Future forecasting for the NDIS

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

Sharon Granek, Women With Disabilities Victoria, looks at what future issues may arise as the rollout of the NDIS continues. What issues do people with mental illness face getting support under the NDIS, and what is the future role of advocacy as the sector continues to change?

Contributing to the discussion is:

  • Nathan Grixti, Consumer Advocate, Victorian Mental Illness Awareness Council (VMIAC)
  • Mary Mallett, CEO, Disability Advocacy Network Australia


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Hi, I’m Sharon, i’ll be moderating the session. Thanks for coming. We’re going to divide this session up into two parts and it’s looking at what issues might arise in the future with the rollout of NDIS and looking at disability advocacy.

We have two speakers, Nathan Grixtie is going to be our first speaker. I’ll tell you a little bit about Nathan. He currently works as an advocate with the peak consumer organisation in Victoria, the Victorian Mental Illness Awareness Council known as VMIAC. Nathan identifies as a consumer, a voice here and as a site survivor holding strong conviction in the power of consumer communities in effecting positive change not just in the mental health system but in the way we understand and continue to reframe the way we think about mental health and illness. Nathan has a background in both peer support work and PHANS roles. What’s that for?

Personal health and mental, it’s an acronym.

I hate acronyms! And has been speaking publically about his lived experience of receiving a diagnosis of mental illness for a number of years. He has worked extensively with other consumers in the Barwon region during the implementation and trial of the NDIS. An experience, which has directly influenced his decision to move into a consumer focused advisory role. Okay so i will hand ball it to you.

People are probably getting sick of hearing me speak today already.

Mary and I we’re going to talk about the future focus for NDIS and what that’s going to mean for advocacy in particular. I have already spoken a bit and shown that video this morning around some of the unique issues that are facing mental health with the implementation of this scheme. I will try and be really quick when I talk about the impacts here and try and focus in a way of what this means for advocacy and in particular consumer focused advocacy in mental health and ways that might extrapolate out into other areas of disability as well.

Just a bit of an overview of what I will be talking about. I briefly touched on who we are with VMIAC, talk about that notion of permanent impairment and eligibility criteria and what that means when working in a recovery space within mental health, have a little chat about consumer communities and alternative frameworks for our experiences which don’t necessarily sit within the NDIS paradigm.

As I mentioned before we’ve done a fair bit of extensive consultation with consumers in Geelong and we will have a bit of a chat about what consumers are actually saying about their experience with the NDIS, and then try and put that in the perspective of what that means for advocacy.

Just a bit of background on VMIAC. As stated before VMIAC is the peak consumer organisation within Victoria. We work around advocacy, information provision and research. When I say consumer organisation it means that everyone who works within VMIAC we all identify as consumers, we all identify as people with a diagnosis of mental illness or experiences of emotional distress.

The advocacy we do is on three levels. We do individual advocacy, group advocacy and systemic advocacy. Just a bit of who we are – the kind of underlining themes of what we do is a philosophy of equity, social justice and change to benefit consumers. It’s the kind of change that’s led by consumers rather than by the system.

This has kind of been the issue we’ve been facing in mental health. This is a cartoon by one of the consumer leaders in this country who works out of Melbourne, Merinda Epstein. A bit of tongue and cheek here. This is one of the issues people in Geelong are facing at the moment.

In order to access community support people are finding it’s a real challenge to present as sick as they possibly can in order to maximise the kind of support. Especially when we are working in recovery and focusing on strengths, we’ve suddenly found ourselves with everybody trying to focus on their deficits.
Spoke earlier and in the video where we talked about that notion of permanent impairment and what that means within the context of mental health. It’s a tricky discussion we’ve been having. On the one hand we know the impact this kind of language has but on the other hand we don’t want to be getting into a space where inadvertently further marginalising other people with disabilities by saying we’re not disabled.

