Strengthening Disability Advocacy Conference 2017
Getting into gear for the NDIS journey

Friday 15 September @ NAB The Hall

GPS needed for the road ahead 

When

Friday 15th September, 2017: 2:30pm - 3:30pm

Where

The Hall

Speakers

Facilitated by:

Colleen Furlanetto, Chair of Victorian Disability Advisory Council

The sector lobbied hard to retain independent advocacy by remaining outside the NDIS. Anecdotally, it’s acknowledged that participants achieve better outcomes through their interaction with the Agency by seeking advocacy assistance- but what will advocacy look like in the new NDIS landscape? This panel will identify the pot holes and road blocks ahead where advocacy might be called upon to hold the system to account. Might advocacy prove to be the most effective GPS for the NDIS?

Photo of Colleen Furlanetto, Chair of Victorian Disability Advisory Council

Panelists include:

Peter De Natris, Strategic Advisor, National Disability Insurance Agency

In Peter’s current role he is focusing on key areas of Scheme Design and Approach which recognise the shift from the current program based systems to an Insurance scheme based on markets that need to be developed and supported so that best practice can be enabled and continuous improvement encouraged.  Driven by a passion to see the Australian commitment to rights of people with a disability and the rights of children realised, he recognises the possibilities of the NDIS as the game changer.

Photo of Peter De Natris, Strategic Advisor, National Disability Insurance Agency

Mary Mallet, CEO at Disability Advocacy Network Australia (DANA)

Mary heads upDisability Advocacy Network Australia (DANA) based inCanberra, the national peak body for independent disability advocacy in Australia. DANA supports organisations in every state and territory that work to promote and advocate for the rights of people with disability. With the advent of the NDIS independent advocacy will be even more important in assisting … Continued

Photo of Mary Mallet, CEO at Disability Advocacy Network Australia (DANA)

Miranda Bruyniks, Deputy Commissioner, Disability Services Commissioner (DSC)

As Deputy Commissioner at Disability Services Commissioner, Miranda takes a leading role in promoting the rights of people with disability, oversight of critical incidents reported by disability service providers and the resolution of complaints about Victorian disability services. She is committed to improving the lives of those who use disability services, and in particular, ensuring that people with a disability are heard and protected from abuse and neglect.

Photo of Miranda Bruyniks, Deputy Commissioner, Disability Services Commissioner (DSC)

Session Summary

The sector lobbied hard to retain independent advocacy by remaining outside the NDIS.  Anecdotally, it’s acknowledged that participants achieve better outcomes through their interaction with the Agency by seeking advocacy assistance- but what will advocacy look like in the new NDIS landscape?  This panel  identified the pot holes and road blocks ahead where advocacy might be called upon to hold the system to account. Might advocacy prove to be the most effective GPS for the NDIS?

Session ideo coming soon.

 

Transcript

MELISSA HALE:
Welcome back, everyone.  So this next panel   there’s something really amazing about this panel.  Do you know what that is?  It’s the original line up.  No one is sick.  That deserves a round of applause.

So we are now going to turn our attention to the future and need a GPS for the road ahead.  The sector lobbied hard to retain independent advocacy by remaining outside of the NDIS.  We know that participants achieve better outcomes through their interactions with the NDIA by seeking advocacy assistance, but what will advocacy look like in the new NDIS landscape?  This panel will identify the potholes and road blocks ahead where advocacy might be called upon to hold the system to account.  Might advocacy prove to be the most effective GPS for the NDIS?  Let’s see what our participants and advocates think.

(Video: GPS needed intro)

MELISSA HALE:
So this next person needs no introduction, so I would like to extend a warm welcome to the Chair of the Victorian Disability Advisory Council, Colleen Furlanetto.  (Applause).

COLLEEN FURLANETTO:
Hello, everybody.  A few big breaths in and out, and in again.  And out.  And bless you for staying and not going home because we’re the last session.  This is the best until last, so just see if we live up to it.  Congratulations to everybody for being here, thank you and thank you to everybody who’s put so much effort into today.  I’d like to take particularly Bevan and Amy for their help.  Thank you.

These three people standing over here you would have seen their bios, it’s in the booklet and you’ll know them probably anyway.  So what I would like to do is I want them to get into a little bit of character.  So I’ve just got some props that might help.  We’re talking about navigating and roads and things, so firstly I’d like Peter De Natris to come up and, Peter, you are strategic adviser for the National Disability Insurance Agency and for this to be a journey, we take the conversation to the road, I offer you a sports car because the NDIA is waiting   see what I’ve done there?  Thank you.  Excellent.

Next I call on Miranda Bruyniks, Deputy Disability Services Commissioner, and for this journey I offer Miranda the coupe as we hit the road for today’s conversation as it has an option to have the roof down, which makes the Commission visible and available.

Last but certainly not least please welcome to the stage Mary Mallett.  Mary is the Chief Executive Officer of Disability Advocacy network, DANA.  You are driving a flash electric like all disability advocacy organisations needs to be economical, practical and run on sensitive renewable power.  So take on your cars.  Yes, very good.

