Lillia and Raina

Lillia has catatonic schizophrenia and a cognitive disability. In the early 2010s, when she was in her 40s, she became partially paralysed as a result of a fall.

At the time, she was living in supported accommodation. Lillia’s sister-in-law, Raina, told the Royal Commission that Lillia’s care had been ‘second to none’ and staff ‘kept her happy, safe’ and connected to the community. However, after the fall Raina had to move as the provider wasn’t able to support her physical disability. Raina became Lillia’s guardian and began looking for alternative accommodation for her.

The only place that would take Lillia was an aged care home.

Initially things were fine. But when Lillia’s father died the home refused to allow her to attend the funeral. This was ‘the first sign’ something was wrong, Raina said. The home argued she would have ‘no understanding of the event’. Lillia is non-verbal but can communicate and ‘understands everything that is going on around her’.

The home began restricting Lillia’s movements. Support workers could only take her on approved outings for limited time. Planned family outings were cancelled with no notice for no reason.

Staff neglected Lillia’s personal hygiene and health. They only showered or bathed her once or twice a week and never cleaned her teeth. ‘She now has 15 broken and jagged teeth … five abscesses, gingivitis and eroding gums.’ Lillia had recurrent foot fungal infections but the home refused to let a podiatrist treat her. They argued they had a podiatrist on staff, but Raina said this person was a beauty therapist, not a trained podiatrist.

The home only ordered Lillia’s essential schizophrenia medication when she ran out. Sometimes she would be without medication for four days.

Kitchen staff brought Lillia her meals. She would scream to let staff know she needed help. After 40 minutes the kitchen staff would take the meal away. Lillia continued to scream because she was hungry. Raina and Lillia’s disability support workers had to be there at meal times to ensure she was fed.

Through intensive physiotherapy following her fall, Lillia had been able to sit and ‘weight bear with assistance’. But after five years of staff not taking her out of bed and putting her in the purpose-built wheelchair, Raina said, she ‘is a twisted mess’ and in a great deal of pain.

Staff moved Lillia’s buzzer out of reach and she would call out and scream ‘to be acknowledged’. After a few years, because of her behaviour, the home moved her to the dementia ward.

In the dementia ward Lillia was ‘beaten by other residents, urinated on, relieved on and had lots of her personal items stolen’. Raina complained, but nothing was done.

After she complained to the Aged Care Quality and Safety Commission, the home ‘installed a barn door for her protection’. It was useless, Raina said, because staff left it open and the residents would wander through.

Over the years Rania reached out to a number of people and organisations to help Lillia. These included doctors, physiotherapists, the NDIS, government departments, housing providers and local and federal ministers. All of them ‘failed [Lillia] miserably,’ she said.

‘The services that were meant to support us and assist us with finding better alternatives … have let us down. Nothing prepared us for what the nine years would do to [Lillia].’

Eventually Raina found a new two-bedroom home for Lillia with 24/7 support.

‘The once funny, fun loving, happy person has returned. [Lillia] is now showing signs of feeling extremely safe and enjoying life … My reward is seeing my cheeky [Lillia] return, opening up and speaking up for the first time in years and feeling she has the power to do so.’