SAFE: Self advocacy for Effectiveness

This session was part of the NDIS and Advocacy conference held in Geelong on 4 December 2014.

Sue Smith, Self Advocacy Resource Unit (SARU) Coordinator, moderates a discussion about  how participants can best exercise their rights under the NDIS: from having real and meaningful input into their individual plan through to informing the way the NDIS works and advocating for systemic change. Panellists will discuss different self-help advocacy tools, including fact sheets and the work of the NDIS self-advocacy working group.


  • Ian Parsons, Research Fellow, Centre for Rural and Regional Law and Justice, Deakin University
  • Peta Ferguson, President, Brain Injury Matters
  • Neil Cameron, Founder, United Brains


Listen to podcast



I would like to welcome our three great speakers for the day you might think there is only two.

There is Ian Parsons who i will read his bio in a tic, Peta Ferguson and we have virtual Neil Cameron who is on video because he couldn’t be here today.

We’re going to go on a bit of a journey today around self-advocacy. We’re going to start with Ian, who is going to present on the NDIS rights fact sheets that have been developed by Fitzroy Legal Services, Hobart Community Legal Service and Redfern Legal Services. Which provide information about rights that people have under the NDIS and of course in taking a self advocacy journey individual self advocacy, information is power and accessible information is vital to people to have the information they need to have a real say within the NDIS.

Then Peta is going to take us on the journey to group self-advocacy and she is going to talk about why group self-advocacy is important. Between us Peta and i are going to give an overview of what some of the group advocacy are doing in victoria. While it might not necessarily relate to the NDIS i think it’s important people have an overview of the depths of the work that self advocacy groups are doing throughout the state on minimal funding and with no pay.

When you hear from virtual Neil, he will talk about how self-advocacy groups are really keen to work with people and to have a say and have a real input within the NDIS.

If you have an understanding of what the types of work groups are doing in victoria, it can help you in thinking i wouldn’t mind finding that group and working with them around some of those issues.

We will finish with virtual neil who will talk about the NDIS self advocacy working group, which is a group, that self-advocacy groups have set up as a way of ensuring that they have a voice within the NDIS.

We will start with Ian Parsons. I would like to introduce Ian. Ian currently works as a Research Rellow in the Centre for Rural and Regional Law and Justice in Deakin’s University School of Law. His background is community development, research policy and law reform in both public and community sectors with a major focus on human rights issues of people with disabilities. He also worked as a Ministerial Advisor to Honourable Sherryl Garbutt, under the Brack’s Labour government and he has also worked in research and policy capacity at the Victorian Law Reform Commission primarily on the review of Victoria’s guardianship legislation from 2009 to 2012. He has written several books on disability rights issue all published by Villamanta Publishing service.

Welcome Ian, i will pass over to you.

Thankyou Sue.


Thanks, it’s really, really nice meeting up with a lot of people I’ve been out of touch with for a while. It’s really good to be here, thank you for inviting me along and asking me to be part of today.

As Sue said, the fact sheets that I’m here to talk fairly briefly about were developed as a joint project by Fitzroy Legal Service, Hobart Community Legal Service and Redfern Legal Service. It was really based on the very thing that Sue just mentioned the idea that knowledge is power.

When you’ve got a new scheme like the NDIS being set up it’s really important that people have as much knowledge and information as they possibly can. Initially, the project was funded by the Federal Attorney General’s Office who at first were a little unsure for the need of this stuff because they had a view that the NDIS and the whole process of the NDIS itself would be so empowering for people with a disability that nobody needed information about their rights and nobody certainly needed any advocacy.

Well we all know that’s just not how peoples experience really is. So fortunately, they agreed with that and gave those centres money to develop these rights sheets. There is 11 of them, 11 fact sheets and they’re on I’m sorry I didn’t bring a slide or something with the website and details. It’s It’s fairly easy to remember,

You will see there are 11 fact sheets and they’re very basic really. They’re hopefully in fairly plain English. The topics they cover advocacy, making complaints, contracts because often you have to enter into a contract when you become a participant in the NDIS, dealing with service providers, decision making, discrimination, eligibility, access to information, needs assessments, what to do when the supports you want are not there and negotiating who provides services. As well as plain English, fairly plain English the fact sheets on each of those topics,

there is also an easy English version that covers the whole lot of topics on one sheet and they’re also available in auditory format. I think there is a hope they will be available in video format a little further down the track. There wasn’t enough money to be able to do that quite yet.

