Oksana
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Oksana, in her early 20s, is autistic and experiences anxiety and depression. She receives a Disability Support Pension and NDIS funding. She also has mild cerebral palsy and uses a wheelchair she bought herself, second-hand. She gets no support from the NDIS for this disability, as she doesn’t yet have the necessary official diagnosis from a neurologist.
‘They're like, “Well, it's all just caused by your anxiety.” I'm like, “I see why you think that, but I've had these same symptoms my whole life, since birth.”’
Oksana was diagnosed with autism when she was about 10. Since then, doctors have attributed her physical issues to that.
‘Like “Why does she walk really weirdly?” Oh, autism. Um, “Why can't she eat properly?” Autism. “Why are her limbs really floppy?” Autism. “Why does she have such bad fatigue?” Autism. Even though those are not signs or symptoms of autism. So NDIS, despite having many reports stating the functional need for a wheelchair, they will not fund one.’
Her current GP, occupational therapist and physiotherapist agree she has cerebral palsy, but the neurologists she’s seen do not.
‘I'm just like sick and tired of, like, paying so much money to go to these expensive neurologists and then just have them ignore me. They're not listening.’
At the moment Oksana uses her wheelchair ‘most of the time’. It reduces the back, knee and lower leg pain she experiences. She would like a lightweight prescription model so it fits her properly and she can get it in and out of the car and push herself in it even when she’s tired.
‘It’s just frustrating because I know NDIS is all about building independence. And I'm kind of like, well, if I have a wheelchair I don't need as many supports because I can actually go and do things on my own.’
Oksana told the Royal Commission she has a five-year goal.
‘[To] be able to do pretty much everything by myself because I'll have the right tools and then, you know, I might only need someone to come over once a week to help me clean or something.’
At the moment Oksana’s support workers drive her places, get the wheelchair in and out of the car and help her to ‘navigate everyday life’.
‘I really want … to be able to do what everyone else can do. I don't want to have constant supports. I don't want to have – like, I don't want all of that. I really do want to be able to live independently and, you know, having a wheelchair and having the right tools in place I think would greatly benefit me in that sense.’
Oksana has recently started playing wheelchair sport and finds it very beneficial.
‘I got to a point where I felt like I was going to hospital every month because I really wanted to kill myself. I was having a horrible time. I'd failed uni … couldn't find a career, I couldn't do anything – I felt like I couldn't do anything right.’
People urged her to exercise. She didn’t think it would help, but gave wheelchair sport a go. She now loves it.
‘But I think what for me personally makes the biggest difference is the community. Having people that check in on you if you don't show up to training and be like hey, are you all good? But also just, yeah, feeling accepted and not being self-conscious of my body when I'm playing coz I'm like, you know what? Everyone's body here is weird. None of our bodies are the same. And just seeing everyone else use a wheelchair, and it's so normal.’
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.