So this is going to be a hard session, there’s a lot we want to get through.  We’re running a little behind time.  We want to have a valuable opportunity for you to have questions at the end.  We’re doing the session a little bit differently this way.  So hopefully it will work and I get another gig one day.

So I’m going to ask you a few questions, as I’ve said, and I will go straight into it.  I’m going to put a scenario to these wonderful people, these wonderful cars, but actually we need to set the cars aside for a moment and imagine yourself with 50 odd years into the future.

So now you’re a space craft of some sort.  I’ve been called a space cadet, so here we are, we can just imagine. So it’s 2050.  Are you with me so far?  Excellent.  All levels of government agree, okay   are you still with me?    that a well funded independent advocacy makes the NDIS work.  Waiting lists are non existent   are you still with me?  Keep focusing   nobody disputes the data or the evidence and there are safeguards for all.  Now, I know it’s a stretch, but let’s aim high, so panelists, you have five minutes to tell us the story of how we got there, what were the key strategies and why did they work.  So Peter, I fore warned you that you were going to go first and I would like you to take us off on your five minute journey.

PETER DE NATRIS:
Okay.  Racing car, racing car, but like all good racing cars, it’s well backed by the team that knows how to keep it at its most efficient and we have to have pit stops every now and then to make sure it absolutely gets to the finish line.

So the first thing I want to reflect on is I like the title of this session GPS potholes in the road ahead.  I don’t know how many of you know this, I do a bit of sailing and I like to navigate both by stars and by GPS.  But did you know that the GPS was a space based radio navigation system owned by the United States Government?  And actually in the war between Pakistan and India in the late 90s, early 2000s, they shut Pakistan out of it, they said we don’t want you to have access to this technology.

You start to think there’s a parallel to this with advocacy and the NDIS.  If you let them own you, they might shut you out or let you in when they want to.  So now we have over 120 different satellite navigation systems owned by many, many countries and private corporations and you actually get to pick who you want to be part of, so there’s a parallel here with advocacy because you fought long and hard for independent advocacy to stay outside of the NDIS and I would encourage you to make sure that’s part of the landscape going forward.  I would absolutely encourage you to think that if you do not do that, you may actually find yourself in a less powerful position going forward.

In thinking about 2050, no waiting lists and everything is working swimmingly, as outlined, I go back to the vision of the report because everyone today is stuck with the reality of where we have got to in the NDIS, rather than what was intended by the NDIS, and I like to bring people back to the vision.  It will be sustainable because the funding, it will minimise costs because it focuses on lifetime value, not immediate value.  It will invest in research and encourage innovation, and last of all it will develop the community to be more inclusive of people with disability.  That was the vision of the PC Report.  I just wanted you to do a little bit of a pick and flick in your mind about how we might be going with that.

The three key pillars of the NDIS was insurance, one that I am very, very fond of choice and control, and on the right hand side was mainstream and community about inclusion.  I think probably today what we’re hearing is that we’re very, very stuck in the insurance pillar and we haven’t really moved to choice and control and the inclusion part and I will continue to you that by 2050 the reason we got there was because of advocates, because of advocacy and the role that it played.

Choice and control in practice is very, very important to understand.  I am forever told off by my NDIA colleagues for lecturing them on choice and control, but I keep reminding them that central to choice and control is concepts of empowerment of people, treat people as equals, and take time to get to know people and understand their needs and wants.  All of these three key elements are everything I hear advocacy talking about today and you need to continue to talk about.  This is not going to be a magic pudding recipe.  It’s going to be determination, hard work and continuing to deliver those key messages, because I actually think the PC vision is a very good one and I think the NDIS in theoretical construct is the right one.  It’s just maybe an implementation we’ve got a little skewiff.  So from a racing car point of view I probably, talking from the NDIA, spun out on the first lap and I’m trying to get it going again.  Thank you.  (Applause).

COLLEEN FURLANETTO:
You’ve taken on the character so well.

PETER DE NATRIS:
I was going to be a VW, very unfashionable.

COLLEEN FURLANETTO:
Miranda, over to you.

MIRANDA BRUYNIKS:
Colleen, you asked about safeguards in 2050, so you said there will be safeguards for all, and before I launch into 2050 and safeguards, I just want to be sure that everybody understands what a safeguard is and a safeguard is something that is put into place to protect someone or to help them avoid and be prevented from harm.

So as you know, there are many things that can support and protect people, but in 2050 I want to let you know that I’ll be driving to work in my electric coupe driverless car, so one of those robots is driving it for me, and I get into work and I find that I’m just not needed because there’s no complaints, everything is working well in the sector and I can go and just focus on my grandchildren.  That’s what 2050 looks like from my personal perspective.

But what about what’s happened in the sector, what’s happened in the next 30 years to make it look like that?  Well, everybody here, people with a disability and families and everyone, feel respected, valued and they’re connected with each other, that they have a voice and they’re actually heard.  There doesn’t need to be a complaint because we hear what people are saying, we hear and respond.