The information on each sheet it basically gives some information about what the NDIS Act says on that particular topic about what your rights are. What your rights are in a broad sense, not just in the sense of what does the law say but what’s a reasonable thing that you as a person using the NDIS should be entitled to expect.

It talks a bit about that in a fairly broad way and then goes on to talk about how you might draw on either the NDIS legislation or other bits of legislation like the disability discrimination act or other pieces of legislation, even the UN Convention to argue for those rights if you don’t feel you’re getting them. And a few tips on what you might do to do that, as well as what you might need to take into consideration.

Some of these things are pretty complicated battles to fight if you have to fight the battle, as I’m sure a lot of you have already found out. Sometimes you just need a bit of information about what might be involved before you make a decision about how far you want to take it.

Some of it is pretty technical information because it is about the law. The law itself is a bit complicated. It’s also fairly new so a lot of it we don’t really know yet just how it’s all going to play out. That means the information is sometimes not quite as easy to make sense of as you would like it to be or we would’ve liked it to have been.

They’re not trying to say though while these fact sheets are written for someone who is using the NDIS or written for someone who wants to use the NDIS, they’re not meant to give the message that you should try and fight this battle alone if you have a battle you want to fight. It’s more about giving you the information so you are armed with it so if you choose to get the support of an advocate you’re well informed about it as well.

Sometimes the advocate needs to be well informed about it too. They’re written also for advocates to read but they’re written for the person, the participant in the NDIS or the person who wants to be so the advocate thinks of the issue from that person’s perspective as well. They’re meant to empower the person with the disability in the process.

Sorry I’m not checking my email, I’m just checking the time. They don’t provide legal advice, it’s important that distinction is clear. They’re just set to provide information and a lot of the information they provide is tentative. It’s early information because we’re very new in this whole process of the NDIS at the moment. A lot of it is yet to be tested.

They were written with the view that it’s good for people to feel empowered from the beginning as much as possible and where possible where the law is not clear that people who are trying to fight for their rights are the ones who help shape what the law ends up meaning in practice. They try to push the envelope a little bit, not over the top, a little bit because it’s an untested area of law.

It’s important to just remember that while the whole focus of the NDIS centred on the person it’s obviously greater, it’s what so many people have been fighting for for years and years and years to have a system that looks at everyone as an individual human being and plan supports around that. That’s obviously great but I think it’s also important and this is something that the fact sheets themselves don’t address, a lot of the struggles people face in trying to get the support they’re entitled to and the support they want are struggles shared by a lot of other people too.

While the individual focus is really good at the NDIS there is a lot of common issues too. I think it’s terribly important that we don’t forget that. That was really, really clear in the consultations we did when we developed these papers.

We went to each of the states that were involved and had forums both with people with disabilities and with advocates to get a sense of what people’s issues were. That’s how we came up with the topics we did. People were so often saying very similar things, encountering very similar problems from the one person to the other and often from one state to the other.

The importance of working together in advocacy, so no matter how much information you get about your rights and your issue in negotiating your way through the NDIS I think it’s terribly important to remember you’re part of a bigger picture. That’s why networks like the network that BDAN has available, set up for people in the Barwon area is really important.

Trying to promote our fact sheets as much as we can because we think they’re hopefully of some use, they can’t solve that systemic issue. Really, urge people to continue to network with one another. Realise that a lot of the changes that will continue to need to be made in a system like the NDIS, will only be made by people banning together and networks like BDAN are great for enabling that to happen.

That’s all I really wanted to say at this stage. That’s a quick overview of how the sheets were put together, what they try to do and what their limits are. Thanks.

Thanks Ian and there will be chance for questions later, I want to thank Ian for the perfect lead into the next session – talking about common issues and the need for people to unite because that’s a lead in to what self advocacy groups are all about.

They provide that opportunity to come together, talk about the common issues and unite to work on systemic change which is what you will hear about starting with our next speaker Peta.

It’s my great pleasure to introduce Peta Ferguson. Peta was studying arts/law in Melbourne University in 1974. She then dropped out and hitchhiked to the Northern Territory where she worked for a few months as a governess and a meat worker on a cattle station.