One of the issues that we’ve found, with that idea of permanent impairment it is with the NDIS and the rollout and it’s eligibility criteria the vast, vast majority of people consumers as a whole really do feel that this kind of language it’s a huge step backwards from where we’ve come from.

The consumer movement has actually been working very hard for decades to move away from this idea of permanents and disability and sickness and actually start focusing on recovery and wellness. The work that’s been done has meant the clinical system has started to move out of those paradigms and shift more towards a recovery focus and now we have a community sector which is suddenly back in this space and using this technology again.

The key issues in the way we work – that idea of permanent impairment doesn’t reflect best practice. We work in recovery, to shift this kind of thinking is a huge task. It actually contradicts the evidence of recovery-based practice as well. I won’t go into details here because there is a wealth of information on this but if people are interested there is plenty of different sources out there. You can check the VMIAC website or just a Google search will show you.

As we saw in the video for a lot of people that label of permanence, disability, impairments actually creates a barrier to access, to supports. If people are looking at a paradigm that says they’re disabled, that have some kind of impairment people won’t access supports in that area.

One of the things we have been discussing is the NDIS quite often talks about the three pillars that it’s built on. The middle pillar being choice and control. In essence, this kind of language doesn’t reflect the choice of control that they’re saying from the consumer perspective.

There has been a lot of work done, it says it right here. We’ve got the national framework for recovery on oriented mental health services. This is actually developed by the Australian Health Ministers, advisory council and published last year. The first domain of this particular framework is promoting a culture and language of hope and optimism is the overarching domain, is integral to all the other domains in mental health. It says it right there. The language we use needs to be a language of hope and optimism.

If people are saying that idea of permanent impairment is counter to that this is a real issue. When we talk about consumer led frameworks and the different kind of communities that are out there, a lot of the stuff that’s been happening for quite some time now, we’re talking a period of 30 or 40 years, is people being able to develop their own frameworks for their experience.

Intentional peer support is a good example of that and I understand peer support happens in a range of different areas as well. The hearing voices approach is a good example. I mentioned in the other forum that we have diagnosis of things like schizophrenia and psychosis and there is quite a large number of people now doing a lot of work in reframing these experiences and challenging these old ideas of what schizophrenia actually means.

Quite often the diagnostic criteria that goes into these labels has been challenged by the consumers who have had these labels placed on them. A bit of tongue and cheek stuff here. This is actually part of a consumer organisation that’s invited submissions from right across the country for people to develop their own definitions about the kind of language we use. The NDIS wasn’t immune. From the consumer perspective again it’s a bit tongue and cheek and some of the things people were saying is that it’s another kind of system which potentially marginalises more, it restricts us from getting access to support rather than encouraging us.

I won’t go through all of these but there is a few things here. Essentially, we’ve found five issues coming out of the things that people have been raising in Geelong. We’ve discussed at length the problems with languages that essentially it’s different to what we fought for in mental health for all these years.

Labels such as permanence, impairment, disability they often have a lot of demeaning attachments to them. For many people that actually feel the responsibility is placed on the consumer themselves, it’s their fault they become sick, it’s our fault we became unwell, that the system is actually going to fix that for us. I suppose that when we talk about that term consumer, again this is the kind of language that’s been developed by the communities that have had these experiences.

The term consumer is something that kind of came into existence quite a few decades ago now. Originally, that word was built around reflecting the kind of choice and control we want to see out of services. There is a lot of debate over that particular term now. There is plenty of people that still use the term consumer, people don’t necessarily know what it means, other people feel the word has passed its use by date. There is connotations with consumer culture, we’re looking for support not purchasing a pair of jeans. When we use the term consumer, it’s really just about a way to encompass who we are as a community. It’s a word that we sometimes accept, sometimes have issues with. At the moment it’s the best word we’ve got and I suppose that’s where we’re coming from. When we use that word consumer, it goes with all the historical context that comes with it. There is a lot of information out there about this, which again if people are interested please look into it.