And there’s strong, committed networks, which includes advocacy, both paid and unpaid, and university studies have shown that people who have at least one unpaid support in their life   and that includes many advocacy groups here, because I know people do give a lot of their free time, that that person has a greater sense of safety and wellbeing because of those supports.  Trained staff to deliver active support and recognise needs and resource and attention is put into the prevention of abuse and neglect.

As the Disability Services Commissioner, we take complaints about disability services and we look into matters and give oversight to matters where abuse and neglect of people have been raised.  In 2050 that won’t be the issue because we will have got there and instead of these formal or corrective safeguards, so the corrective safeguard of making a complaint, having a Commissioner, having a funding body that can terminate services, staffing will shrink because the sector will be working so well, we won’t be needed, and that’s in the corrective space.

But what’s the preventative space?  The preventive space is the people that are in this room, the preventive space is in fact those of you who assist others to speak up so that they can be heard and advocacy is a key strength in terms of raising issues and concerns which we have to do in today’s environment.  So we have a mix of formal and informal safeguards, but the developmental safeguards that are listed under the NDIS framework is where the scheme intends to go.  Those things that I mentioned before, where the informal safeguards are working so well that you don’t need to rely heavily on the formal ones.  Sadly, in 2017 that’s not the case.

COLLEEN FURLANETTO:
Thank you.  Mary.  (Applause).

MARY MALLETT:
First things first, in 2050, Australia will be a republic and we’ll finally have marriage equality, so let’s get that out of the way.

So by 2050 this group of people in the room, many of us will be dead, but anyway, our successors.  Let’s hope that when people come into this building if it hasn’t been knocked down and replaced by apartments there are people with disability working in NAB, they’re working in whatever they have in the back of the building where the bank people do their work, they’re working in the cafe, that people with disability make up the proportion that they should do of all of the people you see as you came here today, that instead of when you come in here for a disability conference, the only people with disability you see are the people who are here for the disability conference, you don’t see them because they’re here for any other purpose.  I don’t notice, maybe the rest of you but I certainly don’t.

We’re a segregated conference, here for a purpose, so people with disability and their allies and advocates are here together, but we’re not out there in the rest of the community and not visible.  So by 2050 let’s hope to God that’s completely different because if it’s not, what is the point of the NDIS, what is the point of any of the work any of us do if in 33 years time there isn’t an enormous difference where people with disability are employed in proper well paid jobs, that that isn’t even a question about them having to argue for support or having to take a decision to an appeal, that that huge bureaucracy, bureaucratic system that’s been built now, collectively we’re going to have to dismantle part of that to make it work properly.  So bureaucrats are building that system as hard as they can.  All of us will have to fight against it until we get them to moderate it.  It’s inevitable, it’s just the cycle that happens.  By 2050 there’s time for that to have happened.

One of the other things would be that working in the disability field would be a place where people want to be, disability employers will be employers of choice, that people who work in the sector would be well paid, they’d be well trained, they’d be fighting to come in to work in the disability field, rather than the other way around where disability service providers have increasingly trouble finding workers.

We can see   I was going to get you all to close your eyes and imagine, but it’s late on Friday, we haven’t got the energy to do that really.  If I could hypnotise you all, I would.  But all of us can see that the potential is there.  It’s just from where we sit right now we gathered that energy when Kirsten and the panel this morning were talking about the lead up to the NDIS and the energy that went into Every Australian Counts, there was this kind of bubble, a bubble of hope that arose at that time and I think the way things are playing out, there’s been lots of pins stuck in that bubble and we have to get up the energy to reinflate it and build something again with a collective energy and spirit that will sustain everyone here and all your allies and other people around the country that are trying to do this work, but with the understanding that it’s not   it is this dual thing.  It’s not as simple as naively some of us may have thought at the beginning that all we have to do is wish for this thing, magically get all the governments to agree to fund it and there we’d have it, that would be the solution.

Now we’re realising there it is, the NDIS is there and now all of us around it have to argue, advocate, fight, persuade, influence, every little thing we can every angle we can to get that turn into the thing it actually has the potential to be and by 2050 we will have got there.

COLLEEN FURLANETTO:
Excellent, thank you (applause).  We’ll move along, but I want to throw a bit out on those conversations about people with a disability, people of culturally linguistically diverse, we’re just one community and really simply it shouldn’t be that hard and it shouldn’t take until 2050 where we’re not segregated, we’re one and we’re respectful.  So it’s not a high bar to aim for, but I see this happening in the disability sector really well and I think we need to show everybody how well we can do that and part of today is going to show that for us.

So I move on to another question.  I’ll start with you, Mary, if that’s okay.  So we’ve touched a little on this already, but, Mary, could you be ever reliable electric car, what areas of systemic advocacy do we need to focus on the most and what will have the biggest impact and why?

