Spotlight on Advocacy

Disability advocacy organisations around Australia are currently busy:

  • providing individual advocacy support to people with disability during the DRC processes
  • representing systemic issues through making submissions, or
  • providing information and promoting awareness among community members about contributing their experiences.

Advocacy at public hearings

Click on the video links below to hear disability advocates and self advocates speak at the Disability Royal Commission hearings. 

Barriers to accessing a safe, quality and inclusive school education and life course impacts

12 October

Panel of advocacy organisations:

Nikki Parker

Nikki Parker appearing at hearing

“There is this culture of compliance, it seems, where teachers are compliant to principals and the regional office backs the principals. There’s also a dramatic power imbalance. Individual parents trying to fight the very big Department of Education… So it’s a highly emotional, stressful period. A number of people today have used the word “battle” and that’s often a word that we hear from our clients…”

Michelle O’Flynn

Michelle O'Flynn

“What we have noticed, however, is the moment an advocate is engaged, there is a significant change in response from the school and from the Department with better outcomes for students.  So advocacy makes a big difference.”

Cecile Elder 

Cecile Elder appearing at hearing

“Parents tell us [the complaints process] is quite hit and miss and more than likely by the time a parent gets to the time of needing to actually call an advocacy organisation, they’ve already tried to resolve the issues happening locally for their sons and daughters… it’s absolutely not uncommon for families to turn up for a meeting …and to be there with five, ten staff from that particular school system that are actually then, in many respects, creating a real power imbalance between the parent actually advocating around the rights and the interests of their child and the school and their position on things.”

Mary Sayers

Mary Sayers appearing at hearing

“Across States and Territories there’s very few mechanisms which are independent where families can get issues resolved… allegations of abuse such as restrictive practices, we note that in many cases these are not independently investigated and school systems investigating school systems… this is compounded by a lack of funding for independent disability advocacy in each of the States and Territories, and in many States there’s no funding for education advocacy which can work with families to help resolve these issues.”

Psychotropic medication, behaviour support and behaviours of concern

22 September

Watch the Pre-recorded evidence of Raylene Griffiths (Council for Intellectual Disability (CID) project worker) 

Raylene Griffiths

Raylene Griffiths speaking at hearing

“Education and training is the key. Get the management to help people to better live together. Give people choice about where they want to live and who they want to live with. Match match people to live together who are more suited to living together. Like, different backgrounds, interests. Problems, not seeing eye to eye, making them feel welcome in their own house so that we can experience peace and quiet in the house we’re living.”

23 September

Independent Advocacy North Queensland Advocate Joanna Mullins 

Jo Mullins 

Joanna Mullins appearing at hearing

“…advocacy is a bit of a singular job. We’re not counsellors, we’re not advisers, we’re not lawyers. Our job, in essence, is to be the voice of people with a disability who for whatever reason cannot speak up for themselves. So we help them explore what they want to achieve, what their options are for achieving it and we speak up for them and help them achieve their goals.”

 

Watch the Pre-recorded evidence of Dianne Toohey (Manager) and Kathy Kendell (Disability Advocate) from Speaking Up For You (SUFY)

Dianne Toohey (left)

Dianne and Kathy giving evidence

“…we first get to know the person well. We spend time investigating the issue that they might come to us with about, and then we talk to people that may know them, know the person well as and what’s going on with that person. Then we develop an advocacy plan with a vision and strategies of how we’re going to work with that person. We involve the person as much as possible in all the meetings and all the actions we take, we talk about with the person first.”

Kathy Kendell

Kathy (right) speaking to Senior Counsel

“I think we come from an entirely different perspective that many people do, particularly service providers, and those who might be in senior positions trying to administer a hospital or different areas of government. We come from a perspective that respects a human rights framework and often while there is lip service paid to those principles and legislation, often we find that we’re up against a standing culture that sometimes reacts very differently…”

24 August 

VALID Advocate Dariane McLean

Dariane McLean

Dariane giving evidence

“…I will gather people around the table, really, to talk, and to try and figure out, you know, why the system around this person is falling down…More often than not the key question that nobody sort of raises is, has anybody asked the person what they want? What is, you know, what’s bothering them? And inevitably people will sort of be surprised at in a question because the person’s presentation is so complex that there’s an assumption that they don’t have a view on what they want.”

Queensland Advocacy Incorporated Advocate Courtney Wolf 

Courtney Wolf

Courtney giving evidence

“..what we have seen here at QAI, especially, is that the chemical restraint can limit a person’s freedom unnecessarily.…the way that we see behaviour is that it’s expressing a need, and when people are given chemical restraint it’s just subduing the symptoms of a behaviour rather than actually addressing an unmet need or someone’s desire for something. …medication can be looked at as the easiest way to subdue someone’s behaviour without actually going through and working with them and their family and their support team around how to best support them around their behaviours of concern.”