A big issue that we’ve heard from a lot of people in Geelong is that the systems and processes that are in place are very difficult to navigate. I think that’s become very evident in all areas of disability or most, I won’t say all. Essentially, within mental health a lot of the supports actually don’t fall in line with the episodic nature or times of crisis for a lot of people facing mental health issues.

A lot of feedback we had was that people actually felt like their supports were locked in until the next review, there wasn’t enough flexibility for people to change their minds, or to come and go or to intensify or draw back and they chose.

Quite a few people have reported accessibility has been a real issue. Again, I’m hearing that from a lot of the sectors that there has been long delays. We have heard paperwork has gotten lost. I think in the video a number of people actually felt left out because the NDIA hadn’t actually gotten back to people.

The good news is that when it comes to reviewing decisions that we’re finding more and more that a lot of people within the mental health sector are having their reviews approved. The requests that have been denied once they’ve done the EPL that’s been approved. What a lot of people have reported though is that it’s very difficult to do this without having an advocate or a support worker attend with people.

When we’re trying to talk about independence and autonomy and being able to access services on their own it’s not an ideal situation to be having to access advocates with every single contact we have. Again I think we’ve heard this from a lot of areas, a lot of people have felt disempowered and coheres into making decisions. The unintended harm of this label is actually something, which there is a lot of work being done around this and what this can actually mean.

We’ve mentioned that these kind of processes are actually reinforcing outdated ways of thinking. We’re going back to a clinical model, which was legitimising the kind of sickness ideas that we had. Many people have actually reported that the support work that they’re doing with the services that they’re accessing has been interrupted during this phase in time and that’s kind of dragged on for a few months.

A lot of people are finding they’re not actually reporting any kind of issues they’re facing with their support workers out of fear, adding to worker stress.

Very serious kind of issue we’re facing is we’ve heard quite a number of anecdotal reports that a lot of people have found their mental health issues have been impacted by this particular trial. A number of people have been hospitalised and we’re aware from a few reports that a number of people have actually made suicide attempts in response to rejection from the NDIA.

There is actually quite a serious issue that if we’ve got a system which means there is a risk to people’s lives, there is something that really needs to be addressed and it’s a key part of the advocacy work we’re doing at the moment.

We’ve also noticed quite a bit of lateral violence happening amongst consumer communities. When we’re talking about these kind of views we’ve got such a broad kind of spectrum of ideas around what mental health and mental illness means and a lot of consumers actually saying that this idea of permanent impairment is inappropriate.

There is also a lot of consumers who feel that NDIS offers a great amount of hope. The people who actually are wanting the NDIS are worried that those of us who are trying to challenge these kind of ideas are going to ruin it for everybody.

There is a systemic impact, the system actually creating this kind of rift amongst communities. The ethical questions I think we’ve all heard enough of these. I will skim over these.

What it means for the role of advocacy moving forward though means that I think a lot of the contact we’ve had with the NDIS, there has been a lot of talk about we’ve got to be mindful that we don’t create adversarial relationships. In reality though the kind of advocacy role that we do as consumers is really about representing consumer voice.  Part of the consumer movement, there is quite a strong and political context going on here as well which doesn’t often get discussed in these places.

A lot of that movement has involved challenging the dominant paradigms. It’s involved challenging the labels, challenging the stigma and challenging the discrimination. We know historically psychiatric labels haven’t always been an objective way of describing health issues for somebody but have been used to oppress quite a large group of individuals. I think it was only as recent as 1973 that homosexuality was knocked off as a mental illness. Its only last year that the American psychiatric association has removed bizarre delusions as a sign that someone has schizophrenia or an episode of psychosis going on.

We know the mental health diagnosis change, we know their context change, we know as people get together and reframe their experiences there is a potential for something that’s considered to be a disability to be turned into something else.  Essentially, it basically means that mental illness is a social construct, it’s actually something that’s imposed on people. As far as the adversarial relationship I guess, part of our advocacy is advocating for our right to be adversarial when we need to be.

