Mary-Rose and Lettie
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.
Mary-Rose, early 40s, has intellectual disability and is non-verbal. She has poor motor skills and needs help with meals and personal care, and lives in a group home with 24/7 support. Her mum and dad are aging.
About a year ago, Mary-Rose fell and broke her leg. Support staff called an ambulance and she was admitted to a regional hospital. Doctors operated, inserting pins and screws to stabilise the leg.
Her mum, Lettie, hoped one of Mary-Rose’s regular support workers would be able to support her while she was in hospital.
But the provider told her it wasn’t possible because the NDIS doesn’t fund support workers in a hospital setting. The NDIS expects hospital staff to provide this support.
Lettie told the Royal Commission that while individual staff did all they could, the hospital was severely understaffed. Mary-Rose was in hospital for more than a week ‘before any nursing staff thought to do a patient profile for her so that all staff would be aware that she was non-verbal, needed support with her meals and support with her personal care’.
Mary-Rose developed an infection and had to have further operations. The last operation went very badly because staff didn’t consider her disability prior to taking her to theatre.
‘It seems very evident to me,’ Lettie said, ‘that nursing staff, as well as the shortages that they face, are also not given the time or the training that is required to deal with people with disabilities.’
Mary-Rose ended up staying in hospital for almost a month.
‘This experience was extremely stressful for her and our family, and I am very concerned for her well-being if she should need medical care when I am no longer able to support her.’
Mary-Rose now has to have general anaesthetic administered at a major city hospital.
This means a long trip to the city for medical and dental procedures.
‘She would be on her own in a strange place with strangers who are unable to understand her and would be unable to communicate with her, unless I or her father were able to make that trip with her,’ Lettie said.
‘It does really scare me … that should I no longer be able to support [her] … what would happen to her?’
Lettie believes the NDIS should fund the person’s usual support workers to provide support in hospital.
Additionally, hospital staff need to learn how to care for people with disability.
‘In an ideal world, all hospitals would also have dedicated staff and supports that they can call on when a person with a disability is hospitalised because often the person does not understand what is happening, nor why it is happening.’
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.