Janis
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.
Janis has physical disability. A few years ago, she started relying on her wheelchair more frequently. She applied to the NDIA for funding to modify her home.
After almost three years, the modifications are still not complete.
Initially the NDIA refused to fund Janis’s application because they felt the occupational therapist’s plan wasn’t ‘value for money’.
‘All they’ve seen is I’m in a wheelchair. They got no idea why I’m in a wheelchair. They’ve read nothing.’
Janis contacted them and ended up having to describe her ‘physical makeup’.
‘I’m so sick of describing me … She was already advising me on the way to fix my kitchen and she didn’t even know I had no arms. How is it possible these are the people that are making the decisions about my needs?’
After more haggling about ramps and automatic doors, the NDIA eventually approved funding.
Janis then had to find NDIS approved contractors, which has been almost impossible because of where she lives.
It has become increasingly difficult to live in her home.
Janis has to go to the toilet in a bucket and is unable to use the shower. She can’t access the running water in her kitchen.
Recently, the NDIA moved her to an accessible motel room until the modifications are complete.
She is able to use the shower and toilet but it continues to be extremely difficult to find regular support workers, living where she does.
‘There’s at least a dozen girls in this town who have seen my body. And I’ve had enough. I’m over it. I want some personal time. I’m having so many people in the shower with me I had to cut down my showers.’
Janis has managed to find one support worker who can come once a week, every week. So now she only showers once a week.
‘I’m looking pretty shitty, and I’m feeling pretty shitty and emotional.’
Janis said her service provider has started cancelling services with almost no notice.
‘They rang me up and just said, “We can’t service you tonight.” I’ve literally gone, “So, I’m not eating?”’
Another time a support worker brought her grandchildren to Janis’s house during her shift. The children stood watching Janis, amazed at the way she eats because of her disability.
‘Do you think I needed that in my lounge room at the end of the day?’
Janis made a complaint to the provider to no avail.
‘I am probably one of their most pedantic people with my pride and my dignity and my wanting to be private. I don’t know why they don’t treat it seriously.’
Janis’s provider has asked her to train support workers in exchange for food vouchers.
She would like them to employ her, pay her a wage and train the support workers properly.
‘It’s just an ongoing battle. And I just don’t think it will change.’
Janis hopes the modifications will be finished soon and she can move back home.
‘I’m tough. I’ve been handling it. But it’s getting a bit much. I'm a lot weaker. I’m a lot more impatient. I certainly swear more than I ever swore.’
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.