Fiona and Rex
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.
‘I accept my husband, Rex, will die from complications of [his disease] and he has a Health Directive, but I will not accept him dying from neglect.’
Rex’s wife, Fiona, wrote to the Royal Commission about the neglect Rex has experienced at his supported independent living house.
Rex is an older man with an inherited degenerative disease. He needs assistance and supervision in his daily life. Rex moved into the house when he got his NDIS package.
‘I have had numerous issues with the house manager … and this company,’ Fiona said, ‘and I am puzzled as to how they can operate with no apparent regulatory party ensuring they [are] meeting the required qualifications and following what is expected.’
First, Fiona noticed there was no fire safety protocol in place at the house. She mentioned this to the manager but no action was taken. It took an intervention from a disability advocacy group for management to establish the protocol more than a year later.
Rex began having problems with his bowels and Fiona engaged a nursing service to help out. The visiting nurse asked the house manager to have staff complete some bowel and bladder charting for Rex. She emailed the charts to the manager. But when the nurse returned a week later the charts could not be found and she had to rely on the recollections of staff.
A few days later Rex had to be taken to hospital with a compacted bowel, pneumonia and sepsis. These were life-threatening conditions, but Rex pulled through.
‘At no stage whilst Rex was admitted to hospital did the manager contact the hospital,’ Fiona said.
The house manager was told that improved documentation needed to be in place before Rex could safely be discharged back to the residence. These included bowel, bladder, diet, fluid and sleep pattern charts for the staff to fill out as required. The manager passed on a bowel chart to the staff, but none of the others.
It took another intervention, this time from the NDIS Quality and Safeguards Commission, for all the charts to be put in place.
‘I have found it very frustrating and time consuming to find the right place to take my concerns. I know, when you have a loved one in care, even though you have help, it consumes your life … It has taken until last year to set up the NDIS Quality and Safeguards Commission … It seems wrong that service providers are profiting whilst they are learning to do what is required. Their clients’ lives are at risk.’
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.