Anna and Penny

Anna was a proud mum, wife and First Nations woman. She was funny, cheeky, compassionate and intelligent. She loved to write.

Anna lived with psychosocial disabilities and became quadriplegic in middle age as a result of a brain disease, but she had dreams for the rest of her life. She dreamed of moving into an apartment with her husband, of having a little garden, and of getting a chocolate Labrador support dog. She dreamed of one day seeing her daughter give birth, of becoming a grandmother. Instead, Anna died in a hospital a few years ago in her early 50s.

Anna’s daughter, Penny, told the Royal Commission she believes her mother’s death was preventable. She says her life was cut short because of systematic ableism within the health care system, the group home environment and Australian society.

During her initial hospitalisation five years ago, Anna began the stressful and lengthy NDIS application process. Once she finally had a support package, she couldn’t use it. Public hospitals would not allow private NDIS providers such as physiotherapists or dieticians onto their premises, so Anna missed out on critical care that could have helped her regain mobility. Penny says this happened frequently in rural communities and was a common experience for First Nations people.

Eventually, as Anna’s condition stabilised, she no longer required acute hospital care. It was time to find somewhere to live. However the NDIS would not provide Anna with funding for specialist disability accommodation (SDA) until she could provide evidence she had been accepted into an SDA. But no SDA would secure Anna a place until she could prove she had funding. Anna was trapped in hospital for months feeling desperate and suicidal.

Anna was now only in a hospital because there was nowhere else for her to go. Penny said staff began to view her as a burden, and would leave her alone behind closed doors so they did not have to hear her cry. Often they left her sitting in an old wheelchair in extreme pain. She would cry out for hours, waiting to be lifted back into bed.

Staff sought to manage ‘problem behaviours’ – such as crying in pain – through behaviour management plans, prepared without consultation or consent. One of the strategies was to take away Anna’s phone – her only lifeline to the outside world.

It was hard for Penny to see the hospital environment as anything other than prison for her mum. ‘They were places where [she] was confined and deprived of dignity and her liberty. They were places where physical, sexual and emotional abuse occurred … They resembled asylums.’

Eventually Anna was able to leave the hospital and move to a group home. She didn’t want to live in a group home, but the alternatives were stark: hospital or homelessness.

The group home was understaffed and workers routinely neglected Anna. They often left her in bed until midday, with no breakfast. She had bruised and bloodied toes because busy support workers didn’t take enough care with her wheelchair and would push her into walls and doors, causing great pain. Ultimately, the group home was similar to hospital – it felt like a prison. ‘She did not have independence or freedom,’ Penny said. ‘She did not feel safe or dignified.’

Meanwhile, Anna was still having to deal with the NDIS. Penny described the interactions as ‘nothing short of hell’. Planning review meetings were highly invasive and distressing, with planners talking over and about Anna as though she wasn’t there.

‘She felt small and at the mercy of a bureaucracy that at its best did not care for her, and at its worse actively sought to make her life worse.’

Most areas of Anna’s NDIS plans were left severely underfunded. Lacking critical support, she developed conditions that ultimately contributed to her death. Penny believes that in the weeks leading to Anna’s death, hospital staff made judgements about her quality of life and gave her inadequate treatment because she was a woman with disability.

‘Through her interactions with systems and institutions as a disabled woman, [Anna] was left feeling as if she was not human, and not deserving of the love, safety, dignity, liberty and respect everybody has a right to. The people and systems around Anna robbed her of her agency and humanity. They tried to diminish Anna’s hopes and aspirations.’