If there really is something that a large portion of the community feels strongly enough about we actually need to be able to challenge what’s going on. We need to be able to say no, we need to be able to point out why, what’s happening needs to be changed.

I’m aware we haven’t got a lot of time so rather than me waffling on I’m keen if anyone has any questions please feel free to ask and we will go from there.

We’re going to ask questions at the end if that’s OK.

No worries, I will just hand over to Mary.

Download: Future forcasting for the NDIS slideshow

I will give you a little background of mary. She is the CEO of Disability Advocacy Network Australia, that’s the national peak body for independent disability advocacy. DANA as it’s called is based in Canberra and Mary has been in this role since March of this year having moved there from Tasmania where for the previous 8 years she managed an advocacy and self-advocacy organisation Speak Out Association of Tasmania. Mary has been a board member of DANA previously for 2 years and a board member of the National Council on Intellectual Disability as well as being a committee member of ACID in Tasmania for many years. She believes that independent disability advocacy is a vital and under resourced area of disability funding and is determined to ensure DANA as a national peak body for advocacy supports the organisations doing this valuable work. Great to hear, over to you mary.

Thanks, you know when you write these things and send them off by email you forget you have to listen to it.

Can I ask who in the room, I know some of you definitely but who in the room is involved with an advocacy organisation? Yep and a few that aren’t, okay. Sorry put your hands up again because it was more than half the people in the room, maybe there is 10 or so that are involved.

I’m just going to follow in immediately with the point Nathan finished off on before I go on to a couple of other things, which was about the consumer voice. The role of movements, movements of people, rights, movements in anyway, the consumer voice in anyway.

I’ve only been in the national role a very short time, since beginning of April and what is absolutely clear to me is the current Federal Government and the bureaucracy don’t give a damn, this study is meaningless to them.

They are changing the language in any of the Federal grants, grant processes now that come out they are shifting a way to and I haven’t studied sociology, I don’t know what the terms are, I’m sure some of you probably do, and I haven’t got time to study it at the minute. But they’re shifting to this very black and white, everything is in boxes, everything is more a business model, it’s not in the peaks funding’s which I’ll come to in a second.

They don’t use the word peak body anymore. They don’t use DPO, Disability Peoples Organisation. They don’t use that language. They don’t care whether a body that they fund is a for profit organisation, a not for profit organisation. They don’t care if it has links to consumers, they say a little bit about it but it’s window dressing. It’s tokenism. They don’t mean any of it and it’s going to make it really difficult to make any gains at all with any of this stuff.

And for us, for all of us to continue to do the work we do we have to get funding, we have to get Government funding. No one sprinkles money at advocacy. You have to get Government money to do it, which means you have to fit into the boxes they put out.

On the one hand, we might want to argue against it and on the other hand, we have to shift and turn our organisations into something that can get the money. It’s a huge dilemma.

DANA is a two-person operation. We sit in Canberra and we are only funded till the end of February. The National Peak Disability Organisations, there are 13 of them currently funded, down as being funded for about 4 years. David Craig is in the room and he was one of the founders of DANA, one of the fathers perhaps. It was about 4 years ago DANA first got funding as part of that scheme, some of the other peaks have been funded a bit longer.

The Government, the Department really I think, they took the opportunity of a new Government coming in and they have turned 13-funded peak bodies from 13 currently funded, there are only seven spaces. Of those four are sort of protected – women with disability, children with disability, Aboriginal people with disability and people from cold backgrounds. Those four are sort of protected spots. There is one for the service providers. So there is two spaces for all the other peaks to fight over.

We’ve been waiting since May really for the results of that and it will be announced by end of December, probably 31st of December I’m guessing. That was a 2-month extension so we have funding till the end of February. We will be scrambling and grovelling and fighting with everyone else if we don’t get funded to try and get some money to keep doing what we’re doing.

