Lillian, Maxwell and Myra

‘The issues … are systemic … It is not about individuals, it is about the system that gives rise to their actions.’

In the late 1980s, six-year-old Lillian accidently rode her bike into a cement wall. She sustained a brain injury affecting her development, speech and the way she expresses herself. Later, she was diagnosed with autism.

‘It created a level of difficulty for her which is almost unfathomable,’ her father Maxwell said. ‘The world is very hard for her to interpret.’

As a teenager, Lillian went through ‘an explosive period of violence’ and became very difficult to manage. She would go from ‘a state of tranquillity’ to rage in an instant. Lillian broke Maxwell’s nose a number of times.

Maxwell and Myra, Lillian’s mother, approached a number of state government agencies for help. The answer was always the same, Maxwell told the Royal Commission. They agreed the situation ‘was dire and terrible’ but ‘they could not help’.

Lillian’s behaviour affected the whole family. Vivian, her sister, overdosed on medication and was admitted to hospital. The hospital refused to discharge Vivian until Lillian was removed from the family home. ‘We had to choose between our daughters,’ Myra said.

Maxwell and Myra frantically searched for accommodation for Lillian, finding a place in a respite home. After a male resident exposed himself to her, her parents moved her to relatives and then a group home.

Lillian started taking antipsychotic medication and her outbursts reduced. However, after a violent episode the psychiatrist increased the dosage. A support worker, not familiar with the medication, increased the dosage further. Lillian collapsed on the school bus. She was humiliated and distressed and ‘from that day on’ refused to take any oral medication.

‘None. Not a Quick Eze, not an antidepressant, not an antipsychotic or a mood stabiliser. She would take nothing,’ Myra said.

This led to Lillian having increased outbursts and the home asking her to leave.

The only essential, non-oral medication she could take to help her mood, caused chronic constipation, and Lillian developed a large bowel hernia.

For the next few years Lillian moved between mental health facilities and group homes, at one stage living in an aged care home. Nothing worked.

Maxwell and Myra built a bungalow for Lillian in their backyard. The arrangement wasn’t ideal but it was manageable.

Then in the late 2000s Maxwell was diagnosed with a medical condition and could no longer support Lillian.

Maxwell and Myra decided to move states and found a disability service provider who ensured Lillian could transition into supported independent living three months after they moved.

Maxwell and Myra moved to set up their new home, but it took more than two years for the provider to find suitable accommodation for Lillian.

Lillian moved to a unit with 24/7 support. Initially she was only funded for a few hours of support each day. The accommodation provider and the disability support provider didn’t communicate with each other. When Lillian was distressed she wailed and smashed furniture, but the accommodation provider would ignore her. Their attitude was ‘she’s not our responsibility’. Maxwell considers this a ‘despicable form of neglect’.

At one point Lillian’s toilet overflowed with faeces. She began toileting in an ice-cream container until she became completely incontinent. The accommodation provider told Myra that Lillian didn’t want workers in her bathroom. Myra said some of the staff are ‘lovely people’ but they ‘didn’t know what to do’ because they ‘weren’t trained’.

‘Nothing was done to fix the problem. And when it happened again, they did say that they were afraid that [Lillian] would hit them if they went in there,’ Myra said.

Lillian now has NDIS support. ‘There are still problems, but it is a lot better,’ Maxwell said.