Cesar and Henrietta
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.
‘This was our child and yes, he had a disability, but he was still a person and he still had rights and they ignored it … He ended up dying from the very thing that we said was happening.’
Henrietta’s son, Cesar, had an intellectual disability, bipolar disorder, epilepsy and schizoaffective disorder.
He was born nearly 30 years ago with a hole in his heart.
‘We knew something wasn’t quite right,’ Henrietta told the Royal Commission. ‘He didn’t reach any of his milestones.’
Cesar didn’t walk or talk until he was four.
‘Then we actually saw full-blown seizure activity and then, of course, he went backwards, so even further.’
Henrietta said the seizures, and the drugs he was given to control them, sparked other disorders.
‘So, basically, that’s where it started – when he was about 14, I believe.’
Cesar was frequently admitted to a hospital mental health unit. The doctors told Henrietta that, because his condition was ‘medical, not disability’, Cesar wasn’t allowed to have assistance from hospital staff to eat and shower.
‘So, he was left to his own devices and I had to go in and I had to care for him … So, if I didn’t feed my son and shower my son and care for my son while he was in there … it wouldn’t have happened.’
When Cesar turned 18, the doctors put him on an antipsychotic drug that caused lesions on his body.
‘He was having tachycardia. He … couldn’t concentrate. He had drowsiness. See, he had all the symptoms of rejection of the drug, basically.’
When Henrietta asked the doctors to take him off the drug, they told her that because he was over 18, ‘it was none of our business’.
Henrietta said Cesar had the ‘age capacity of a 10-year-old’.
‘So, my argument there is, would you tell a 10-year-old that doesn’t have any clear understanding of a drug, “Take this drug, it’s going to make you better”? And [Cesar] repeatedly asked them even to come off the drug and they threatened him with community treatment orders.’
Henrietta said she hadn’t applied to be Cesar’s legal guardian because she ‘wanted him to have that independence’.
‘Even though he was limited, he was still a man and he still had rights … They ignored him and they ignored us.’
Cesar received NDIS support and lived independently in his own house with the help of support workers. One day a couple of years ago, Cesar told Henrietta over the phone he wasn't feeling well.
‘I told both [Cesar] and the carer just to go to the local GP at that point and check what’s going on.’
At lunchtime, when she phoned to check, Cesar said he still hadn’t seen the doctor. Henrietta spoke to the carer and told him to take Cesar to the doctor. The third time she rang, Cesar said he felt worse.
‘I [told the carer], “If you don’t ring an ambulance, I will” … Eventually, they finally did ring the ambulance. By the time he got to the hospital, everything had shut down. So, his whole body had literally rejected the drug that he was on and he suffered a major heart attack.’
Cesar died in the ambulance.
‘So, he’s asking for help and [the service provider is] not giving it. I’m saying to get him help and they’re not doing it. So, it’s the story of his life basically, yeah.’
Henrietta said the coroner found that systemic inflammatory response syndrome caused Cesar’s death.
‘We still want answers. That’s the problem. We still want to know why and how come the system failed him. Why they didn’t listen to us? Why they didn’t listen to him?’
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.