Shocking levels of mistreatment toward a group that has historically been ignored and hidden within society are coming to light, but people with disability believe awareness is not enough and are calling for justice.
“A lot of it happens within the family network and institutions,” says Dr. Annmaree Watharow.
Annmaree is a Ph.D. student, former general practitioner, and has a degenerative condition that involves the loss of both hearing and sight.
According to Annmaree, not even the NDIS is capable of providing adequate care.
“There’s no continuity and no care… you don’t get those two things with the NDIS,” she says.
The Royal Commission into the Abuse, Neglect, Violence and Exploitation of People with Disability is bringing this systemic mistreatment and exclusion to the fore by allowing people to share their stories.
“Because I’m very articulate, people assume I don’t have impairments, but when you can’t see and can’t hear very well it becomes incredibly difficult,” says Annmaree.
Annmaree has a degenerative sensory impairment resulting in one degree of central vision, which she describes as being a ‘greeny colour’, and not being able to hear below 90-decibels.
To put that into context, regular vision is 180-degrees and 90-decibels is equivalent to loud traffic or shouting conversation.
To be able to complete her Ph.D. Annmaree has an accessibility assistant, Sophie, for 35 hours a week who accompanies her at university.
Without Sophie, Annmaree wouldn’t be able to navigate the campus, use the telephone or use the computer to find documents.
“Last time I went somewhere by myself I got hit by a car and that was just up the top of my street,” she says.
This inherent vulnerability of people with sensory impairments and her own lived experience is what fuelled Annmaree to undergo a Ph.D. on the neglect and mistreatment of people like herself in the healthcare system.
Annmaree describes the mistreatment and neglect she experienced in hospital
Many of us may not be aware of the battles faced by people with disability living in a world where accessibility is not embedded at all levels of society.
Disability support worker, Melanie*, says that she herself only identified accessibility as an issue this year, despite working in the sector for the past five years.
“I’d never really thought about it before, but it would even be hard to get into my own house because there are a number of steps and only a narrow door,” she says.
“We are a very ableist society and maybe people don’t realise that because they don’t have much interaction with people with a disability.”
However, accessibility extends further than the design of buildings and public spaces.
Dr. Sarah Wayland is a researcher at the University of Sydney Centre for Disability Research and Policy as well as a lecturer in Health and Lifelong Disability after having worked as a social worker for 20 years.
“People with disability were very much hidden from the community, they were shut away so able-bodied people didn’t have to deal with the implications of seeing those who might be perceived as having lives that were less than them,” she says.
This institutionalisation of people with disability was based on the premise of the medical model, which viewed physical impairments as something to be ‘fixed’ through treatment.
The medical model pervaded until thirty-eight years ago when the 1981 International Year of the Disabled Persons was announced, recognising the right for people with disability to advocate for themselves and make their own choices, which in turn brought about the deinstitutionalisation movement.
However, Dr. Wayland sees the lack of engagement from broader society during this transition as being largely responsible for the abuse and neglect we are seeing today.
“Then there was a push to move people out of institutions and into the community, but we didn’t address the underlying issues around vulnerability and risk.”
This graphic shows the changing attitudes toward people with disability over time and the government policies that have coincided with the fight toward recognition and respect.
There is hope that the establishment of the Royal Commission into the Abuse, Neglect, Violence and Exploitation of People with Disability will uncover these underlying issues and incite change in the right direction.
One area that needs to be overhauled in order to bring about change is collecting national data on the lived experiences of people with disability.
As a policy researcher, Dr. Wayland knows how important comprehensive data is in these circumstances.
“From a policy perspective, it’s very difficult to generate effective policy without proper national data because if you don’t know how many people are impacted then how can we create policies to help protect those people,” she says.
In an attempt to counteract the lack of data on abuse and neglect rates of people with disability, the Disabled People’s Organisation Australia (DPOA) conducted a study of their own, which showed that people with intellectual disability are ten times more likely to experience violence than people without disability (DPOA, 2019).
The likelihood that a person with disability will experience violence varies depending on numerous factors, including diagnosis, as shown by the graph below.
However, recognising that people with disability are individuals with very different needs is something that Annmaree says is widely misunderstood.
“My first NDIS coordinator wouldn’t let me be deaf-blind, I had to pick one or the other, apparently I couldn’t have both,” she says.
“You have to pick your battles… I don’t have the energy to fight every single person that refuses to make it easy for me to be heard or get what I need, otherwise I just wouldn’t get out of bed in the morning, it would be too hard.”
Annmaree describes the lack of care she experienced with the NDIS.
Annmaree was able to make a submission to the Royal Commission on Aged Care with the help of Sophie to read and write, but this assistance is only temporary.