After some further travel she returned to Melbourne and took a deliberate overdose of subscription medication. The effects were substantial, she didn’t talk for 3 years or walk for 4 years. After leaving the institution where she lived, peta wrote, “lived in” quote marks for 5 years; she married, brought up 3 step children 24/7 including one child with aspurgus.

She has a biological child and divorced then years later. She then in 2007 discovered the existence of Brain Injury Matters, a self advocacy group run by people with an acquired brain injury. She joined and has been the President of Brain Injury Matters for the past few years.

Now Peta has asked me to jointly present this session with her and it will be a question and answer approach. Firstly, Peta asked me to give just a quick introduction to self-advocacy groups.

Self advocacy groups or the self advocacy movement evolved out of the civil rights movement in the late 60s, early 70s and has a long and proud history of working to instigate major changes and working on systemic issues. Self-advocacy groups are run by and for people with disabilities who have joined together to support each other to have their voices heard. Which fits so nicely with what Ian was saying. And they work together to make sure they have the same rights and opportunities as everyone else.

Victoria is one of the leading states in supporting self-advocacy and the recent regrowth of self-advocacy.

I am going to start by asking Peta what is Brain Injury Matters.

Well, Brain Injury Matters is the only self-advocacy group run for and by people with ABI in Australia, possibly the world. Nothing to be proud of, it amazed me and irritates me but we’re currently trying to establish or assisting people to establish a group in the south metro region.

Peta, how did you become involved in Brain Injury Matters?

In 2003, my son started school and I had plenty of time so I commenced doing a Cert 4 in disability. That existed of what was mentioned and I joined.

As an individual, how has being part of a self advocacy group helped you on a personal level?

Joining BIM was a true revelation. There were others like me. I had spent the previous 10 years feeling lost and lonely. I thought I was doomed to a solitude existence apart from my son but I have become so empowered, not aggressive I hope.

When I walked in the community and I used to and shopkeepers, have written notes telling my wants and I spent hours and hours walking around the supermarket trying to locate something rather than asking for it. Now of course shopping is one hell of a lot easier. I don’t have time anyway.

I have absolutely no quam politely asking someone for AC and as BI is the invisible disability there is so much community ignorance out there. People tend to be a bit taken a back.

I also by joining BIM, I learnt how to cope with things from other members and how best to approach something. I’ve learnt how beneficial Government initiative was widely advertised.

Peta moving on from the individual, what are the works and projects BIM are working on to make change happen in supporting people to have a say, improving service provision and building communities.

We apply for grants all the time of course to create awareness and to assist people with a ABI. We obtained a sizeable grant from the Health Department and with the money, we are producing two kits.

The first Hitchhikers Guide Through the Brain, Maze which is a kit, aimed at the recently diagnosed and perhaps not newly diagnosed with ABI. It will contain lots of things including a very extensive contact booklet. Some contacts will get updated eventually but there will be so many hopefully, in years to come that will be relevant in each area. A diary/journal for those with memory problems or whatever and a booklet of personal stories reassuring the individual that they’re not alone and yes plenty of others have been on this journey. The whole kit will have an overall positive air rather than this is the end of your life. I’m Peta Ferguson Mark 2 and I am much happier of course. Plus maybe I learn before.

Secondly a well-produced a speakers kit which will a member of BIM to go out in the community and educate the masses. Sure, we can already do this but the money (inaudible) and therefore impact to our presentation.

Besides the kits, we are educating ABI’s support group about the importance of speaking out. We are also working with the Human Rights Commission and working closely with the local council, the Melbourne City Council and the Office for Disability. So can you please tell them what the group are doing?

Look yes there is currently 30 self advocacy groups that are supported by SARU, there is more than that in victoria. I’m going to talk about a few very quickly so you get a sense of the incredible work they do unpaid or with minimal funding around the state.

Deafblind Victorians who are here today and they’ve got t-shirts to sell; they are run with no funding. They get a small amount of i think self help grant funding but apart from that no funding. They’re unpaid. What they’ve done still completely amazes me.

They met with Julia Gillard to inform the government about the issues faced by people who are Deafblind but also to talk about the NDIS. They have been working with melbourne city council around making the city accessible for people who are Deafblind. They have developed a whole community education package, which is called Deafblind World.

