Iain and Sherry
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.
‘[Iain] … was loved and his life was valued. And it has been a long time, but I still miss him very, very much, very, very much. And people with disabilities are important and they deserve to be happy and safe and cared for.’
Iain was born in the 1960s with brain damage.
‘They decided that they needed to induce my baby’s birth because we were both in a very critical way,’ his mother Sherry told the Royal Commission. ‘They told us, “Look, [Iain] has suffered severe brain damage during his birth process and he is going to be pretty severely disabled both physically and also intellectually.’
Iain developed slowly, and doctors told Sherry he would eventually need professional care.
‘I said, “No, no, he’ll stay with us for as long as we can,” you know. And I used to worry a lot about that.’
Iain lived at home and started school ‘surrounded by the most wonderful group of caring, loving, beautiful people’. Eventually, Sherry and her husband moved him into residential care.
‘With much fear and trepidation, we took him out on his first day, brand-new clothes and a whole brand-new wardrobe so he didn’t look like he was uncared for … It was four individual villas with permanent staff, well-trained, some nursing staff.’
Iain continued to go to school and ‘the care was just phenomenal’. ‘You could walk in at any time and [Iain] was happy and laughing and you could see he was perfectly cared for.’
During deinstitutionalisation in the 1980s and 90s, Iain moved into a smaller group home.
‘This was a very worrying time for us because we had heard about group homes, you know … but we had no choice.’
Sherry found a home with wheelchair access that was ‘bright and sunny’ with ‘fully-trained disability staff’. Iain settled in.
But then, said Sherry, the residential care system started to deteriorate.
‘[Service providers] started using a lot of casual, untrained staff. A lot of them, without being negative, a lot of them were from overseas and didn’t have good English, and that really worried me in terms of communication.’
One day after a weekend at home, a new support worker turned up to take Iain back to the group home.
‘I said, “Have you read [Iain’s] care program?” And he sort of looked at me and he said, “It’s only the first day I have been in the house.” And I said, “Okay … Well, I suggest you go back and you read his plan.”’
Sherry stressed to the worker that Iain, who was unable to sit unsupported, had to be supervised around water.
‘We said, “Never ever, ever leave him alone.”’
An hour later a manager at the group home called her. Iain had drowned. Sherry raced to the hospital.
‘[Iain] was surrounded by this wonderful team of nursing staff who didn’t leave us alone for one minute, who asked what his favourite song was. So we sang [it] until we could sing it no longer.’
Soon after, the doctor switched off his life support.
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.