Ellouise and Christiane
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‘Her house became a total institution because this support worker team operated as their own little entity. And this is why they are resistant to anyone providing any sort of directional guidance to them.’
Christiane’s sister, Ellouise, had intellectual disability with ‘high complex needs’. She was in her mid-60s when she died a year ago.
‘Her communication was probably at the level of a five or six-year-old,’ Christiane told the Royal Commission. ‘But she was functioning.’
When she was in her 30s, disability services moved Ellouise ‘into a small two-bedroom townhouse in a public housing complex’, with ‘one-on-one 24/7 care by support workers’. Christiane became her legal guardian.
For many years following the switch to the NDIS, things went well.
‘She had a personal trainer and was attending a gym twice a week. She was swimming … They were taking her to the movies, taking her out for coffee, to lunch, so I guess she regained some aspects of life that we take for granted.’
Christiane had some concerns about the support workers. ‘Particularly around the finances … They used her card.’
When COVID arrived ‘the wheels really fell off’, and her concerns about support workers became ‘quite elevated’.
‘I needed to give consent, I needed to know about any medical procedures as her guardian, and that was problematic. They resisted that.’
Christiane also wanted her sister’s medications reviewed. One was ‘a very strong psychotropic medication’ – a possible side effect was ‘life-threatening constipation’.
‘I think there was negligence. There was complacency. They were resistant to advice, not just from me.’
Ellouise was a diabetic. A dietician gave support workers ‘express instructions on what to do around her constipation’, but nothing seemed to change.
Once, Ellouise was admitted to hospital ‘semi-comatose’. She was diagnosed with sepsis and required resuscitation, but the support worker didn’t inform Christiane for hours.
There were many ‘conflicting stories’ about what had happened.
‘The support worker who was with her at the time had been dismissed … and that was all the detail I got.’
In a later report, Ellouise’s physiotherapist ‘stated that her admission to hospital was due to a fall’.
Christiane told the provider she ‘did not have confidence in the support workers’ and ‘wanted a change of team’.
‘I asked if they were vaccinated and I was told it was not mandated.’
A few months later, one of her support workers got COVID and Ellouise had to isolate.
‘I was not advised about that until two days later,’ said Christiane. Senior management met with the NDIA about how to manage the situation, but Christiane was ‘not invited to the meeting and didn’t hear anything further’.
Christiane said the provider’s treatment of her sister was unacceptable. There was ‘no transparency, no accountability’.
‘People can be abused and there’s no sort of external intervention. These people are exceptionally vulnerable – their communication is an issue for them, isolation is an issue for them.’
When doctors put Ellouise on life support, she ‘was constipated, she had a blocked bowel’, Christiane said.
‘I was providing direction to them. I was saying to them these things needed to be addressed, but nothing happened. She died.’
Christiane is still waiting to hear from the NDIS Quality and Safeguards Commission.
‘The lack of response tells me it’s not working.’
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.