Maggie and Kate
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.
Kate’s daughter Maggie has cerebral palsy and some other health conditions.
Kate told the Royal Commission she is disturbed that ‘service providers consider a dubious and inflexible interpretation of OH&S lifting guidelines (pulling forward vs lifting) to be more important than [her] daughter’s life’.
Kate explained that if Maggie chokes while eating ‘it is not easy to lean her forward and strike her on the back’. Instead Kate suggests carers need to strike her ‘on the back in a seated position’ or ‘pull her forward across their knees and strike her on the back in that position’.
The agency who supply Maggie’s support workers said Kate’s technique was ‘not standard’ for managing choking and ‘deemed that “pulling her forward” constituted “lifting”, and they would not do this, even in a life and death situation’.
‘Unless I could provide “standardised” guidelines for management of choking, they would cease service,’ Kate said.
After contacting several key resuscitation organisations looking for ‘standardised choking guidelines for a person with a severe physical disability’ she found they did not exist.
Eventually, she negotiated a compromise with the agency. Kate wrote the additional suggestion onto the end of a copy of the standard guidelines and had it signed by her GP.
Even though they reached a compromise Kate remains very concerned about this situation.
She believes guidelines should exist for people with disability and this is an example of ‘systemic neglect’ which could result in the death of another person in a similar situation as her daughter.
Kate hopes Maggie can move into supported accommodation in the future, but is ‘fearful that the problem may recur’ and the accommodation staff may not take action if choking occurs. Kate says Maggie’s life and others like her would be at risk.
Currently resuscitation organisations say they can only recommend the standardised guidelines. Kate believes this needs to be urgently addressed.
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.