MARY MALLETT:
That is such a complex question, isn’t it, and the reason of course is because advocates work with all the systems, so it’s not just the disability system, it’s not just the NDIS coming in and replacing the existing disability funding system, but actually for the NDIS to work and achieve its outcomes, and Peter spoke about the original object of the NDIS, for that to work all the other systems have to work as well, so education and health and mental health and child protection and justice and every one of those systems has to work.

And this is the most complicated part of this is because there are different agendas being played out and a huge amount of this is to do with the tensions and the money between the federal and state governments.  So the state governments fund all those other systems   the money does come through from tax overall, but anyway, the state governments are responsible for all this.  The Federal Government is now responsible for the NDIS, but with contribution from the states.

So how we can have influence on that relationship, those relationships between the state elements and the Commonwealth Government, that’s the biggest systemic thing and I don’t know, that’s a little bit of what DANA attempts to do, but it’s extremely difficult because the pressures on state governments can only happen inside a state.

You are the only people who can influence what the Victorian Government does.  The voters and residents in Victoria can put pressure on the Victorian Government.  People from anywhere else around the country can’t.  So there has to be this energy to push to each of the state governments to make them hold up their share of the responsibilities.  I know that’s a big picture thing, but it’s what I see is the biggest systemic issue.

COLLEEN FURLANETTO:
Thank you.  Gabrielle, Parliamentary Secretary, shared this morning that really Victoria in some ways is leading the way in the funding commitment, so I think that should be recognised and I certainly know, having the privilege of being the chair of the Victorian disability advisory council and the accessibility that I have as chair and our council does to Minister Foley is second to none that I’ve experienced and we just need to keep that drive in that fashion there and policy that works, let it keep on working, and then others that need to be tweaked, we just need to be identifying that as well.

So now I’ll move on to you, Peter.  Would you have anything that you could add there?

PETER DE NATRIS:
Yes, look, building on the direction there, the NDIS is more than just reasonable and necessary supports.  I think if you go back to the original intention, as I always like to do, it was about a more inclusive Australia.  It was about an Australia that saw all its population as citizens of that country and then defined as a resident of a state or a territory, not defined or captured by some description of their disability or their functional impairment.  I find that that part is something that we need to go back to square 1 on.  I think systemically the NDIS is moving in a direction that is probably not seeing the person first and that to me is a fundamental issue of advocacy for the NDIS and where it goes.

I’m going to give a little bit of a plug on some of the work that I do here and so I’m then going to extrapolate that out to something more practical and I’m going to choose employment today because it was something that I had a lot to say in a telephone meeting just before I came up on stage.  The reason I say that to you is that employment and indeed education can unlock so many worlds of possibility for anyone.  It wasn’t long ago that we all discovered that people with disability actually had skills and they had knowledge and they had things to contribute.  Then we jointly discovered that work was good for everyone, not only people with disability, for everyone in society.  Yet we still are in 2017 in an employment system linked to a welfare system that was actually designed   its policies were designed to keep people with disability out of work and in welfare.

So while we have an NDIS as an enablement strategy on one side, we have an environment on the other side that probably hasn’t caught up with the rights based approach and the equality that we are after for people with disabilities in employment.

So one of the areas of systemic advocacy that I think really needs a touch up is employment.  I think it’s one of the areas that so many people tell me that they are locked out from square 1, it’s something that they aren’t getting a fair chance in.

But that then goes to the work of those looking at systemic level, it’s at all levels and all interfaces that people with disability are not given the accessibility and offered the same services as all others.  So systemic advocacy is a very, very important part and I suppose my message here to you today was yes, through transition it’s going to be a lot of potholes and a bit wobbly and a bit ugly from time to time, but don’t lose sight of the big picture here of what the NDIS is part of and that is true inclusion for all Australians in all services that all Australians should be able to access.

COLLEEN FURLANETTO:
Thank you.

MIRANDA BRUYNIKS:
Empowering people to speak up for themselves is a big part of this systemic advocacy so for each person with a disability to have that empowerment, they need that support in terms of building those skills and everyone may be at different levels, but self advocacy and coaching people to raise their matters and manage them themselves so that we get a continuous improvement in the system is a big part of what advocates here do.  All of you sitting here in this room can consider yourself a protective safeguard, so you are a preventive safeguard in terms of raising those issues for people who do not have a voice because it’s all very well to say that we want to empower everyone to speak up, but we’ve identified a key risk in the system and particularly in the areas of abuse and neglect where people with limited capacity to communicate their needs and speak out are being taken advantage of and that’s unacceptable.

So advocacy is here to stay and advocacy is about speaking up for those who cannot speak for themselves and we see in terms of the future and in terms of the systemic work that all of you do as advocates and that government agencies, commissioners, and NDIS service providers, everyone has a responsibility to work on the climate and the culture of the sector and that’s very much about the way we do things, not just doing them.

