Iris, Malia, Sylvie and Deanna

Iris told the Royal Commission she is concerned about how some people with disability are being cared for by their immediate families and how they ‘are being abused, neglected and exploited in their homes’.

‘Who is monitoring what goes on behind closed doors,’ Iris asks, ‘especially when these children live in an environment where there is little or no accountability?’

To illustrate her concerns, she told us about Malia, Sylvie and Deanna, three people with disability in her community who are living in the care of family members.

Malia is in her 40s and has a cognitive disability. Malia lives with her mother, just down the road from Iris’ house.

One day Iris found Malia in her front yard, clearly distressed. Malia’s mum had been gone for hours and Malia didn’t know where she was. Iris took Malia back inside the house and discovered there was no electricity – only a candle for light. And there was nothing except bread for Malia to have for dinner. Iris phoned the local hospitals and the police to try to find Malia’s mum. Eventually she learnt that she regularly gambled at the local club and would often leave Malia on her own like this.

Iris notified the Department of Community Services about her concerns for Malia, who was subsequently moved into ‘cottage care’. Iris says, ‘on visiting her, I found that she was so happy to be living there in her own independent room and sharing life with others alike’.

Sylvie is in her late teens and has cerebral palsy. She, too, lives with her mother.

Iris tells us that Sylvie’s mother often becomes ‘very frustrated and impatient’ with Sylvie, and ‘reacts to her in an abusive and angry way which renders the girl in tears and very upset’.

Sylvie’s mobility and independence is compromised because her mother will not let her use her motorised chair. Instead, Sylvie ‘drags herself around the floor at home or is made to use a walker she struggles with’.

Iris tells us that things paid for with Sylvie’s money are often kept and used by the family. An example of this was Sylvie’s new iPad, which was particularly distressing for her because she uses it to communicate with her friends.

Deanna is in her 30s, has an intellectual disability and lives with her mother. ‘Deanna lives a rather lonely life waiting around for her mother to take her places,’ Iris says.

‘She knows what she wants and knows how to express herself and her desires … [but] her mother has taught her nothing in regards to daily activities around the house and has made her totally dependent on her – yet Deanna is very capable …

‘Now with NDIS support, she can go out, but her mother won’t let her spend any of her own money. Her mother doesn’t work and relies on the housing affordability and bonuses she gets from having a disabled daughter …

‘Deanna needs to be able to learn to cook, clean and use public transport so she can gain the independence she is capable of and learn to live a life outside the clutches of her dominant mother. Instead, Deanna is dependent and bored out of her brain.’

Iris would like to see the government implement a collaborative monitoring system with social housing providers, child safety agencies and police to ensure that people with disability are not abused, neglected or exploited by their families.