Lacey and Hannah
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.
‘One hour of incompetency was a whole year of repair.’
Lacey is her 60s and has multiple sclerosis. Her sister, Hannah, has been her primary carer and ‘full-time advocate’ for more than two decades.
Hannah told the Royal Commission her biggest problem is getting qualified support workers for Lacey. She said disability service providers are careless about ‘who they employ and who they deploy’.
‘They rarely interview anymore. They definitely don't tick off whether they’re capable of doing the job that they’re supposed to do. So even with people with high needs like my sister who has bowel care, an SPC (suprapubic) catheter, you may get people that come on board that have never seen a catheter … They have no experience. In a home setting, for some reason, we find that allowable and it causes a lot of injuries and abuse.’
Hannah said that ‘mismanagement’ by support workers led to life-threatening injuries for Lacey.
‘She had numerous falls. She had a broken leg, she had choking that needed surgical removal of food. There were multiple hospitalisations and neglect from having untrained people come to our homes.’
On one occasion someone ‘walked in that’s supposed to have experience of bowel care’. Misuse of Lacey’s catheter caused chronic urinary tract infections and a perforated bowel. Lacey ‘nearly bled to death’. She will need to take antibiotics for the rest of her life.
When Hannah tries to hold providers to account they just say, ‘You prove that we did it.’
‘Even if they injure that person, they just walk away,’ Hannah said. ‘Then the person doing the rosters will have no idea. You definitely won’t get incident reports. So you often get the same person who dropped her, who perforated her bowel, who didn’t know what a night bag is arrive the next day, with no further training.’
Because of this, a lot of the training ‘is pushed back to the family or the carers’.
Even so, the neglect continues. Lacey is on a ‘big package’ and needs about 14 hours of in-home nursing care. She has two providers.
‘We could never get enough care from one agency so I use a lot of online people also. We just moved from a very small company to a bigger company to see whether we can get more staff and more qualified staff. We’ve already had maybe six or seven staff turn over … Half the time, they don't know much. She’s on a power wheelchair. I'd say 99% of the people that come to us do not know how to use it, so her independence is minimal. She goes from her bed to her chair unless I’m here.’
Sometimes staff simply don’t show up.
‘There's no responsibility of filling shifts anymore. So if a person doesn’t turn up, who knows?’
Hannah says people with disability have become ‘cash cows’ for the providers.
‘These agencies know – it doesn’t matter who we send out, as long as someone turns up we’re going to get paid. And that’s what NDIS has granted them, so you just get anybody thrown at you.’
The poor quality of care has taken its toll. Lacey is ‘on the decline down’.
‘The anxiety that it creates within the person with disability is just beyond what people understand. They don't want you to leave, they depend on you totally, they’re scared to have a new person walk in the door.’
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.