So for instance the way we communicate and work together and collaborate to get results rather than if we feel like we’re being told what to do or the message or the service provider for instance is treating somebody with disregard.  That’s not going to work well.  Nor is it going to work well for any of our solution building in the future.  We all need to be able to work with each other in a respectful way and call out behaviours that are not respectful because it’s those basic human rights, it’s the basic   making sure that all services are underpinned by those human rights principles which means that we can listen deeply to ensure that safeguards are embedded in everyday work and the way we talk to each other.

In terms of evidence and data, it’s pretty clear that there’s a lack of evidence in relation to people with a disability and many agencies outside of the sector simply don’t collect it, so we’re overlapping now into mainstream services.  This is very difficult for people with a disability to go into a store and feel as if you’re invisible because nobody will engage.

So the chief strategy is we start to gather more information, data and evidence to continue to make changes in culture to continue to make changes in mainstream services and for instance starting early in education, where we know so much needs to be addressed.

COLLEEN FURLANETTO:
Thank you, that’s terrific.  I think to draw on a few points there, not everything needs to cost money.  I think sometimes we can think well, we need money, we can’t do it without, and at the end of today’s session we do have some homework that we will seek your assistance with and that will come at the end of the session.

But I would just like to   I don’t think it was stated today, but in Victoria there are 55 known advocacy organisations.  35 are funded by the state or the Commonwealth.  Victoria invests $3 million, with a further 1.5 extra for the innovation projects which has been done recently and again this is where Victoria is seen as a leader.  So I think that we need to yes there’s a lot to do, but not everything needs to cost money.

As a person with a disability, if I have an issue of something that needs to be fixed, I find that if I go with what could be a possible answer when I go to try to fix that issue or speak up about that issue, if I go there with a solution or potential solution, that’s usually received a lot more productively than just making my complaint which I am answer titled to do, but it’s great to go with an answer to what you think might help.

We’ll just have another quick question and then we’ll come to questions from the floor.  So Miranda, I’ll start with you, you’re in the red coupe, the hood is down, everybody can see you.  You’ve highlighted the importance of safeguards and how can we ensure that people with a disability have their rights upheld as systems transition and change?

MIRANDA BRUYNIKS:
So working together to ensure that people’s voices are heard, as we talked about before, ensuring that they have connected supports, that service providers are listening and that service providers are responding and I know with Gary, Gary talked before about that future world where complaints are not needed, but right now we need complaints to improve the system we have, so we’re not quite there in terms of a world where they’re not needed and it can be very exhausting and it can be very fatiguing.  So people need clear access to where they raise their feedback and where it should go.

The quality and safeguards commissions will not be established in Victoria it’s proposing until July 2019, so until then what do people do, where do they go, and we heard before about the AAT process.  But the disability services commissioner still takes complaints about disability service providers but doesn’t take complaints about the agency.  Complaints about the agency can go to the Commonwealth Ombudsman, to the agency itself, and then if a person is not satisfied, you get to go on that very long road that was described before.

But the important thing is that it shouldn’t be necessary to understand where all these complaints go.  It shouldn’t be necessary that the system is so fragmented that which have to dissect a complaint to understand which is the right body to take it to.  So people with a disability need to have the right to be able to go to one place.  We have an agreement with the Commissioner for mental health complaints and the Commonwealth Ombudsman that anybody who comes to us we will support them to get to the right place, and I think we’ve provided Melissa with a bit of a tool that she can forward to everyone, a tool that we provide for people to understand where they can take their complaints during the transition over the next two years.  That’s important in terms of the safeguard, is knowing where to go, because no one should be alone and no one should not have access to an advocate who can support them to raise their issues and be heard.

So thinking about choice and control and safeguards, we think about having rights upheld, we’re thinking about leading the type of life that everybody would want to lead.  And whether it’s going to school, work, being involved in the community, we need to ensure that people have safeguards in their lives so that they’re simply supported to do those everyday things and there’s no reliance on some of the corrective mechanisms that we have, such as a commissioner and other bodies to correct where wrongs have been done.

So it’s shifting the system, isn’t it?  How do we shift the system from where we are today to 2050 that was raised before to actually say we need to stop addressing these things because they’ve gone wrong, we need to get to the other side of the system where they don’t go wrong in the first place, and this is very much about what the NDIS was set up to do.  But the NDIS today is not the NDIS of the future because the NDIS today will be influenced by the voices of everybody in this room and will develop.  It is a new organisation very much in its first stages with lots of things to achieve, but we all play a part in helping this system improve and work and ensuring that we’re all on the one page, which is really only one outcome really, isn’t it, to ensure that people with disability are having their rights protected and that they can live the lives of their choosing.

COLLEEN FURLANETTO:
Thank you.  Mary, is there anything that you can add there?  You don’t need to.

MARY MALLETT:
It depends if I get another opportunity.  You talked a bit about Victoria leading the way and it’s true partly, not quite as good as I thought originally.  It is true that Victoria has promised to continue to fund the state funded advocacy organisations, but the way that that funding happens, some of it is funded under a category called advocacy and some of it was funded under a category called information.  That has been separated out in Victoria for a long time, but some advocacy organisations here get some of their money through the advocacy part and some through the information bit.  They pool that together and that allows them to run an organisation and obviously independent information is the initial stage of somebody doing advocacy.  They get independent information through an advocacy organisation that allows them to start making what they need.  So that money is stopping in Victoria in June 2019.  So that’s a problem.  That means that there is advocacy needed back to the Victorian Government to see if they will change that.