Experiences of people with disability during the ongoing COVID-19 Pandemic

18 August

Senior Counsel Assisting Dr Kerri Mellifont QC

Senior Counsel Assisting Dr Kerri Mellifont QC

[Advocacy groups] “speak about the challenges faced by them during the pandemic.  Advocacy groups have been instrumental in providing accessible and timely information. Many advocacy groups have been inundated with calls for help, ranging from people needing to get access to essential, personal requirements; people who simply could not get access to incontinence pads; they couldn’t get food; people who are trying to navigate and understand the publicly available information; people wanting to know what they can do to try and make sure that their child, a student with a disability, is provided accessible education and is simply not left to fall so far behind there is no hope of catching up.”

Disability Justice Australia Inc (DJA) Senior Disability Advocate Fiona Downing and People with Disability Australia (PWDA) Director – Media & Communications Eleanor Gibbs

Fiona Downing

Fiona Downing appearing at hearing remotely

“…because the advocacy sector is so drastically underfunded, we just don’t have the capacity to reach out to all the former clients and people we think might be in trouble.  Unfortunately there has been no emergency funding for advocacy in Melbourne, despite the issues that have arisen and in fact this financial year we’ve had a cut to NDIS appeals funding.  And this is right in the middle of the pandemic.  So advocacy services are just constantly having to turn people away.  People often can’t even get their names on a waitlist because we have to close our waitlist as a way of managing all the advocacy requests that are coming in.”

El Gibbs

“So for a disability advocacy organisation, how we’ve funded it, we all have a lot of time in rebalances sitting there, and other work has had to be put aside because the immediate crisis for people with disability has been so great.  So our individual advocates in particular have worked tirelessly while they have had their own challenges of working from home and working remotely…” – “We certainly know of people with disability who have been without phone and internet and have not been able to report that and only because of an existing relationship with advocates have we found out what has been happening and been able to intervene and I know other advocacy organisations have had that.”

19 August

Council for Intellectual Disability (CID) Senior Manager – Inclusion Projects Rachel Spencer

Rachel Spencer

Rachel Spencer appearing at hearing

“…so a lot of people with intellectual disability rely on public transport, whether that be to get to work or out in the community and to visit family and friends.  It is one of the biggest issues that our membership and our advocacy group raise.  So it’s not surprising that it is still an issue during this COVID period.
People are nervous about, I guess, being in public places and in confined spaces.  They are concerned that other members of the public won’t necessarily respect the rules or the guidelines around physical distancing and so there are the risks for people who are actually going to still use public transport, but then there is the risk for people who won’t use it and, therefore, become more isolated.”

Women with Disabilities Victoria (WDV) CEO Leah van Poppel and Every Australian Counts Campaign Director Kirsten Deane

Leah van Poppel

Leah van Poppel speaking, with Auslan interpreter in corner of screen

“…whenever we talk to women with disabilities, one of the key issues that comes up is isolation.  And that’s isolation from services, it’s isolation from supports like family and friends.  It is just a general lack of connection sometimes to the outside world.…more women are telling us that they have fewer support workers or fewer family and friends coming to their homes when they are really worried about the complications of COVID and the effect that it could have on them.  They might die.  So that imposes more isolation on women who may already not have many connections at all.”
“The more advocacy services and safe spaces for women so they are supported in a range of different ways throughout the pandemic to reach out to women, the better, because there may be instances where women are not able to disclose violence by picking up the phone and calling the Family Violence Service.  But if they have access to social gatherings, if they have access to advocacy around disability, they are given other safe spaces.”

Kirsten Deane

Kirsten Deane with Auslan interpreter in corner of screen

“…in addition to the NDIS issues, we need more funding for advocacy, both systemic and individual advocacy. During the pandemic I had cause to speak to a number of advocacy organisations either to refer people for help or to share information and resources. And I am aware that many advocacy organisations have closed books and some of them have even closed their waiting list. I think in the middle of a global pandemic when people urgently need help, that isn’t acceptable. We also need funding for systemic advocacy because it is those organisations that are working with government to make sure that government responds appropriately and that people aren’t left behind.”

CID Member and Self Advocate Anthony Mulholland

Anthony Mulholland

Anthony Mullholland with his support worker, being interviewed by Kate Eastman SC - Caption "And you're a self-advocate"

“We would go to the shops.  We would do banking.  We would do our post shop.  But everything’s now changed during the coronavirus.  And there were regulations …Obviously it’s hard to adapt to change, and I found it really hard because I’m not confident in using online, I’m not confident using technology.  I’d rather see somebody face‑to‑face.  And that’s what a lot of my friends would like to do.  And it also gets them out of the house, because a lot of them are lonely and we live by ourselves, like me, and we just want to meet people.  And so interaction in the community was something that I’m concerned about, particularly during coronavirus…”

Watch the Pre-recorded evidence of Speak Out Tasmania Self Advocate Kalena Bos

Women wearing yellow top being interviewed by lawyer

…the Premier, when he was talking on the TV, it was very confusing and hard to understand… Speak advocates did a Speak Out Live every night at 5:30 … On Facebook… they told us what we could and couldn’t do… they also showed us how to get on a bus, but, to be safe.