The total amount of money available for the peaks was cut down anyway but in total over 4 years, which is how they allocated it, is a total of $6.8 million, which is not an awful lot if you look at it per year. There was $68 million applied for so there’s a lot of that again more losers than winners because other organisations who weren’t…as well as the existing 13 funded peaks any other organisation that either was a national or a state body actually, was able to apply.

Anyway we’re awaiting the outcome of that shortly. Leaving the peaks stuff off to one side there is a huge issue. I find it very hard to think of anything positive I can say about the future of advocacy, which is awful and considering we’ve had some great presentations from people who are doing really good work.

Yes, the NDIS is doing great stuff and has fantastic potential to change people’s lives, but the advocacy part of the sector feels to me at the moment to be the most vulnerable. The least well-funded. We have very few friends in positions of influence. It appears to me and I’m being completely honest because I may not be around much longer, it doesn’t matter,

if you know what I mean. It seems like the people in the senior levels of the bureaucracy certainly at Federal level, slightly different to State and Territory level, certainly within Federal level and within the people who have designed and are still designing and developing the NDIA, they accept that advocacy should be there to some extent. They know that its written into the principles of NDIA, they understand that but nobody wants to fund it.
There is a big dilemma at the minute, there is a federally funded program, they’ve been talking about putting it out to tender at the end of June next year. Probably what we’re hearing now it’s more likely it would get extended at least for some period of time while they work out what happens with it longer term. But the State and Territory Governments actually provide more funding between them for advocacy than the Federal Government does except in South Australia.

The South Australian Government doesn’t provide any funding because they withdrew it. I don’t know if anybody remembers but 6 to 8 years ago, maybe 10 years ago now the South Australian Government stopped funding advocacy, just completely withdrew the funding.

I have met in the last few months twice with Minister Mitch Fifield’s advisor and both times she said a thing that really worried me. She brought up the fact that in South Australia, she said just conversationally, in South Australia they don’t have any state funding for advocacy do they and I said well no they don’t but that’s not a good precedent.

This is in their minds and it clearly seems to me that she is thinking which perhaps means the Minister is thinking that if South Australia can manage without state funding of advocacy well why can’t everybody else.

The problem is, it was mentioned earlier in relation to the community mental health services. Nathan you probably mentioned it earlier, that money is part of the bilateral agreements. The money that’s currently used for information and advocacy at State level in every State is part of the bilateral agreements. It’s signed back to the Commonwealth and will come back into the NDIA but not quarantined for advocacy, it’s just coming in to run the NDIA and provide participant plans.

That is somehow going to be decided by a COAG decision but those COAG decisions are made behind closed doors, there is nothing consultative about how they make those decisions.

We’re trying to have some influence on it but anyway, I feel like we’re struggling to get it we think, because we’re sending in information and we don’t know if we’re being heard or not.

The other thing about advocacy funding is that it hasn’t shifted actually for years. Anybody who is here in the room managing an advocacy service knows they’re managing in theory the same amount but really more or less the same amount of money they have had for 10 years. It doesn’t buy the same amount, the same amount of hours or the same amount of kilometres for your car or anything else as it did 10 years ago. They’ve just never increased the funding.
WA is a bit of an exception, they’re relatively generous with advocacy organisations because the state has more money. Everywhere else all the organisations are trapped in the position, most of them, of being very small, underfunded and under resourced and scrambling to do the amount of work they have to do.

(inaudible – question being asked in background)

Yes that’s right the indexation or whatever they called it applied to advocacy. It’s not just advocacy that’s targeted.

The current Federal Government has targeted a lot of programs. Even a tiny amount of money like the indexation still makes a difference if you haven’t got much money. I think it’s amazing to me that advocates and advocacy organisations can keep doing what they’re doing.

Often it is complex, can be very difficult work and they’re pushing against systems that are like a brick wall. The thing that keeps people going is because they have people they’re working with who are very vulnerable and are entirely dependent on that advocate doing a good job for them.

All of you will have stories in your mind about people you know in terrible circumstances where the advocate has managed to get them out of that or improve their life in some way. So what is particularly frustrating is it’s very hard to get that message across to the people who make the decisions.