Again, this is something that i think that people within services, people working within the NDIS or DHS; this is a really important role that groups can play, is coming out and running Deafblind World so people get a real sense of the issues faced by people who are Deafblind. It’s very interactive and is a real awareness raiser having done it.

They work informing services about the needs and speak at national and international conferences. In fact, they were the first people; the Deafblind Victorians were the first Deafblind people to ever speak recently. I don’t know heather or michelle might be able to tell me, 2 or 3 years ago to speak at the national Deafblind conference, which is….that it took so long is telling. That’s Deafblind Victorians.

Reinforce probably a lot of you have heard of, they’re the longest running self advocacy group in Australia again with minimal funding and all the work the members of Reinforce do is unpaid. They work in the Shut In campaign to close institutions. They’ve developed self advocacy training and they’re now currently going out and running for staff training about peoples rights in group homes. They’re really passionate about that and believe so many rights aren’t happening in group homes. They’re instrumental along with Brain Injury Matters in setting up the newly formed Victorian Self Advocacy Network.

The Powerful Parents self advocacy group has only been going 2 years and is a dynamic group. They are sitting over there and really, really want to have a big voice within the NDIS and get the issues of parents with an intellectual disability heard because it’s a group run by and for parents with an intellectual disability.

In that two years they’ve recently made a dvd, which is available for free at the table called, How Would You Feel. They’ve had meetings with child protection, they do mutual support. Similar to what Peta said a lot of the parents that come to that group say, I thought i was alone, i was the only person this was happening to. Susan has been on tv, on sbs, on webinars and radio and they’ve been working with service providers and they’re about to hold an important forum next year informing government and child protection workers about the lived experience of parents with an intellectual disability. They have absolutely no money.

New Horizons is a group in the eastern suburbs of melbourne and they inform the services, they’re aligned with each about their needs. They’ve just recently made and it’s available there, they run a little anti bullying campaign. They made a short anti bullying video about their experiences of bullying and some posters, one of which is there. They do a lot of networking particularly with Reinforce.

New Wave in Gippsland are a dynamic group and really great model for self advocacy. They have got partnerships all through the region with local council. They have an office in the local advocacy service who provide support. DHS provides a meeting room on weekends for them. They run training forums, they sit on interview panels for the staff of DHS in Morwell which is fantastic. Again, something i’m sure they would be happy to do for the NDIS. They’re planning to set up a Gippsland self advocacy network, they run a drop in office and they just do an amazing amount of public service. It would take me all day to talk about the work they’re doing as part of the community within the LaTrobe Valley.

That’s just a quick overview and i encourage you the groups that are here today Brain Injury Matters, Powerful Parents advocacy group and Deafblind Victorians go and grab some of their resources.

Back to Peta, what role does bim see for their group in having input into the rollout of the NDIS?

Well-lived experience is vital to the success of the NDIS, everybody I mean. Of course staff training is imperative, who better to deliver than those with the lived experience. We will provide peer-to-peer support, which is much more powerful than just bureaucratic support.

What do you want to say about the future of self advocacy?

It is unfortunately or fortunately a no brainer. There will always will be ignorance if only a small pocket and empower people with disability, will have to continue to accept their strength.

Thanks Peta that was really fantastic presentation. Now i had a whole little….

I had a whole little summing up of your presentation to give but the clock is ticking so i thought maybe we could do a little summing up at the end.

I thought maybe now is the time to go across to virtual Neil. But listen to Peta and also what Ian talked about it still reminds me of the Margaret Me quote “never doubt for the small group as thoughtful committed citizens can change the world.” Indeed, it’s the only thing that ever has and i guess that leads into the role of self advocacy within the NDIS.

I better introduce Neil, I think he introduces himself quite well but let me go to my thing. Neil Cameron is an active member, has been active in acquired brain injury scene since 1981 when he acquired his brain injury but more recently from 2008 to 2011, he was the President of Brain Injury Matters and then he was the Treasurer for 2012 to 2014. He remains a vital member of Brain Injury Matters and just recently in 2012, he founded United Brains which is a network of bi support groups.

Neil is talking about the NDIS self advocacy working group, which includes representatives from self-advocacy groups in Victoria. The group was set up to ensure self-advocates are not only informed about the rollout of the NDIS but also to have opportunity to provide advice and information to the NDIA and have input at policy level.

