Ruby and Sue
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.
‘Being involved with this sector has left me feeling overwhelmed, powerless and despairing much of the time. I strongly suggest that this story is representative of other hidden Australian citizens who do not have a spare relative to tell it for them.’
Sue is a retired health professional who supports her niece, Ruby.
Ruby loves art and played in a rock band in high school. After graduating, she had surgery for Crohn’s disease. Now in her late 40s, she lives with a number of neurological and physical disabilities. Ruby is unable to eat solid food, stand, or sit upright, and is confined to bed in a group home.
‘She literally never sees the sun or clouds overhead, nor feels a breeze on her skin,’ Sue told the Royal Commission.
‘In [Ruby’s] words, “Am I expected to spend the rest of my life hidden behind these walls?” … She never sees beyond her door, which doesn’t face her. Her only view of the outside world is a window, but she is unable to open the curtains.’
Sue said that initially Ruby’s care was ‘adequate and kind’.
Then about 15 years ago, after spending a year in rehabilitation for assessment and treatment, the state government transferred Ruby to independent units in a regional town. The government also handed her support funding to the care provider who ran the units.
‘Within a very short period of time carer hours reduced and quality of care reduced with it … For almost a decade, [Ruby’s] care consisted of staff constantly running in, rushing out, being called away, leaving half a leg washed, missing out on many basic tasks.’
The care provider removed Ruby’s princess chair, bought by her parents to help her move, for safety reasons, and stopped transporting her by van to a local doctor.
When Ruby and her family asked about the apparent cuts to her funding, the care provider told them they couldn’t reveal the amount for ‘privacy’ reasons.
‘A few years ago the family discovered that [Ruby’s] funding had not been reduced; only the services the [care provider] provided to her,’ said Sue. ‘What was this funded amount used for if not for [Ruby’s] care requirements?’
She said the poor care had profound effects on the health of Ruby and her parents.
‘I am at a loss to describe the sense of frustration, helplessness, and feeling completely overwhelmed which existed without abatement during these years.’
Ruby also spent that decade on a state government waiting list for allied health support.
‘She never rose to the top of that list for occupational therapy or psychological support,’ said Sue, ‘and when, finally, physiotherapy support arrived, it was unprofessional and damaged [Ruby’s] health.’
A few years ago, after receiving an NDIS plan, Ruby gained access to better physiotherapy. An occupational therapist is assessing her for a wheelchair and an ambulance now takes her to see her doctor once or twice a year.
But Sue said many issues still haven’t been fixed.
‘[Ruby’s] isolation is absolute. She is completely isolated from community and any semblance of a normal life.’
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.