DANA tried and succeeded at the very beginning to get a little bit of funding and get started and to have that now pulled away where there is so much potential out there. What I can see is that there’s an awful lot of advocacy effort happening in little pockets all around the country.

The organisations mostly do individual advocacy, there’s very few organisations funded to do systemic advocacy or not funded properly to do it. Through the Federal program, there is only one systemic advocacy organisation, which is in Queensland, QAI, and they’re funded entirely for systemic advocacy but they’re the only ones funded for that.

DSS who were FaHCSIA, who fund that program they put out some papers. Some of you might have responded to them. There was a paper about collaboration and systemic advocacy. There was feedback stuff about it. They have never released them because things have moved on and now they’re meaningless. That’s exactly what happens. We waste time responding to things they’re not going to do anything about.

If for instance DANA or somebody was able to be funded to coordinate nationally properly the systemic advocacy effort that every organisation is interested in, so there might be 10 or 20 organisations around the country all working on the same issue and have similar client things happening, child protection as an example at the same time, there would be absolutely some better opportunity to get some better outcomes if we were able to coordinate that effort. Pull it together and share the stories, do more concerted work. The opportunity is there but at the moment and the near future there is no sign of any money to do it.

There are opportunities coming up and the quality and safe guarding stuff that’s going to happen through the NDIA, which is a big opportunity. The Federal Government has to do through DSS a whole lot of consultation starting maybe February next year all around the country around quality and safeguarding.

Everybody who has ever been involved in advocacy has to get to those consultations and talk about why advocacy is important in safeguarding. They know it is but they have to understand that it won’t happen unless it’s funded.

That’s the thing that we will be pushing hard both to get information into them at the national level but to make sure that at every consultation around the country there are people there talking about advocacy and how important it is.

I’m being given the wind up I’ll just mention one other thing. In a tiny attempt to do something about this we’ve launched a little campaign called 12 Days of Advocacy, a rip off of the Christmas thing. It will run today, tomorrow and the next two weeks. We will release a thing every day and it will use the number as a focus.

It’s to add value to the National Disability Abuse Enquiry Campaign. We will have links to that website but it’s particularly about talking about advocacy and how important it is to safe guard people against abuse. We will be tweeting and Facebooking and emailing it out. We would ask that everybody would share it and send it on to as many people as you can. Let’s try and build a little bit of momentum.

Please keep your fingers crossed for DANA and if we’re sending out urgent pleas for help at least think of us.

Thank you for that and thank you Nathan. Now this is your opportunity to ask questions. I’ll come around with the roving mic, say who you are and where you’re from.

Thank you. I’m Wendy Lynch I’m a rural access worker in the Wimmera Region. Someone would’ve heard me before. I don’t know if everyone knows what rural access is and deaf access or if there is any other workers here who belong to that network.

No….you, yes of course. What we do, most of us work under Local Government, we work on systemic issues. We work with Local Government, hospitals, organisations all of the various groups in the regions. We work with people with disability to try and change everything really.

It concerns me that we’re looking at the NDIS when on the ground we’re still arguing over why a toilet needs to be accessible. This is a reality that we’re facing on the ground. Funding will go out, people might get funded but if they can’t actually get into infrastructure, if they can’t get into training, if they can’t get into employment because of attitude and various other things where do we stand?

Advocacy is a crucial thing in that and there seems to be an assumption under the NDIS that people have family and a lot of people are on their own. Where do they go out without advocates, it’s a huge issue. In addition, before we were listening to you when you were talking about mental health issues and money for support being consumed into the NDIS. We currently have some funding for mental health in our region, but I’m assuming you’re saying that when it hits regions that some of that funding will be consumed?

Yeah it comes down to the bilateral agreement I mentioned and Mary mentioned before. I suppose in mental health we’ve got two different sides to things. We’ve got the clinical sector and the community sector. The advocacy work we do is across both those sectors.