It’s not as bad as in the other states.  In all the other states and territories except WA, where we’re not sure what they’re going to do, but in all the others, the state governments are withdrawing all of that advocacy funding information.  In New South Wales June 2018, 10.9 million worth of state funding is disappearing in advocacy and information sector.  Then the same thing happens the following year, in Victoria some money goes but all the money in Tasmania, all the money in the Northern Territory, ACT it’s already gone more or less.

So there is actually a disaster looming for the independent advocacy sector.  The Commonwealth funding stays at the same level, it doesn’t increase, they’ve just pulled it out to June 2020, but the state funding collectively is more money than the federal funding.  So there is going to be a huge problem for advocacy overall unless collectively we fight against that.

COLLEEN FURLANETTO:
Thank you.  Peter, do you have anything?

PETER DE NATRIS:
Look, I think the only thing I could add is there’s no simple answer to this question.  It’s actually quite complex and if you think about change at the level of transition to the NDIS, in that it becomes a whole range of things you need to consider about the vulnerabilities of those that you are there to represent.

I’d agree with both my colleagues up here that this is probably not a time to be divesting out of advocacy, it’s probably time to be investing in more advocacy as part of a safeguard going forward.  So to me there’s something about getting a bit more of a considered dialogue going with all levels of government on this from a context of the safeguards particularly for those that are the most vulnerable that can get very much forgotten through what the NDIA is trying to achieve in the next short two years around the implementation of the NDIS.

The other thing I’d add is that there’s something in this around what are the best safeguards when you’re going through transition because often system safeguards are not as strong as maybe natural safeguards and I would contend to you that in the NDIS legislation there is a very, very important number of clauses that talk about assisting people through transition and it talks quite eloquently about the fact that that should be well planned, well resourced and well managed and part of me is compelled to say to you today as a person very passionate about the NDIS have a look at those clauses and if you’re working with someone that is going through the NDIS planning, bring it up as part of what’s required in first and second plan, that there is a need to support people who are very vulnerable through transition and change.  Natural safeguards are far more powerful because unfortunately whilst system safeguards are a very important structure, often they will miss the darkest spots that you’re trying to see into.

So I encourage you to have a look at that and see if that’s something that you can’t put in your suite tool kit as an advocate.

COLLEEN FURLANETTO:
Thank you.  Okay, so we’ve done very well, I’m very excited.  It’s really important we have time for questions from the floor.  I will give advanced notice that we can only go so far with the questions.  I do have a final question that I want to pose to our panel, which is how you can assist us immediately from today.  So we’ve got our roving mics people.  I saw a hand up over here somewhere.  Got it, thank you.

MICHELLE O’FLYNN:
I’m from Queensland, so I feel like I’m a stranger in the room.

COLLEEN FURLANETTO:
No, welcome.

MICHELLE O’FLYNN:
Thank you.  I’m Michelle O’Flynn, from Queensland advocacy.  We do systemic advocacy, but we also have legal and non legal individual advocacy.  My question is mainly towards Peter.  If it is 2050 that people with disability are running the NDIA first and foremost and if we are to safeguard people, then we obviously, as we’ve discussed, safeguarded advocacy.  My concern is around the quality and safeguards bill, the proposed bill, and very vulnerable people with disability perhaps being discriminated against and not having the same rights to autonomy and control in the NDIS to self manage and self direct their supports and services if they live with restrictive practices.  This group of people who obviously many of them will need advocacy, especially if they don’t have informal supports, but if they have the same rights as others to self manage their funds with a plan nominee, they are going to have a level of autonomy and control and perhaps then their communication will not be misinterpreted as challenging behaviour and there will be a reduction in the use of restrictive practices.

So my question to you, Peter, is that   and this is something we have banged on about for several years and we’ve been reassured, but I’m not reassured   that this will not be denied that group of people.  Can you tell me whether or not that is true?

PETER DE NATRIS:
The short answer is no, I can’t tell you whether that is true or not true.  It’s intended, but whether that’s what you see playing out is a different thing.  My sense is it’s got a way to go yet.  But I also challenge that if we’re just going to rely on the quality and safeguard framework, we’re probably going down the wrong path.

I think the rights of people with disabilities and particularly the group that you’re talking about is a broader issue than just the remit of the NDIA.

I am worried, though, as you’ve pointed out, that maybe it’s going down thinking it’s going to be a catch all and a solution to all of the issues that you’ve just raised.  I would say to you that that probably needs a bit of a rethink.

