Jenni and Marcia
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.
Jenni, early 30s, has a genetic disorder.
She has progressively lost speech and motor skills since childhood, and needs help to move and eat.
Jenni moved into a group home about five years ago. The home was a two-hour drive from her sister Marcia, but the only option available.
Jenni settled in and appeared happy. Staff were experienced and qualified and provided excellent care and support.
The following year, around the time of the NDIS rollout, there were several staff changes.
Marcia told the Royal Commission the quality of Jenni’s care declined significantly.
Staff started to puree meals for all the residents.
‘One of [Jenni]’s pleasures is eating and that would have been a massive change for her,’ Marcia said.
‘They are cooking one meal for everyone and it doesn't matter whether you can eat it or not. A stir-fry for instance, they are pureeing that and then trying to give it as a meal.’
During COVID-19 things got worse. Jenni wasn’t able to go to her day program and staff rarely took her out of her room.
Jenni’s health deteriorated.
The house doctor doubled her epilepsy medication and increased other medication. She became drowsy and sleepy and couldn’t eat and her weight dropped below 30 kilograms.
Marcia complained Jenni was dangerously underweight and her medication levels were too high.
‘It was met with defence from the manager of the house … And then as we got further and further up the chain, it became more and more aggressive in how they behaved and how they spoke to us. Telling me that it was my perception that she was underweight, and it was to do with her condition.’
Jenni started to scream out in pain.
Marcia got her to hospital but doctors couldn’t find the source of her pain and sent her home.
This continued a number of times until Marcia insisted they admit her.
‘We were told that it was behavioural even though it wasn't. We were told … if we did run tests and we did find out there was cancer they wouldn't treat her because of her disability. It wouldn't be worth it.’
In hospital, staff refused to shower Jenni or feed her and they refused to give her any pain medication.
‘The way in which they treated us and her was probably the most horrific thing that I have ever been through in my life.’
Staff told Marcia to ‘face the fact’ Jenni was dying.
One day, Marcia was changing Jenni and noticed stones in her nappy. She picked them up and googled them and discovered they were kidney stones.
Doctors refused to believe her.
‘My age was brought into it, the fact that I was not a doctor, the fact that I was female. I was basically told over and over again that I didn't know what I was talking about.’
Instead, doctors decided to insert a feeding balloon into Jenni’s stomach.
Marcia did everything she could to stop the operation.
The hospital tried to have the family removed as guardians but were unsuccessful.
Ultimately, they ignored the family and operated on Jenni.
A day after the operation the balloon burst. Jenni had to wait days to go back to surgery to have it repaired.
Marcia contacted one of the world’s leading specialists in Jenni’s disorder. She discovered doctors should never have prescribed the epilepsy medication Jenni was taking because it is known to cause kidney stones.
The specialist spoke to Jenni’s doctors and they stopped the seizure medication and treated her kidney stones.
‘I even had one of the doctors say to me that the operation was probably unnecessary because the entire time it had been the kidney stones that had caused the pain.’
Marcia eventually got Jenni out of hospital and out of the group home.
She is living in a unit by herself with 24/7 support.
Jenni has gained weight and is slowly transitioning back to eating regular meals.
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.