Elizabeth and Gwen
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.
Since she was a small child, Elizabeth has lived in the same home, in a state-run disability centre. Now in her 70s, she is being forced to move into a group home.
Elizabeth has a rare genetic syndrome that ‘affects the nervous system and causes severe physical and intellectual disability’. Her sister-in-law, Gwen, believes she is ‘the oldest person in the world’ with this syndrome.
Gwen attributes Elizabeth’s longevity to the continuous high standard of care provided at her long-term accommodation, which is also a healthcare facility.
Gwen told the Royal Commission the Residential Unit Nurse Manager has been with Elizabeth for 25 years and all the staff love Elizabeth, understand the syndrome and her needs. She has ‘a high quality of life’ and is ‘healthy and happy’. Gwen says moving Elizabeth away from her home of nearly 70 years, to an unfamiliar place with unfamiliar people will be distressing for her.
In fact, Gwen fears the move could ‘either kill her or be a serious setback to her health’.
The group home planned for Elizabeth is ‘a house that is managed by an organisation that is not a health care facility’. Gwen and the nurses at the disability centre believe its residents need nursing care, ‘not just the “support” given in group homes’.
Some residents have already been moved. ‘Three have died in the past two months,’ Gwen told us.
Gwen would like the residents to be ‘offered the choice of staying in their home until the end of their lives’. If Elizabeth must move, Gwen would like to see ‘the process slowed’ and Elizabeth ‘moved in very small incremental steps over many months’. She believes there should be a ‘person-centred plan adopted’ and an option provided for ‘another solution if this one does not work out’.
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.