When Bruce and Tin Standen took their young daughter to a Sydney private hospital, they trusted she'd be safe while they took a much-needed break with their other children.
But Melissa "Maisy Mouse" Standen, whose severe disability left her completely reliant on others, died a horrific and preventable death at Allowah Presbyterian Children's Hospital in 2015.
The small 13-year-old, who couldn't co-ordinate her movements, stand upright, talk, eat or drink on her own, accidentally choked to death when she came out of her bed in the night.
Melissa was hung on her t-shirt, which caught around her throat when she fell from the bed on January 13, a Glebe Coroners Court inquest has heard.
State coroner Les Mabbutt on Tuesday found the hospital contributed to her death by failing to introduce proper risk assessments and admission procedures, using a bed unsuited to Melissa's needs, and inadequately training staff.
Melissa wriggled in bed and was small enough at 14.9-kilograms to fall through a gap at the head of the bed.
For the Standens, the distressing nature of the death - and the fact it happened in a professional care setting - has been impossible to comprehend.
A tearful Tin Standen said the death of her daughter, who communicated through facial expression, laughter and crying, had left a massive hole in her life.
"How could she just fall out of bed and then she got hung?" she told AAP last week before the findings were released.
"You never think that something - if you fall off the bed, you fall straight out of bed onto the floor, you know?"
Mrs Standen said they resisted putting Melissa in respite care for many years.
But by 2009 they desperately needed a break and time with their other children, so started taking Melissa to Allowah during holidays following a nurse's recommendation.
The Standens have spent more than three years searching for answers about Melissa's death.
They've appealed to police for documents, gone to the Health Care Complaints Commission and the Therapeutic Goods Administration for information on Melissa's bed model and possible recalls, spoken to staff at another hospital about staffing ratios and procedures, and consulted a biomedical engineer about bed railings.
The coroner said Allowah had made real efforts to identify and introduce procedures to address system failures, lack of staff training and culture since Melissa's death.
He said no recommendations against the hospital were necessary.
But Mr Mabbutt did recommend to the health minister that experts consider a standard, guideline or other publication around improving the safety of beds used by children with disabilities.
The Standens hope the inquest will prompt meaningful changes "because kids with disabilities basically have no voice".
"I think, just because she's disabled, people just wipe her out," Mrs Standen said, her voice shaking though tears.
"If nobody fights for them they just get swept under the carpet, but it's not right."
Australian Associated Press
