Candice
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.
‘I was a person that loved life. And obviously, I’m quite far from the person I was.’
Candice is in her late 40s and lives with short-term memory loss and other cognitive problems as the result of an ice-skating accident.
‘I have, like, retrograde amnesia, so I don’t remember, um, like a lot of detail,’ Candice told the Royal Commission. ‘I’ve really needed … my family to help fill in the gaps.’
When she fell on her head, she ‘hit the ice and bounced a few times’.
‘I didn’t even know who I was or what day. I didn’t know my family … Um, there wasn’t a lot of thought processes.’
Doctors discharged her after a week in hospital with a diagnosis of concussion. An MRI showed ‘no structural changes’.
But back home, Candice ‘wasn’t functioning’.
‘I really couldn’t be left on my own. I wasn’t capable of making a cup of coffee or knowing what time it was cognitively … I was really just struggling to manoeuvre around the house.’
With the concussion diagnosis, Candice has ‘battled’ to get NDIS support for specialist rehabilitation therapies.
‘It’s really critical … in the first year or two to get these therapies. To help rehabilitate … while my – my brain’s still trying to repair … To help me build strategies to function … I need to learn the skills to know how to remember things.’
Candice has no private health cover. Once a week she sees an occupational therapist, a neuropsychologist and a social worker at the hospital ‘for five hours of back-to-back therapies’.
‘And I appreciate their support … But it’s been a bit futile, because cognitively … after an – even an hour, I can’t remember what just happened let alone going into another therapy … I’m jelly.’
The cost of trying to provide the ‘evidence’ to the NDIS has been prohibitive.
‘I had to spend thousands of dollars … They’re still requiring – um, more assessments.’
Candice feels the public health system should cover those costs for as long as she ‘falls through the gaps’ of funding eligibility.
‘The NDIS, its definitions are very black and white … Life’s not black and white.’
Candice paid for a neurological assessment to help with her application. She says it confirms that her symptoms correspond to ‘a traumatic brain injury, not a mild concussion’.
She says the ‘cognitive impairment’ hasn’t improved greatly over the past few months. Communication is challenging and this has led to ‘social isolation’.
‘It’s about the way our community views disability … it’s not an inclusive society … There’s lots and lots of settings where the barrier is an attitude towards disability. We’ve been totally excluded.’
Candice is not sure she’ll ever return to work.
‘I’m still not navigating the home adequately … I’m hopeful for the future … But I need these therapies. I need the resources that we can’t afford to, to have a, a meaningful life.’
She really wants ‘to learn how to be a mum and a wife again’.
‘I can’t figure this out myself. I need specialists to help me on that journey … But I’ll, I’ll never give up.’
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.