Neill and Dervla
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.
Neill is in his 50s. He is autistic and has epilepsy.
‘Before mum died I made her a promise that I'd look after [Neill],’ his sister Dervla told the Royal Commission. ‘And we lived together happily for, you know, nearly 15 years.’
Dervla gave up her career to care for Neill in a public housing flat, where for years she made up for the shortfall in his support services.
‘I was chief cook and bottle-washer for everything and we did the best we could with what we had and we were really happy. It was tough, but he was happy. He was independent.’
One night several years ago, Neill had an epileptic seizure on the toilet and fell. He didn’t appear to be badly hurt that night, but in the morning Dervla took him to hospital.
‘That's where the doctor made the bad mistake and he said there was nothing wrong and he sent us home.’
The next night, Neill had another seizure on the toilet.
‘His neck, which was actually fractured, was bashing up against the cistern as he was convulsing. The fractured neck cut through his spinal cord.’
At the hospital, Neill’s heart stopped. Doctors resuscitated him but then told Dervla the hospital might not let the spinal injuries unit (SIU) treat him.
‘His life didn't have that same value. He was going to make no economic contribution to society. He was going to cost the system and, you know, the only place for people like that's a nursing home.’
Dervla eventually persuaded the hospital to admit Neill to the SIU, but after several months the hospital stopped his support services.
‘I'm dealing with these strangers who … don't know his life, who know nothing about him, who have subjective ideas, who work to a formula that they slot everyone into and I thought I had the right to say, "Well, no, I don't want that." And of course I did. So I was viewed as being obstructive.’
Dervla had been managing Neill’s finances to this point. After breaking his neck, Neill’s NDIS funding rose to nearly a million dollars. Dervla found a new wheelchair-accessible flat for the two of them so she could continue to care for him when he was discharged.
The hospital, however, applied to have a public guardian appointed – it didn’t consider Dervla ‘a suitable guardian’.
‘Shocking, terrible things [were] written about me,’ Dervla said.
After a tribunal appointed a public guardian, the hospital discharged Neill, against Dervla’s wishes, into specialist disability accommodation (SDA) ‘miles and miles away’.
‘I can't get there. I don't have my own transport.’
Dervla said there appears to be collusion between the hospital and the guardianship board, and between Neill’s public guardian and his service provider.
‘I've had that ability to honour that promise [to care for Neill] taken away from me … He's had so many infections since he's been there, I'm fearful. I'm fearful that he's going to die there without me. I want him back. I want him to be with his family.’
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.