I would also point out the NDIS legislation now is five years old.  We are only operating in this new environment in sort of one legislative framework at the moment called the NDIS Act of 2013.  We have a policy framework called the mainstream interface principles and applied tables of support which are meant to codify what is the responsibility of the NDIS and what is the responsibility of all other systems.  The only other missing piece of policy or legislation that was required was the quality and safeguards framework, which is now five years on just starting to find its way into legislation, which I think in itself is an interesting path to take.  But that tells you how complex and how difficult this has been for the people that are thinking about this.

So my answer to you is that your concerns are well grounded, but you also need to continue to make sure that those messages that you just gave are continued into that conversation and that dialogue both at a state and a Commonwealth level.

COLLEEN FURLANETTO:
Thank you.  We have a question over here.

SPEAKER:
Peter, it’s really refreshing to hear somebody from the NDIA making the points that you have today.  I guess my question would be around I’ve heard, for example, that the kind of people employed within the NDIA are people like ex Centrelink staff with no background knowledge whatsoever of disability, no lived experience of it.  I’m wondering how do you change a culture within an agency that’s supposed to put people at the centre of everything that it does when you have people from backgrounds like that and is the employment and recruitment of staff something that needs to be better considered?

PETER DE NATRIS:
Gee, a great, great question.  So first of all   I don’t want to hog this floor, so I’m going to ask both of you to think about that question because I think a diverse range of views is a good range of views here, but let me first declare like all of you in the room, the day the NDIS was announced I celebrated and thought we’ve made it, we’ve got what we have been fighting for for the last 25, 30 years.  The building blocks underneath it, the shutout report, the Productivity Commission report, all of the other inquiries that the State and Commonwealth level culminated in something of absolute tangible worth that was going to give people with disabilities the respect and the regard that they deserved.

I never envisioned the way it is today on 15 September 2017.  I actually didn’t envision an NDIA.  I had a completely different view of how the NDIS would be administered and how it would grow and I very much keep reminding people that the NDIA are but the stewards and administrators of this scheme.

The scheme is owned by all Australians, all Australians and everyone in this room has a vested interest in it, so you should have your say in it no matter how frustrated you may be.  You should be continually pushing your views and that’s why I like the view that it will be run by the participants of the scheme in time, because they’re the owners of the scheme.  That’s why we’re here.

The NDIA when I started in it back in 2014   I came from New South Wales Government   I would say was roughly about 20% of people who would come from every Australian counts campaign, people who understood disability, people who worked in disability, people who had lived experience of disability, et cetera.  About 20% had come from other insurance schemes, lifetime care and support, accident and compensation, those thing, and about 60, to get the work force up and running very quickly, came from Commonwealth Public Service backgrounds   good people, all well meaning people.

I’m sitting, not standing, probably that now today is about 95% Commonwealth public servants and 5% of others and I think that in itself in the question that you have asked that goes to the very culture and the very understanding is an issue and it’s an issue I’m sure the NDIA will address.  I know that they’re starting to talk about it now already.  It’s something that I keep reminding them of.  There’s very, very few people who have   capable people who have come from state and territory disability systems into the NDIA from a policy strategy point of view.  So my answer to your question, which is a really good question, is yes, it’s an issue that we need to address and address as quickly as possible.

COLLEEN FURLANETTO:
Thank you.

MARY MALLETT:
One quick thing which is of course a lot of the work is contracted out to the organisations like Gary talked earlier and Brotherhood of St Lawrence, but all other organisations that provide the LAC or early childhood early intervention program.  But that’s both good and bad.

Those bits are not bureaucracies except that big organisations often have their own kind of bureaucratic systems, so you have two sets of cultures then, an NDIA culture and the culture of those organisations.  They may or may not align.  And one of the big things that seems to be happening, because advocates from all around the country are telling me, that LACs, they’re seeing and meeting and dealing with LACs who have no disability background, they’re coming in from other parts of the community sector or any other area, but they don’t know anything much about disability, and that’s a big problem because it means not only do they know nothing about disability, they know nothing about disability rights.

So for the advocacy sector at least within the previous disability system all the people who worked in it had been exposed to and knew about the CRPD, even if they weren’t upholding those rights, they bloody well knew about them.  Now we have a whole influx of people coming in who’ve never heard of the CRPD.  They might get five minutes induction that wafers it at them, but they don’t actually deeply know it.  For me it means advocates have to   you have to kind of consciously express and train and tell people in a way that you mightn’t have been doing in the last few years, you would have referred to the CRPD and you would have felt you mentioned article 19, whatever it is, people know what you mean, now you’ll have to explain it because the people you’re dealing with won’t know.

COLLEEN FURLANETTO:
Thank you.  Miranda, do you have something?

MIRANDA BRUYNIKS:
I think we can have one more, sorry.  Susan, sorry.

SUSAN:
My name is Susan Arthur.  I’m leader, President, sorry, of Reinforce incorporated, self advocacy organisation run for and by people with an intellectual disability.  I’m also the leader of the Powerful Parent Self Advocacy Group.

