Not being heard creates more vulnerability in the already vulnerable

Project Lead at Our Voice, a group of people living with an intellectual or learning disability who meet once a month, Karen Rogers says that for people with disability not being heard starts small and then moves to things like not feeling safe. 

“Some people who have been to support groups in the last few years didn’t even know that they had rights. They didn’t even know they had basic rights to say ‘I don’t want fish tonight because it makes me sick’. They just have to eat what’s on their plate, and it seems bizarre in this day and age, but it’s the fact that this sort of thing still happens.”

Not being able to speak up or be heard creates vulnerability in a group who are already living in vulnerable circumstances, especially as they are often not provided with the opportunity to let their voice be heard. 

“Everyone needs to be able to stand up for themselves, but often our guys don’t have the tools and don’t have the means to. Some people who live in supported accommodations don’t have a phone and the only phone they have access to is the phone in the office in the house, so they aren’t going to be able to go into the office and make a phone call about not being safe or not being treated nicely,” says Ms Rogers.

Inclusion is also something that is not possible when people with disability are not heard, says Dignity Party President, Rick Neagle.

“What [not being listened to] does is it dehumanises people. It actually disempowers them and represents exactly what we are not trying to achieve here in this world which is to include everyone. So when someone speaks on behalf of a person with a disability, everyone assumes straight away that they can’t speak… everyone. Unless you are someone that is actually someone connected to the sector.”

One example Mr Neagle shared is when he and former Dignity Party parliamentarian, Kelly Vincent were travelling to Melbourne, Ms Vincent was not spoken to by airline staff. Instead of addressing her they spoke to him and her carer.  

“I [again] said to the guy ‘she can speak for herself, she is a person with a high IQ, quite literate and is a member of parliament’. He then got down on his knees and spoke to her in baby talk and Kelly is very much used to it, and she still gets a lot of that behaviour.”

Providing the opportunity for people with disability to speak and to be heard is essential for making sure that people with disability are protected and heard is up to Government, says Mr Neagle. 

“It’s up to Governments to make sure there are processes in place to protect people with disability in those situations. Granted, there are individuals who need assistance either through technology, a guardian, or a carer or parent to do that.

“In those situations where the person’s right to actually have inclusive communication is taken away from them then you need to establish frameworks such as the NDIS (National Disability Insurance Scheme) Safeguards Commission, the community visitors scheme, the Office of the Public Advocate, or other sorts of other systemic institutions that can help these people. Because I don’t know what happened with this situation but for [just one person] to be seeing [Ann Marie Smith] for twelve months is really a fault of the Government and a lack of systems in place.

“If you don’t understand what’s happening to you, you’re always going to feel vulnerable, and that’s why you need a Safeguards Commission.” 

The Community Visitor Scheme provides support and visitations to people with disability adn older people in Government settings, but Mr Neagle says when funding was cut, it lost its protective powers. 

“If you truly want to protect people surely a Government wouldn’t take away funding in this sort of situation. Not the Community Visitor Scheme doesn’t give them the ability to go to someone’s home as such, but the NDIS Safeguards Commission should be powerful enough to really visit anyone at any given time if they are living with care under an NDIS plan.” 

Ms Rogers also expressed concern about the Community Visitor Scheme and its lack of power and the need for people to be able to talk to someone independent regularly. 

“Ian, our Chairperson, has been liaising with the minister about it and is really concerned that the Community Visitor Scheme [and the fact] it has been almost de-scaled.” 

A needed path forward for disability sector 

An online survey by Flinders University in response of Ms Smith’s death, sharing insight of people within the disability community, including people with disability, their families and carers, has delivered harsh criticism a suggested a path forward, 

The online survey was conducted by Dr Betty-Jean Dee-Price, a researcher in disability health and education, and Flinders University’s representative on the South Australian Health Performance Council Disability Project.

The report titled A South Australian woman dies from long-term abuse and neglect: A disability community response has been presented to the South Australian Premier’s office.

Dr Dee-Price hopes the report will ensure the disability community has a voice in shaping improvements so that similar incidents of neglect are not repeated. 

“There were comments made by respondents indicating their knowledge of ongoing poor care and abuse for people with disabilities and in aged care,” says Dr Dee-Price.

“This is alarming, but the recipients go on to suggest what might be done to prevent poor care in the future.”

More than a third of the people who responded to the survey say they were not surprised that such an awful death occurred with 60 percent of recipients believing the issue of people receiving care being harmed physically or mentally by the people responsible for their care occurs often.

More than 85 percent of respondents believe South Australia needs a disability commissioner, commenting that such a commissioner needs “qualities focused on human rights, social justice, and empathy” and is “someone with the strength to hold their ground and drive change”.

Respondents to the survey provided a pathway to the future and suggested much-needed changes for the disability sector. 

There were strong calls for over-arching safeguards and better coordination between the South Australian State Government and Federal Government systems, including improved methods of accountability.

Respondents also commented on more effectively recruiting staff who are trained and personally orientated towards care work.  

Other recommendations focused on:

• The accountability of service providers in both care support and health and allied health services.

• Community awareness and development with a focus on building stronger communities and increasing disability awareness.

Dr Dee-Price says, “If a positive step forward could be made on behalf of Ann Marie Smith, it would be that the experiences of poor care and abuse, as captured in the descriptions of the survey respondents, might be addressed.

“The thoughtful and generous recommendations made by the people who responded to the survey provide a strong beginning.”

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