Elaina and Dakota

‘[Elaina]’s care was chaotic, traumatic and a catastrophic let down … Almost none of the policy that is in place to protect people with intellectual disabilities in hospital settings … was implemented during [her] stay.

Dakota, her sister, told the Royal Commission Elaina was ‘a determined, witty and resilient young woman who never allowed her disability to stop her from achieving her goals’. Elaina was proud of working in supported employment which Dakota said ‘she loved immensely’. She was in her mid-20s when she died.

A couple of years ago, Elaina experienced severe abdominal pain and was admitted to hospital. Tests revealed she had acute pancreatitis. She remained in hospital for many weeks.

Elaina had cerebral palsy, an intellectual disability and used a wheelchair. Her family expected her to receive the reasonable adjustments she needed.

However this didn’t happen.

Elaina’s mother, her primary carer, was not made aware of her rights as a carer and was told to leave the hospital when visiting hours ended. ‘This caused significant amount of undue stress to both [Elaina] and my mother,’ Dakota said.

Elaina was often in pain and alone. She didn’t know how to advocate for herself and didn’t want to ask the nurses for pain medication.

‘The doctors would often speak about [Elaina], including her condition and treatments, in front of her as though she could not hear them. My mother was not present during the majority of these incidents. This would often put [Elaina] in a state of anxiety and panic.’

Dakota said medical staff made no effort to communicate with Elaina at an appropriate level. They neglected to provide her mother with updates except once during an emergency procedure.

‘Many nurses appeared to not be adequately trained around intellectual disability and communication.’ Dakota gave an example of nurses always asking Elaina to stand. Elaina has never been able to stand but wasn’t able to communicate this effectively. Nurses kept intimating she was able to stand but was lazy.

When Elaina was discharged she still had fluid on her lungs. A nurse handed her mother the discharge papers to give to Elaina’s GP. They told her Elaina was booked for a follow-up lung scan.

Elaina needed a patient transport vehicle to take her home because she had lost her ability to mobilise.

At home Elaina continued to vomit. Her mother asked the doctors about this when Elaina went for her lung scan.

‘The doctors assured my mother that this was a part of the normal recovery process for acute pancreatitis. She was further informed the fluid on her lungs had disappeared.’

Two weeks later Elaina’s mother found her in bed. She was unresponsive.

Elaina died in hospital two days later.

At the time medical staff told the family Elaina’s death was unrelated to the pancreatitis. However Dakota said the death certificate lists ‘necrotising pancreatitis as a contributing factor to her death’.

‘We feel as though we are hitting our heads against a brick wall with trying to get answers as to how and why [Elaina] suddenly died from septic shock caused by the very thing she was supposedly “recovering” from.’

They want to know if Elaina was treated differently because of her disability.

‘We hope for and deserve such answers.’

Dakota said intellectual disability should not be a barrier to equal health care in Australia.