Clara

‘There was some pretty horrific stuff happening in there. It was very much a culture of nobody speaks up.’

Clara is a support worker for people who are deafblind. About three years ago, she was regularly visiting an institution for people with intellectual disability.

‘I was going in with a young deafblind man as the peer to meet deafblind people in there and get to know them,’ she told the Royal Commission. ‘What we saw in there was horrendous. We witnessed what was a preventable death of a deafblind man … He was very unwell. He was displaying quite distressing behaviours that day. Staff were incredibly rough with him when we took him back to his unit.’

Clara alerted management. So did a community access worker who visited in the afternoon but found him too unwell to take out.

‘He died that night. There was no medical intervention. Nobody called anyone … There was never an answer to any of the emails or any of the concerns that we raised.’

Staff had always neglected the man, Clara said, leaving him in his unit ‘for hours and hours on his own’. They showed the same ‘lack of dignity, lack of respect’ to all other deafblind residents.

‘Nobody touched them. Nobody came near them. They didn't have access to anything to drink. It was common to see them make their way to a bathroom and drink out of the tap. No toilet paper was provided. The dehumanisation of that place was incredible.’

Clara said staff ‘straightjacketed’ another deafblind woman and put her arms in restraints, ‘so that she couldn't bend her arms and poke herself in the eye’.

‘It was considered a behaviour that she had … Those behaviours are communication.’

When the institution closed, the government promised jobs to its staff.

‘And so those practices and those attitudes and that culture has just moved with them into group homes … with the same things happening, and we're still witnessing that.’

Clara said deafblind people were moved into ‘multiple homes’ all over the place. That made it ‘really difficult resource-wise to support them in any appropriate way’. They needed to be housed together ‘where there is at least an opportunity to have a communication-rich environment, and to have staff that know how to work with deafblind people’.

Clara is involved in training support staff for a peer-led disability organisation.

‘We talk about people being engaged in meaningful activities in their home life. You know, like, unpacking the dishwasher and putting their own clothes away. And we get responses like, 'No, they have unhygienic toilet practices and they can't be touching dishes of other people. And you know, it's bullshit.’

One woman has been in a home for 18 months.

‘Every area of her life has declined. Her mobility has declined. She's mostly in a wheelchair now. They stopped organising community access for her to engage with the community.’

Some deaf support workers refused to work there, Clara said, ‘because of the way they were treated and discriminated against.’ She complained to the NDIS Quality and Safeguards Commission.

‘It’s a toothless tiger that holds no power to do anything.’

One of the problems, Clara says, is that ‘deafblind is not a disability in the system’.

‘When you have to choose whether your vision or your hearing is the worst disability, it's stupid.’

Clara has been an NDIS local area co-ordinator and finds ‘there’s a lack of understanding among planners and LACs around deafblindness’.

Deafblind people face huge discrimination when it comes to access, she said.

‘There needs to be a service for deafblind people … If you can make it accessible for deafblind people, you've pretty well covered every disability, because that's probably one of the most marginalised groups.’