Stefanie and Viktoria

‘My vision of what life for those with disabilities, living in group homes, could be, is so different from that being provided … It is [Stefanie’s] personality, interests, sense of fun and achievement that drives me to seek a more interesting and satisfying life for her.’

Viktoria’s sister, Stefanie, has an intellectual and physical disability. She lives in a group home with six other people. Viktoria visits regularly.

When Viktoria arrives, Stefanie is often in front of the television. The television is usually blaring. With seven residents, staff and visitors there is so much noise, Viktoria told the Royal Commission, it can be distressing. ‘Nobody questions a room full of potentially active and interested participants being plonked in front of a television for hours on end,’ she said.

‘I have visited late on a weekend afternoon and noticed food left on faces and dripping down people’s clothing which makes me think nobody can have looked at them since lunchtime.’

One time Viktoria arrived and Stefanie was dozing in a chair with tomato sauce on her face and clothes. ‘I’d love to take my sister outside and sit with her in the garden or let her show me how she waters the plants. But … there is no garden. There are no garden seats or smooth wide paths to facilitate moving about with a walker.’

Stefanie has gained a lot of weight and is less mobile than she used to be. ‘The paying participants in this organisation have in the last 18 months put on hundreds of kilos between them,’ she told us. A staff member suggested Viktoria take most of Stephanie’s clothes away because they no longer fit.

Viktoria and another resident’s sister complained about the food the group home serve – often party pies, sausage rolls and donuts. The house manager told them it was the residents’ right to choose what they want to eat.

‘In the simplistic adoption of choice and control my sister is not protected in the way a … person of equivalent intellectual age would be. She is given free choice with food rather than guided to choices that will allow her to have a more agile and involved life.’

Viktoria also told the Royal Commission about a number of life-threatening incidents.

One time Stefanie was given another resident’s medication and had to be resuscitated twice in 24 hours.

Viktoria raised multiple concerns about the home’s drug-handling processes and when she didn’t get a satisfactory response escalated her complaint. Eventually she received an apology and an assurance two staff members would be present to administer medication.

Viktoria arrived at 7.30 am one morning and discovered Stefanie hadn’t been given her medication. There was only one staff member working. ‘The initial reaction of the team leader was to blame me for dropping in and upsetting a new staff member.’ Eventually, the morning roster was changed. ‘Will improvements only be initiated if an organisation is caught out?’ Viktoria asks.

For a period of time a new resident dominated the home physically and emotionally. Fearing for Stefanie’s safety, staff told her to stay in her chair and not move. Bruised, scratched and in tears, staff told Viktoria they felt helpless because there was no support to manage the new resident.

Viktoria believes the NDIS can make a difference. Stefanie’s NDIS funding allows her to attend the gym, go swimming and enjoy social and creative activities.

However Viktoria is concerned ‘the overall effectiveness of NDIS implementation is currently only as good as providers supply and users accept. To achieve its goals on a national level, requires a massive change of attitude and ethics.’

Viktoria would like group homes to be more accountable.

‘I despair for the lack of truth and the lack of transparency. I despair for the lack of regard for family carers, the lack of respect for family knowledge and the lack of effective communication processes.’