to pick her up.
‘I did what no mother ever wants to do,’ Agnes told us. ‘I honestly felt that if I took my own daughter back, I would end up doing harm to myself.’
She didn’t always feel that way. Several years ago, Agnes was supported by a state-based disability system that gave her respite once a month.
‘This, combined with [Vicky’s] fortnightly visits to her father made the situation viable. [Vicky] was safe, happy and received the incoming stimuli and social interaction she needed; and I got my much needed sleep and rest to brave another fortnight.’
When the state government transferred its disability support service to a new service under the NDIS, Agnes lost access to respite care as well as other help from support workers.
‘We were reassured [by the previous service] that there would be no disruption to our services and that my daughter would not receive “anything less” than what we were already utilising.’
After the transfer to the new service, the situation ‘was sent spiralling out of control’. Agnes said the service, when planning Vicky’s care, failed to take into account her complex behaviour and need for respite care.
Vicky’s behaviour became more difficult and with little sleep and no respite, Agnes’s mental health deteriorated.
‘I was stuck in limbo because I refused to sign a contract which did not meet [Vicky’s] complex demands. Combined, these were an explosive combination.’
That’s when Agnes left Vicky with her father.
‘I could not face the possibility of going through what I had already undergone.’
Vicky’s father couldn’t cope either.
‘I finally received a call … from [family services] asking if I was able to pick up [Vicky] or she would need to be made a ward of the state. I immediately called NDIS to tell them I was her mother and I needed to be involved in planning so that I may get her back into my life, however, they would not even recognise me as her mother.’
Agnes discovered there’d been an oversight and the NDIS did not have her name and contact details. She was not considered Vicky’s guardian.
She said the NDIS also told her that if she was to care again for Vicky, she wouldn’t be entitled to the respite care she felt she needed. It also meant she’d have to quit her job.
Agnes said her options were to leave Vicky in state care, or agree to an NDIS plan that did not meet her or Vicky’s needs.
‘I no longer have my daughter, and I no longer have access to any type of planning for her. I don’t even know where she lives.’
Agnes has been allowed to speak to Vicky by video link once a week and hopes to be allowed to visit.
‘When people ask me of my experiences with NDIS, I respond that “NDIS ripped my family apart”, because that is the case.’
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.