Ewan and Briony
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.
‘My stress level at the moment … Until we can stop fighting with [the NDIS] and try to get what [Ewan] needs, my health is just going down … I'm his carer, I'm not his wife. I haven’t been his wife for over 20 years.’
Briony’s husband, Ewan, is in his 50s. He is a double amputee and has destructive arthritis.
‘It’s in such a progressive stage that he’s basically got no function,’ Briony told the Royal Commission. ‘[Ewan] can't get a drink. He can't use a kitchen, can't cook. He can't do anything that you and I do. He’s reliant on someone the whole time. So for me to go out, I can't do that.’
Briony’s been caring for Ewan for two decades. A few years ago he joined the NDIS.
‘We haven’t been able to resolve anything. We've put in to get our bathroom modified … Our [bedroom] isn’t big enough. Every time we go and we ask for something we get turned down. They say it’s not enough information.’
Briony said the NDIS’s demand for reports drains Ewan’s budget.
‘We got told that the funds were really low, so we cut all of [Ewan’s] services off. We cut off all his therapy, all his care, just to get us over to review date. Which then they couldn’t give us the review date when we wanted it because they were too backlogged.’
Briony said no-one from the NDIA visits Ewan to see why he needs the support he’s asking for, and she suspects no-one at the NDIA actually reads the reports from his specialists.
‘I had one of the NDIA tell me … “With a bit of therapy,” she said, “your husband will be able to roll over and get himself dressed.” And I said, “Are you reading the same report that I'm reading? … He’s a double amputee.” I said, “He can't use his hands.”’
Ewan needs a new wheelchair that fits through the bedroom door and a new ramp to escape the house if there’s a fire. Briony said the NDIA rejected these requests for not being ‘reasonable and necessary’.
‘At least if they came to the house they can see what they're talking about … Then this “reasonable and necessary” might not come into it as much because then they can actually see that with these sorts of things it would give him more of a functioning life.’
Briony worries the lack of adequate support for Ewan is damaging her health, too.
‘They say they need to support the carers, but they're not supporting the carers at all … I don’t know how much more I can keep fighting. Every time he gets rejected I feel like I'm losing a bit of myself.’
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.