The clinical stuff we have mental health legislation, which we do a lot of work around anyway. The mental health sector, the community space anyway is being funded from a number of different sources traditionally. We’ve had State funding, Federal funding, all these different kinds of programs. The current bilateral agreement as it stands will remain throughout the trial is that all the community managed mental health funding’s, that includes State funded, DHS funded, Federally funded, everything we’ve got has been shifted into the NDIS.

Most of the community management or health supports we work with they work in a recovery space. Many of them don’t rely on evidence of diagnosis, many are moving away from diagnostic stuff as being an issue as we’ve discussed. We work in recovery, work on strengths, work on goals, all that kind of stuff that goes on.

What we’re kind of facing at the moment, I know this has been mentioned in the Tier 2 supports, in reality we don’t know what it’s going to look like. We’re quite a few months into this now with mental health and we still don’t know. What the reality is here, if the current circumstances remain, when this trial rolls out nationally, it may not happen in every other state but in Victoria, if that bilateral agreement remains and we don’t get the Tier 2 stuff sorted, anyone that is deemed eligible for the NDIS there is nowhere, no other supports available in the community anymore. Its clinical or nothing.

We know in that clinical space a lot of people have faced issues of trauma because of clinical interventions. A lot of people find even identifying with the clinical system is something people don’t want to do because it reinforces the trauma people have had to deal with. It’s a real mind field of issues we’re facing. It sounds like in other areas of disability these kinds of things are happening as well in terms of the bilateral agreements that are in place.

Mary might know more about that.

Mary, have you got anything to add?

Only just that Wendy’s point sort of adds to that thing about the quantum of advocacy that’s done around the country. There are organisations that are funded to do advocacy. Then there are lots of other places and people who are also doing some advocacy and that’s the gap that I can see that it would be possible to draw that stuff together if somebody had the time and effort.

I can see that it could be done really well at both a State and National level. It’s just hard to get any traction on it at the minute until there is some solid certainty of funding to be able to do the work. But if we can get that then it’s a fantastic thing. I’m going to get your contact Wendy so I can follow it.

One more question?

I’m Jarrod and I’m representing the wider community, but this is my question. Service providers were and still are a little bit scared of….I mean service providers like day services and group situations, are scared of people going into, managing our own fund and doing what they want to do in the mainstream community.

My question is more of a philosophical one. Would you think that if advocacy does and is approved in somebodies package or plan, would it be better if we had organisations providing advocacy or we could privatise advocacy services on an individual level?

Jarrod you were asking about people getting advocacy in their plans.

Yes, do you think, I know every advocacy case is different but do you think it’s a good idea to privatise advocacy where somebody can go I will pay you $50…

It’s a good question and I’ll tell you what I know so far.

The NDIS have said they will not fund advocacy and that’s because in the same way that they don’t want to have doubling up of anything, they don’t want to duplicate the health service or anything else. They say advocacy is funded by Federal Government, State Government. It’s not to do with the NDIS, they won’t fund advocacy under the NDIS.

What they will fund or are thinking of how to do it, the previous speaker from the Office of the Public Advocate talked about the supported decision-making, so it looks like they will fund in some way…I don’t know any of the details about this. What they seem to be thinking of is that they will fund people who need support to make decisions, they will be able to buy that.

What we don’t know is who will they be able to buy it from. Exactly like you said, will it be privatised? Will there be private individuals who set them up as a person who will support people to make decisions, and will they have to prove their independent from other services? Or will other ordinary disability service providers be able to say and offer, we do supported decision making or will they have to be something like an advocacy organisation, but will they even allow advocacy organisations to do it.

If they do it, they have to register as a service provider with the NDIS. It’s a very complicated thing that isn’t sorted out yet and they’re not talking to the right people to get the answers, to do the thinking about what they should do but we know they are thinking about it.

