Jennie and Deb

Jennie was a ‘floppy baby’, her mother Deb told the Royal Commission. She didn’t do ‘normal baby things’ or walk until she was two and a half. Doctors said she was ‘severely retarded’. Just over 10 years ago a specialist provided a new diagnosis. Jennie is autistic.

Now in her early 60s, Jennie shares a housing department home with another woman, with support from a service provider. This has been the arrangement for close to 30 years and it works well. Before that, Jennie’s housing and care were very problematic.

As a young child, Jennie went for respite care to a facility for people with disability or mental health illnesses. ‘As time went on we asked if we could board her during the week and bring her home at the weekends. That was refused,’ Deb said. Instead, Jennie became a full-time resident at the facility.

Deb was caring for her other children, her husband and her ageing mother.

‘I just had to deal with things. I felt I couldn’t cope so it was suggested that we place her in there which we did. But we were there, always there for her. We would go up all the time. We missed her and the children came with us when they were young.’

Jennie lived at the facility for the following nine years. Staff didn’t allow the family to enter the building and they never saw inside it. But they trusted that Jennie was being well cared for.

‘We never really suspected anything at all,’ Deb said.

One day, a nurse advised Deb to access Jennie’s records.

These revealed a horror story of abuse and neglect, including punishment such as leaving Jennie outside in freezing weather and refusing her entry to the building.

‘Some of it’s just such disgusting behaviour for people that are meant to be caring for another human being who can’t care for themselves.’

The family brought Jennie home and explored other options.

Deb and her husband established a group home where Jennie could live, but when the government withdrew funding for services, it became unsustainable. Jennie returned to her family.

‘I came out one day … and [Jennie] was at the door here, naked, and she was using her bowels. It was everywhere. So I couldn’t – that was it, I just … I couldn’t take her anymore. So I got her showered and everything, I rang my husband and told him I was taking her back,’ Deb said.

Jennie went back to the facility, but Deb became a fierce advocate on her behalf, calling politicians every day and standing outside parliament to press her cause.

Finally she secured new accommodation for Jennie, the place she still lives in now. Through the service provider, Jennie has a care coordinator who has a good understanding of her needs and encourages her to learn new skills.

The health facility where Jennie first lived has closed down now. Deb described it as ‘hell’.

Staff there tried to make Jennie ‘normal’, she said.

‘She wasn’t ever going to be normal … but there was just never any training, there was nothing there. Even all the things that were suggested … Things that they should have been doing and they didn’t do it, they just didn’t. They couldn’t be bothered, it was the too-hard basket. They just wanted to go to work and have a slack shift because there was just not enough people there to support the behaviours and the people and their needs.’