Dayna and Jeri
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.
‘We have a group of people, unique people in the community, that get up every day and they want to live their life, but because of the lack of services and awareness they can't.’
Dayna is in her 70s and deafblind. She spoke to the Royal Commission with the help of her daughter, Jeri.
‘She uses tactile deafblind sign and she communicates face to face and she has no other mode of communication,’ Jeri told the Royal Commission. ‘Mum enjoys living by herself and being an independent woman, but there are some barriers that mum experiences to being a fully independent woman.’
When she goes out, Dayna relies on interpreters who have to be booked in advance.
‘I've got a few,’ said Dayna. ‘Off and on … sometimes I've got an interpreter for like half an hour or so.’
Jeri said it means her mother usually has interpreters for regular hospital appointments, but not for sudden visits to the doctor.
‘If mum needs to see the GP I can't recall one time that an interpreter has been available when she's needed it.’
Jeri said Dayna’s service provider recently gave her a computer tablet to book support services, but Dayna also needs someone to read it for her.
‘So when supports are cancelled for my mum, mum is left at home alone with no way to communicate … so mum will pace the house, check the front door several times, and then hours later she will come to the realisation that she's not receiving supports that day.’
Jeri said her mother struggles to find support coordinators, service providers and workers who understand the deafblind community.
For example, Dayna keeps running into doorways, even though she’s lived in her home for two decades.
‘The idea that has been recommended is a rope from her chair to the doorway … I was so angry I could not respond and I know it would not have been discussed with mum.’
When Dayna developed diabetes, a dietitian’s assessment stated that she ‘doesn’t have the capacity’ to cook meals, which Jeri said is untrue.
‘If you go to mum's house for dinner you will get meat and veg and dessert.’
Jeri said Dayna has little choice but to employ people who don’t know how to adequately support her. Many of Dayna’s friends in the deafblind community also struggle to get appropriate help.
‘A lot of them were diagnosed, which we're not sure how, with mental health conditions and were under medication because their behaviour [is misunderstood],’ said Jeri. ‘If we can see more awareness and training for deafblindness it would be a really positive thing for this community.’
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.