Jacques and Addie
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.
Addie is mum to Jacques, an autistic teenager with an intellectual disability. Jacques also lives with a neuro-degenerative disease, epilepsy and uses a wheelchair. Addie and Jacques live in a small rural town.
Addie told the Royal Commission that one night a couple of years ago she saw blood in Jacques’s urine and suspected an infection.
Jacques was hospitalised for five days, in pain.
‘They had no idea where the pain was coming from … Tears were just rolling down his eyes. “Mummy stop it. Mummy stop it. Mummy stop it.”’
Addie tried to explain to the doctors the nature of Jacques’s disability and how it affects him. She told them – if he won’t talk to you, talk to me. But the doctors didn’t listen. One doctor called child protection officers, accusing her of lying about Jacques’s disability.
Addie insisted the doctors perform an ultrasound. They discovered a benign tumour blocking Jacques’s bladder.
Jacques has been unable to leave the house since Addie brought him home from hospital. He’s supported by the NDIS, but has been waiting nearly two years for funding to modify his home so he can manoeuvre his wheelchair.
‘There’s no way of getting Jacques from his bedroom to the shower. There’s no way of getting him into the shower in his wheelchair. I can’t even use his wheelchair in the house because of his height and proportion. They’re too wide for my doors.’
Addie said the COVID-19 lockdowns have made things worse by preventing his support staff from helping Jacques. He is too big for Addie to move by herself.
‘[Jacques] is literally a prisoner in his own home … [He] certainly can’t get out with his wheelchair. He is literally grounded to home … [Jacques] hasn’t seen the sun in 18 months.’
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.