Let’s hear from Neil.

Now the clock has been ticking and i had a great summing up of Neil’s which i think i’d rather throw out into questions.

I guess between the individual self-advocacy and the empowerment through rights to the importance of group self-advocacy, i think Peta was talking about i thought i was alone. That people coming together and sense of identity is really important.

The other thing that’s really important particularly in the rollout of the NDIS is what Peta was saying. When you come together as groups some go this is how I did it, how did you do it, I spoke up about that and you learn information that way, peer to peer.

Also then the real importance with groups having a real say in policy making and in the way systemic change happens. I think the message that is coming from Brain Injury Matters and what neil is saying is the importance of maintaining groups of self advocacy as an potentially integral part and making it even bigger in ensuring that the NDIS works and meets the needs, the expressed needs to people with lived experience.

I will throw open for any questions – no, yes pauline?

My name is Pauline Williams and I’m a disability advocate out of AMIDA. We’ve produced information in the past about rights to people in group homes. One of the things I think is really important when you produce information such as the fact sheets, is that it gets to the people who need the information. I’m wondering has the NDIA facilitated a process where that information gets out to everybody and they have it prior to the involvement with applying for a package?

As far as I know with the ones I’ve been involved in no, they haven’t. The NDIA for whatever reasons weren’t that engaged in the whole process. To be fair to them we weren’t trying to get their permission or anything, it was more about involving people with a disability.

As far as I know, I don’t think they provide access to our fact sheets or the ones I was involved in. I think they have their own information booklet or something, don’t they, sheet or something that people sometimes find of some degree of helpfulness and some degree of unhelpfulness.

We’re just trying to work through all the work legal centres were involved with and try to mainly work with the advocacy networks to make sure people know about them.

It’s a good point there is no use having information if people don’t know it’s there.

As a follow up we’ve also found having the information if it’s just on it’s own and not presented in a way where we can have dialogue and really tease out what it means, especially when it’s a lot of complex information, people maybe just put it aside. We found the personal one to one small group training works best.

Yeah I totally agree. There is always a limit to what you can do in a fact sheet and exactly what you say, people need to be able to talk with one another and keep building on ideas and encouraging and stuff.

Hi, everybody my name is Heather Lawson. I think I would like to say it’s a little off the track but I think it’s still relevant. The people here in the audience, I can’t see who is here so please remember that we do have interpreters available if anybody would like to approach myself or Michelle. We have interpreters with us. But of course remember that I can’t see who is here so I’m unable to approach you all. Just to give us a fair ground please come up and use the interpreters.

Any other questions?

Hi, I’m Nadia and I’m a Metro Access Officer at the City of Yarra. My question is along similar line to the first question asked. Our community has a great number of people living in it whose first language is not English.

One of the big issues that we have found when trying to explain to them about the NDIS and what it will mean to them once the rollout happens in the Yarra Municipality is that there isn’t enough information available in languages other than English. We have run small groups to educate people but people still want to read information and have that information readily available to them.

I guess my question to Ian is, if you get more funding and hopefully you will, will you be considering producing them in other languages?

Yes absolutely. I should stress with this that I was kind of just involved in the early, in the writing of these and not in the management of the whole thing.

I know the three legal centres really saw that as a need and were also actually conscious of the fact that this is what happens so often. When there is not enough money often the people who miss out are people who need things in other formats whether it’s languages other than English or other accessible formats. That’s not really a fair thing and we acknowledge that. At the moment that is the reality.

They are trying to get a second round of funding to get them in about I think 12 community languages but that hasn’t happened yet.

Thank you, I will just take two more questions. I have just heard there is a change we’re going to run straight on to the next session with Deidre from Villamanta. Mary?

Mary Mallett from DANA we’re the Disability Advocacy Network of Australia, the peak body for disability advocacy. Peta thanks very much for your presentation and for hearing about Brain Injury Matters and what you’re doing and for the information about some other self-advocacy groups.

It’s a comment more than a question. Victorians should be so proud of what’s happening in Victoria around self-advocacy. It is much stronger in Victoria than it is anywhere else in the country. I know it’s not funded well but there is more effort happening here in self-advocacy then there is in the rest of the country put together. It’s amazing and fantastic and a lot of that is down to SARU being in Victoria to support that effort.