“I only have an assistant until I finish my Ph.D. and then God knows what I’m going to do then,” she says.
The Disability Royal Commission website provides a downloadable form to fill out in order to make a submission, which would be completely inaccessible to Annmaree without an assistant.
“The Royal Commission does say that they will provide whatever is needed for people to be heard, so I’m assuming they will provide interpreters for people that need it or assistance, but I’d wonder how that’s going to work in real terms,” she says.
Annmaree explains the difficulties she had in completing a submission for the Aged Care Royal Commission, even with the help of an assistant.
“I do get help, but it’s not easy… once we got to the end and were about to submit, all of a sudden we found this small print section that said ‘if you want an accessible form, you can contact us by phone,’” she says.
Even if Annmaree could have read the small print, using a telephone to call the office to get an accessible form would have been extremely difficult, if not impossible without assistance.
Almost 20% of Australians have a disability and this number is increasing (Australian Human Rights Commission).
Despite this, people with disability say not enough is being done, particularly by the NDIS itself.
“People with disability have difficult times in almost every space that they go into because we don’t have inclusion and accessibility embedded at all levels of society,” says Annmaree.
“The NDIS can’t do it…Wow… I find that actually amazing that the institution set up to provide disability support services can’t be accessible.”
Senator for Western Australia and disability rights advocate, Jordon Steele-John, knows this all too well through his lived-experience with disability and in his push to establish the Royal Commission so that people with disability can be heard.
To make a submission to the Royal Commission, many people with disability require assistance in doing so.
However, disability worker Melanie* says that she wasn’t even aware of the Royal Commission itself, let alone how to assist a person with disability in making a submission.
“To be honest, I had no idea what the process was… I think I found out about the commission on TV, it wasn’t talked about at work,” she says.
There is a need for people with disability to be given the opportunity to tell their story and to be supported in doing so.
Dr. Wayland believes that disability service providers have a responsibility to allow this to happen.
“From a human rights perspective, you can only speak up about your experiences if you know you’ve been invited to speak up so if the only way of doing that is via a service then I do think the service has a duty of care to let people know,” she says.
“There need to be clear guidelines from the NDIS about what to do, but also I think organisations from the ground up need to be committed to standing up and ensuring people who are silenced have an opportunity to speak.”
When contacted for comment, the NDIS declined on the basis of rejecting requests from students.
Whilst there is an incident reporting protocol for NDIS service providers, the stories that are emerging from the Royal Commission show that abuse and neglect are largely being hidden.
“There’s no continuity and no care… you don’t get those two things with the NDIS.”
Dr. Annmaree Watharow
Working as a disability support worker, Laura* knows first hand the prevalence of mistreatment.
“A woman I cared for came back from respite care with bruises and was very distressed, she seemed traumatised in some way,” she says.
“The mother believed she had been sexually assaulted and she did everything she could to get it resolved, but there was not enough evidence to prove anything.”
Laura* says she received no training for her NDIS supported role and wasn’t aware of how to submit an incident report.
“There weren’t really any protocols and I never did any sexual violence training or anything like that,” she says.
“I have a working with vulnerable people card and a working with children card, but all that means is you’ve never been charged with a crime, so it’s not exactly thorough.”
Like Laura, Melanie* works as a disability worker on a casual basis and says she did not receive any training on incident reporting or abuse and neglect.
“Considering the workforce is becoming more casualised there could be more holes if you think about it,” she says.
As of March last year, the disability workforce showed an increase in casual workers to a total proportion of 46% (Australian Disability Workforce Report February 2018).
As a casual worker herself, Melanie recognises the downfalls of this increasing trend in providing continuity of care and adequate support.
“People with disability can go through so many workers in their lifetime, making them more trusting, which can lead to being more vulnerable to neglect or abuse,” she says.
“We do have clients who are labeled as high risk because they are so trusting and social that people take advantage of them.”
The inherent vulnerability of people with disability to abuse and neglect means more is expected of the workforce who works with them.
However, a recent study shows the high turnover of casual workers in the disability sector is conducive to lower employee engagement and disrupted continuity of care (Australian Disability Workforce Report February 2018).
Annmaree says she feels exhausted by the constant battles involved with trying to receive adequate care.
“What you do get you have to jump up and down, long and hard for, and you constantly have to deal with new people since there’s no consistency, no common knowledge and no embeddedness.”
The Royal Commission inquiry is something that the disability community has fought long and hard for and hope will provide justice.
Dr. Wayland is well aware of the complexities and sensitivities in dealing with such a systemic issue but sees the commission as a positive step in the right direction.
“It’s nice to see the conversation starting to happen because a lot of people have been concerned about these things for a long time, but sometimes there needs to be a national spotlight for things to change,” she says.