Lucine and Lessie
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.
Lucine, mid-60s, is Deaf and has an intellectual disability. She was married for many years to Keith, who was also Deaf.
‘They had a happy life,’ Lucine’s sister Lessie told the Royal Commission. ‘They had their own home. They didn't need anybody just to support them, apart from, you know, family from time to time.’
About 20 years ago, Lucine became almost blind, when her eyes were very suddenly affected by an incurable condition. ‘After the initial shock of all that, she still managed to be very independent,’ Lessie said.
Keith died several years ago and soon after it became clear that Lucine would need additional support to manage in her own home. ‘There was a lot of things that Keith did for her that … I guess that we all took for granted,’ said Lessie. Lucine started receiving NDIS funding.
A few years ago Lucine had surgery on her eyes. When she came home from hospital, her service provider said staff were not permitted to administer the eye drops. Lessie had to help Lucine herself, or ask a neighbour to give Lucine the eye drops four times a day.
‘So I made a complaint to [the service provider] and said, “I'm not happy” – you know, “You have a duty of care. You're being paid to do a service, and you're not delivering it.” So about a week or so later I got an email from the managing director saying that they were ceasing services.’
Lucine had to move out of her home while Lessie organised new services.
‘She went downhill. She – her anxiety went through the roof. I had to take her back to her doctor. She's now on antidepressants.’
Lessie said her sister desperately wanted to go back to her own place.
‘[Where] she was familiar, where every single bit of furniture was, where her milk was in the fridge, where her towels were, where the tea and the coffee and the Weet-Bix and all that was. And because she's always been independent and lived independently on her own.’
Eventually Lessie was able to organise a new service provider, and Lucine has returned home. But her NDIS package doesn’t cover overnight assistance, which she needs.
When Lessie asked the NDIS for additional support, staff told her Lucine needs to move to a group home, which would be cheaper. Lessie pointed out that would mean losing access to the Deaf support workers Lucine has at the moment, and she would not be able to communicate.
‘And this is my argument with NDIS – there's no choice and control. They haven't met her. They don't know her. They've never seen her.’ Yet they have decided Lucine’s supports are sufficient – ‘I just am flabbergasted about that,’ Lessie said.
Lessie has numerous concerns about the way Lucine’s NDIS funding is managed. She has refused to sign off on some invoices because of the lack of detail.
‘I said, “Can you please give me some dates that these things occurred, just a breakdown so that I can sign off on your $45,000 for the month that you're asking for, or whatever it was.” And they said, “Well, this is what she did.” And I said, “Yeah, who with, what date?”
Lessie fears that asking such questions makes trouble for Lucine.
‘It's just quite frustrating and upsetting to see someone that wants to stay and be – have the little bit of independence that she's got taken away from her. And I believe that it's against her human rights as a person. They haven't asked what it is that she wants to do … You can't just take her out of an environment that she knows and wants.’
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.