If we could replicate the energy in Victoria around self-advocacy in the rest of the country we’d be doing really well. Just everybody who is involved in self-advocacy in Victoria give yourselves a pat on the back.


Thank you mary and a great way to finish is last question from a member of a self advocacy group.

Michelle Stevens here from DeafBlind Victorians. One of the issues about self-advocacy and NDIS I have a bit of a concern as Heather just mentioned, many of us, Heather and other deaf blind we use tactile interpreters.

I’m lucky because I was born hearing and in a sense English is my first language, Auslan is my second language. Those people that I really feel are going to miss out if we’re not careful are those people that Auslan is their first language.

I think because of timelines as well that is that quite often people only have certain amount of time to meet deadlines etc., and particularly for the deaf blind community. I should mention some members of the deaf community and those people who are with ABI, acquired brain injury community; I’m concerned that some people may miss out.

How can we sort of make sure that everyone can get a fair go and where the support is necessary particular one on one? It’s important for the deaf blind community. How can we make sure that information is shared so that we all can understand what’s happening?

I might throw to Ian on that, it’s an information question, has that issue facing people Deafblind been addressed?

It’s a great question and I wish I had a great answer for it. It’s terribly important.

All I can say, well two things, in relation to the deaf blind community I’ll make sure that I pass on to Fitzroy Legal Service who have been coordinating this project, the points you’ve just raised. I think it’s vital they get that information.

The second thing I will say is the importance and I know you get so sick of this but continuing to demand and ask for information to be made available for you. It’s so easy for people to think if you’re not demanding the information that you don’t need it and forget that the reason that’s happening is because it’s not being made accessible in the first place. It’s kind of a bit of a cycle.

That’s the things I would say which are not overly helpful but that’s all I can say.

All right thanks Ian, thanks Peta and virtual thanks for Neil. I better move on because i see the next presenters are here.

Thank you everyone.


About Sue Smith

photo of Sue Smith Sue works at SARU and enjoys sharing advice and ideas gained from her thirty years’ experience in self advocacy and community development. She is currently the chairperson of Community Art and has helped manage community arts projects in partnership with community organisations including Compassionate Friends, Self Help Addiction Resource Centre, Warrior Women and Reinforce. She also has a background in the production of videos and training packages for community organisations.


About Ian Parsons

photo of Ian ParsonsIan Parsons currently works as a Research Fellow in the Centre for Rural Regional Law and Justice in Deakin University’s School of Law. His background is in community development, research, policy and law reform in both public and community sectors, with a major focus on human rights issues for people with disabilities. From 2002–2006 he worked as a Ministerial Adviser to the Hon Sherryl Garbutt, Minister for Community Services and Minister for Children in the Bracks Victorian State Government. He has also worked in a research and policy capacity at the Victorian Law Reform Commission, primarily on the review of Victoria’s guardianship legislation from 2009–2012. He has written several books on disability rights issues, all published by Villamanta Publishing Service.


About Peta Ferguson

photo of Peta Ferguson Peta Ferguson was studying Arts/Law at Melbourne University in 1974 – 1975. She then dropped out and hitch-hiked to the Northern Territory where she worked for a few months as a governess and meatworker on a cattle station. After some further travel she returned to Melbourne and took a deliberate overdose of prescription medication.
The effects were substantial; she didn’t talk for three years or walk for four years. After leaving the institution where she ‘lived’ for five years, she married, brought up three stepchildren 24/7, including one child with Aspergers, had a biological child and divorced ten years later. She then, in 2007, discovered the existence of Brain Injury Matters (BIM), a self-advocacy group for people with acquired brain injury. She joined and has been president for the last few years.


About Neil Cameron

photo of Neil Cameron Neil has been active in the Acquired Brain Injury (ABI) ‘scene’ since 1981 when he acquired his brain injury, more so recently. From 2008–2011 he was president of Brain Injury Matters, then he was the treasurer from 2012–2014. He remains a vital member of BIM. Just recently, in 2012, he founded ‘United Brains’, which is a network of ABI advocacy and support groups statewide, a much-needed organisation which will benefit from a large injection of funds from the NDIA.

Related Posts