POWERFUL stories of disempowerment; that's what the head of the Disability Royal Commission wants you to hear.
As the commission prepares for its 25th hearing starting July 11, Commission Chair Robert Sackville AO says that among the thousands, often harrowing, accounts shared with the commission, it's people's stories that stand out.
"Those stories are very powerful," he said. "Basically, it takes guts to come forward and tell stories that are often extremely traumatic.
"And they are stories that we would like to see disseminated more widely, not because of the shock value, that's not the point.
"We don't want people with disability to be seen as objects of sympathy or for their stories to be presented because they're horrible.
"What we want to see is people explain their experiences so that other people can understand what the consequences of discrimination and that neglect can be."
One of the stories which sticks in his mind is that of Quaden Bayles, a young boy who lives with achondroplasia dwarfism. Quaden made global headlines at the start of 2020 when his mother went public with a video recording of her son as she was driving him home from school, inconsolable about being bullied at school.
He was heard saying he wanted to end his life, asking his mum to "give me a knife, I'm going to kill myself".
"He gave evidence and at the end of that evidence he was asked, what would you like to see change, Quaden," Mr Sackville said. "And then he basically said, 'I'd like to see people being kind to each other.' That message that Quaden gave, and listening to his story is just one of those things. It sticks in your mind.
"That's illustrative of the stories that people tell. And ... that it's not easy. When you hear the stories from people like that, it's the courage that they've shown in speaking out ... it's not easy in a public forum."
THOUSANDS OF STORIES
MORE than a thousand private sessions have been held since the start of the Disability Royal Commission in April 2019.
David Belcher, a convenor for the Community Disability Alliance Hunter, said he hoped people did not remain focused on stories about the "real extreme cases".
"Not that that they're not important," Mr Belcher said. "But the real extreme cases of abuse and neglect ... that's kind of nearly missing the forest from the trees."
Those extreme cases have occurred because all of the other pillars weren't in place, Mr Belcher said, as opposed to there being "just a couple of bad apples".
"The bad apples only exist because the support and the structure needed to bring people with disability up and make them full citizens isn't in place.
"Care and safeguarding isn't a do and don't sheet on the wall of your group home. That doesn't work. What works is building appropriate relationships between you, the support worker and the broader community.
That was particularly the case for people living in group homes, and the commission has heard many stories of people living in group homes whose needs have not been met, and worse.
The lack of safeguards in place in group homes was illustrated during the commission's 23rd public hearing held in May, which looked two group homes run by Life Without Barriers.
Life Without Barriers started out in Newcastle in 1995. It now provides services throughout Australia, with a revenue last financial year in excess of $755 million.
That growth is illustrative of the massive changes which occurred within the community services sector when the NDIS was rolled out.
The speed with which the scheme was rolled has come under fire for failing to ensure adequate safeguards were in place, despite the perceived need for timely delivery.
Critics also say that there has not been enough focus since then on that aspect of the scheme, which continues to be a work in progress.
HOMES IN FOCUS
RESIDENTS of two group homes run by Life Without Barriers shared stories about regular occurrences of resident-to-resident violence which were not properly managed, residents being discouraged and prevented from spending time alone with a romantic partner in their own homes, a resident relying on a flat mate to get dressed "a lot of the time" and spending a lot of time alone in the house due to staffing issues.
'Jennifer' told the commission that her daughter's diet and health were not managed properly leading to her being hospitalised.
Her finances were poorly managed, she was often put to bed at 7pm despite her wishes, and family members were made to feel uncomfortable about coming to visit her.
At the end of that hearing, 81 proposed findings were put to the commission, a number of which related to the NDIS quality and safeguards commission.
The next hearing will focus on the operation of the National Disability Insurance Scheme for First Nations people with disability in remote and very remote communities.
"That takes us into, to some extent, the organisation of the assumptions underlying the NDIS about the delivery of services and the market model and thin markets," Mr Sackville said.