There will be something, something will happen but it definitely won’t be issues advocacy that will be funded under the NDIS. It will be very restricted to particular things which is about supporting people to make decisions about what service do they choose.

We don’t know about people who need support to make decisions about their plan in the first place, that stuff is currently being done by advocates but it’s not being paid for, it’s just something they’re doing as part of their current workload.

It’s an interesting question and I don’t know the answer. I don’t think she is in the room, but there is a lady here I have met at a couple of conferences now who would call herself a private advocate. She contracts herself to one individual at the moment and there are a couple of people around the country starting to just do this stuff.

It may be going to be a growth area, I don’t know.

Okay sorry to cut you off but we’re definitely getting the wind up, anything to add quickly Nathan?

Just a quick one around that question about advocacy, that it’s potentially funded by the NDIS.

I know they’ve said they won’t fund it but I guess the risk in terms of advocacy is do we compromise our own integrity. Do we compromise the ability we’ve got to do systemic advocacy and challenge issues that are within the system that we do feel need to be addressed?

I’ll give you a quick example and then wrap it up. Some of the work I’ve been doing the last 6 months or so, The Hearing Voices Group here in Geelong have learnt during the implementation of this, of a core group of 8 or 9 members only 3 were deemed as being eligible which meant the group was at risk, it was being greatly compromised. That particular group as a group of consumers made the decision to break away from services and become independent out in the community.

I guess that’s a key part of what the advocacy work can be about which is working against the system sometimes. Again, that’s where that adversarial stuff we really need to work that out.

There is a lot of work ahead of us. Give the speakers a round of applause.

Thank you.


About Sharon Granek

photo of Sharon GranekSharon Granek is the Program Manager at Women with Disabilities Victoria (WDV). She has worked for many years in community development in various capacities but always in the field of diversity, including case management, residential and respite care, policy development, housing, education, training and employment, public health and advocacy.
She has a Masters in Human Services and Public Policy and has completed two research reports: The Accommodation Needs for People with Huntington’s Disease, and Housing for Life – Planning for Accessible and Adaptable Homes in Victoria. Sharon helped to establish and was the first coordinator of the Disability Advocacy Resource Unit (DARU). More recently, she was a member of the Project Management Team at WDV that oversaw the Voices Against Violence Research Project – a cross sector partnership with the Office of Public Advocate and the Domestic Violence Resource Centre Victoria that investigated what happens to women with disabilities who have experienced violence in Victoria. Sharon is also a parent of two adult children and is a woman with a disability.


About Nathan Grixti

photo of Nathan GrixtieNathan Grixti currently works as an advocate with the peak consumer organization in Victoria, the Victorian Mental Illness Awareness Council (VMIAC). Nathan identifies as a consumer, as a voice hearer and as a psych survivor, holding strong conviction in the power of consumer communities in affecting positive change, not just in the mental health system, but in the way we understand and continue to reframe the way we think about mental health and illness. Nathan has a background in both Peer Support Work and PHaMs roles, and has been speaking publically about his lived experience of receiving a diagnosis of mental illness for a number of years. He has worked extensively with other consumers in the Barwon region during the implementation and trial of the NDIS, an experience which has directly influenced his decision to move into a consumer-focused advocacy role.


About Mary Mallett

Photo of Mary MallettMary Mallett is the CEO of Disability Advocacy Network Australia (DANA), the national peak body for independent disability advocacy. DANA is based in Canberra and Mary has been in this role since March 2014, having moved there from Tasmania where for the previous eight years she managed an advocacy and self-advocacy organisation, Speak Out Association of Tasmania. Mary had been a board member of DANA previously for two years and a board member of National Council on Intellectual Disability, as well as being a committee member of ASID in Tasmania for many years.
She believes that independent disability advocacy is a vital and under-resourced area of disability funding, and is determined to ensure that DANA as the national peak body for advocacy supports the organisations doing this valuable work.

Barwon Disability Advocacy Network (BDAN)
NDIS and Advocacy conference
Thursday 4th December, 2014

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