Health care for people with cognitive disability – Sydney hearing

18 February

Council for Intellectual Disability (CID) CEO Justine O’Neill and CID project worker Jack Kelly 

Justine O’Neill 

“When people with intellectual disability are able to lead and make decisions, then we’re all able to use our rights and participate. And we need to hear directly from people with intellectual disability about how to do that and what good support needs to be. I think in the context of this hearing around health, we’re going to hear a lot of stories about what happens when people are not involved in their care, when the people who support them are not heard, and the really negative consequences that comes from that sense of people with intellectual disability just being to the side and not participating in their own lives.”

Jack Kelly

“I always think it’s really important to just trust your inner self, because you’re you for you. Like, it doesn’t matter what other people say or do and … actions; it’s just important that you make the right decisions for you no matter what, whether it might be health that we’re talking about today or in another area in your life… I’ve seen a lot of people disheartened because they’re not getting the choice and control that they want, or they get frustrated because another person is making that decision for them.”

25 February 

Council on Intellectual Disability (CID) Senior Advocate Jim Simpson 

Jim Simpson

“…our approach to our work is to very much be informed by those things that you mentioned, that the experiences that people with intellectual disability tell us about, the experiences that their family members tell us about are absolutely key to our being and our advocacy. But the – complementing that with working with professionals in the field and being able to rely on the research base which has gradually developed in relation to health care, for example, provides an invaluable combination to then inform the strengths and strategies for our advocacy.”

Homes and living – Melbourne hearing

4 December 2019

Victorian Advocacy League for Individuals with Disability Inc. (VALID) CEO Kevin Stone presented with Alan Robertson

Kevin Stone

Kevin Stone appearing at hearing

“…our advocacy has developed and our networks have developed right through group homes particularly across metro but across the State and we empower people to set up their own resident meetings and – and talk directly to management about the issues that they encounter.” 

Alan Robertson

Alan Robertson

“…that was our hell. Staff were allowed to do what they like. Bash you up, clip you over the ears, do this, do that.” — “Meals same, meals, well, haven’t got the choice of meals. When I was put in an institution, there was no choices. In those days you were given what you were given. Was – I think it was fish and chips Friday lunchtime. Nothing like what you’ve got now. As I said before, you’ve got freedom now, and that’s how it should be. I’ve been lucky in my life…. everyone behind me, the last few years, see inside of me and the outside of me, you see the difference where – how do I explain – I’ve become a bit more mature, because I’m out and I’m living in the community.”

5 December 2019

Panel of advocacy organisations:

Nadia Mattiazzo

Nadia Mattiazzo at Homes and Living hearing

“Women with disabilities who are experiencing violence whether it be in group homes or in other situations, we need to listen to them, we need to listen to what is happening and we need to believe them. We need to develop gender sensitive approaches. Understanding the – the differences and the needs of women with disabilities.”

Sarah Forbes 

Sarah Forbes at Homes and living hearing

“I think we are constantly both shocked and dismayed as advocates at how little people understand about their rights. They do have rights that they don’t know about, and that they don’t exercise. They also have experiences of attempting to exercise their rights and not being respected. Or in fact being retaliated against for doing that. Being laughed at for suggesting that they should be able to make certain choices. Having certain choices used as collateral, as punishments. So I think there’s – people receive very mixed messages. They receive the message in Victoria that “It’s OK to complain”, but what happens when you do is often not what was promised.”

Pauline Williams 

“…the group home model doesn’t really lend itself to discussions of rights because, in reality, people’s rights aren’t respected and – I mean, we have terrible cases of abuse and violence that we advocate for people to get resolutions to, and time and time again, we find that there’s just blockages. That it takes, sometimes, years to try and get resolution when people are actually in situations of violence and abuse. So it’s minimised when people complain. No resolution comes; no action is taken. So why would anyone think that they had rights. And – and we find that, as advocates, that it’s just so frustrating when, you know, we’re constantly trying to push for solutions and there aren’t any.”

Colin Hiscoe

“…yes, we are here, we are coming, we are talking about what our knowledge and experience is of people with a disability in group homes. Fantastic, great. Congratulations. Well done. Pats on the back all around.
But I don’t think that you are getting to the real people that matter. This Royal Commission is about people in group homes. I think you need to get there into the group homes. The biggest problem might be that no matter what you do, the people there are going to be really scared, they’re going to be afraid, they’re frightened of retribution, they’re frightened of being in trouble, they’re frightened of being hit, whatever, and they’re really scared.”

Naomi Anderson

Naomi Anderson at the homes and living hearing

“For people with disability to be free of violence, abuse, neglect and exploitation, they need to know that the community has their back. They need to know that when people do things that are unlawful or illegal that they will be protected and that action will be taken to ensure it doesn’t happen again. And until that happens, we’re letting everybody down.”

Education and Learning – Townsville hearing

4 November 2019

Independent Advocacy North Queensland CEO Deborah Wilson features in a panel on inclusive education 

Deborah Wilson 

Deborah WIlson at Education and learning hearing

“… we see all the time – because the child’s disability is not taken into account, there – there is no inclusion. That does develop extra behavioural issues. These behavioural issues lead to suspension time and time and time again. There is always the excuse, you could say, that there is not enough resources, there is not enough funding.”