"What we have done consistently with the terms of reference is to look closely at a number of examples of service providers and the difficulties that have arisen with particular service providers in the way in which they've delivered services, the abuse and neglect to which the people within their care in residential accommodation are being subjected to."
DISABILITY JUSTICE
PART of the work the commission is conducting involves the justice system, with one earlier hearing devoted to people who live with disability and who are in "effect incarcerated far beyond the terms they would've received for the conduct that would normally be described as a criminal".
"But these are people who have been found unfit to plead and find themselves in confinement for years and years and years, well beyond the period that they should have been incarcerated as the result of a criminal conviction.
"What we have described is the criminalisation of disability that people with disability, again, particularly people with intellectual disability whose responses to the police sometimes produce an assumption that these people are acting in a way that presents as criminal behaviour - resisting arrest, or whatever it happens to be.
"That's one of the things that we looked at ... the unfairness of a system that takes people who are unable to plead because of their intellectual disability and then basically leaves them in the incarceration system for many, many years.
"We've had very detailed evidence. And one of the gratifying aspects of that hearing was that one of the people involved is now back into the community. Now whether that would've happened without us well, other people can answer that."
At a second justice-related hearing later this year the commission will look at diversion programs.
"One of the consequences of a hearing we had, I think, and which can be attributed to us is that a program in New South Wales that has worked well, that was facing the axe, was in fact resurrected and has received funding to continue," he said.
"So that has been very much part of our work up to date, the over-representation of people with disability, criminalisation of disability, mechanisms for moving people with disability, intellectual disability, out of the justice system, and providing supports to people.
"If they do come in contact with the criminal justice system, ensuring that they have adequate protection, not just in the form of legal advice, but people who can provide support to them."
A theme throughout the Royal Commission has been the concept of reasonable adjustment and support in the context of the Disability Discrimination Act, he said, which applies equally in the context of the justice system or injustice system.
"That's something, that as a former judge, I want to see fixed up. I want to make sure that one of the outcomes of this inquiry is a sensible recommendation that courts can and should follow to ensure that they're doing their part to provide appropriate support to people with disability who come before them."
KICKING GOALS
IN looking at the commission's achievements to date, Mr Sackville says he believes the commission has been influential in shaping the attitudes of community leaders.
"I think we've had quite a significant influence," he said. "One of the things that does, I think, give me some encouragement and, for the people within the commission, optimism, is the number of things that have happened that can be directly attributed to the work of the Royal Commission."
They include, in part, the commission's reports on public hearings five and 12 dealing with responses to COVID and the roll out of the vaccine, and the recommendations that were accepted in relation to that.
"And that's something that we'll certainly come back to one way or another, but there are a whole series of things that have been done that may not be earth shattering in themselves," he said.
That includes $30 million in funding announced in April for the establishment of a National Centre of Excellence in Intellectual Disability Health, which could "fairly be attributed" to the commission's work.
CDAH's chief executive, Andrew Vodic, said that without the commission, many, many people's voices would not have been heard.
"My argument would be where there's a very, very long history of mistreatment, abuse and neglect, and there are really no strong voices available at any level of society, a Royal commission tends to become your only resort," Mr Vodic said.
"And if not a Royal commission, where, and for that reason, yes, it's very important. Yes. But I think we all would argue in modern times that the validity of Royal commissions is always going to be put into question because they are only a list of recommendations.
"And there is always the argument that the the calling of a Royal commission is often incumbent government's opportunity to not be questioned on their current policy and on current direction. That is the cynic in me.
"And I think the big thing that it does shed light on is that real culture of disempowerment that exists right throughout the disability spectrum. If there's anything that something the size of a Disability Royal Commission should be able to pull the lid off is that - that level of disempowerment and its impact.
"That would be my biggest hope from the Royal commission, that that is seen for what it is."
Mr Belcher agrees, that it is giving people who might not otherwise have had the opportunity, to have a voice.
"I think that's absolutely the case, that it's shining a light on areas that hadn't been seen before and also getting a gauge on the depth and breadth of the issue."