Mary, my question is directed at you.  You mentioned child protection.  If we are imagining it’s 2050, are we imagining that all parents with a disability are getting to keep their children with the support they say they need, not what some bureaucrat thinks they need, and to stop taking their children?  I’m also concerned about self advocacy.  We’re talking about 2050 here, but as it is reinforced we’ve been promised three years, so I really worry that if it breaks, who’s out there   I know we’ve got lovely people like yourself, but I think it’s so much different when self advocates come and tell people how it really is.  So I am just wondering if any of you have heard on the grapevine or maybe under the nest what’s happening with self advocacy funding.  Thank you.  (Applause).

MARY MALLETT:
I’ll answer the self advocacy one first.  So the bit of hope in the self advocacy world is that the NDIA has taken an interest in it and so they have funded the self advocacy unit in Victoria to do a project, a national project, and in October they’ll be bringing self advocates from every other state and territory together here in Melbourne to discuss what kind of model would work for funding and supporting self advocacy around the country.  So the agency has put at least a bit of money into that and I don’t know what their plan is for the future.  We don’t know that yet, but hopefully the fact that they are at least putting some thought and funding into the development of a model, maybe they’ll put more money into it as it rolls out.

The child protection one, that’s a huge issue and in every state and territory and on Friday there was a meeting, the NDIA senior people meet with the national peaks and the new CEO of the NDIA was there.  I had an opportunity to present stuff about advocacy and I used a case study about some young people, young parents with intellectual disability whose children have just been removed just recently and we did talk about the fact that the NDIS has to properly fund the kind of parenting support, parenting education, training, support, because they’re not doing it right now and these examples   the two advocacy organisations in the ACT both provided examples to me of the NDIA and child protection systems not working together.  We have one advocate in Tasmania has had eight child protection cases in seven weeks, eight parents with disability, mainly intellectual disability, whose children have been removed.  That’s one little part of one state.

This is a huge issue and Peter mentioned about the mainstream interfaces, that thing about how the NDIA works with and differently, because every child protection is different slightly in every state and territory.  So the NDIA was I think keeping itself inside a box and it will have to move outside the black lines of the box to make appropriate arrangements to properly fund what those parents need.

COLLEEN FURLANETTO:
Thank you.  I notice there were more questions, but sorry about that.  But I do want us to leave   maybe 32 seconds each, what needs to happen immediately to achieve our 2050 vision and what are the three key things that advocates here today can take away and do tomorrow?  Mary, would you like to talk to your

MARY MALLETT:
On your tables, I didn’t have enough of them because I just photocopied a few before I came down last night, we’ve put a couple of things on your tables.  Can somebody hold up the advocacy matters sign.  Thanks.

There is going to be a campaign to try to save the state funding of advocacy, #advocacy matters will be used, maybe others as well, that will be one used consistently.  What we want, and you can start today this minute as soon as you finish the session, get your phones out, take a photo at each table, take turns with taking the photo, I don’t know why, you have to take it landscape, horizontally, you can’t take it portrait or vertically.  Take it with your phone on its side.  All I want is your head holding the sign saying advocacy matters and on the back of the paper it’s got my phone number and email address to send the photos.

We’ll gather these around the country and send signs and instructions out to every advocacy organisation for you all as you do your work when you are out at a court, Magistrate’s Court, at the police station, you’re out doing advocacy work, we want photos of the places advocates work, the people you work with, so photos, whichever of your advocacy clients will agree to having their photo taken, we’ll send consent forms and the rest, but just build the picture.  We’ll get advocates in Pilbara, advocates in Burnie, in every part of the country and city taking photos to show the huge network of people doing this work and who collectively need to push back now against, with the NDIA and to governments to persuade them advocacy is important.

So this is very basic grassroots campaigning, but all of you can do it.  So you can start this afternoon, as soon as this session finishes I want to see all your cameras in your hands, I want to see all of you take photos and send them to me.

COLLEEN FURLANETTO:
Thank you, Mary, we have a few more seconds.  So Miranda.

MIRANDA BRUYNIKS:
Choice and control is one end of the spectrum and basic health and safety is of everybody, people with a disability and everyone around them, is the other end of the spectrum.  We’re right now travelling in the middle here.

What disability advocacy services can do is to call out abuse and neglect when it happens so that it becomes a thing of the past.  We have to address it and we need to address it now.  It’s not something that can wait until when we’ve sorted everything else out.  Disability service providers in effect need to be able to hear people and support them in a way that’s respectful, but we all need to work together in a respectful way, focus on relationships and the humanity of people, whether they’re people with a disability, service providers, NDIS staff or others, and one way to do that is to catch somebody doing it right.

So when you see something that works really well, then help all of us, the NDIS and everyone, to see this is what really works and this is what will take us to choice and control because we need to see more of the good examples so that we can get some demonstrations and leadership of how that works.  Thank you.  (Applause).

PETER DE NATRIS:
To finish off very much on that theme, one thing you can start doing straightaway is getting to know who you can send these messages to.  I think the #advocacymatters is one part, but there’s another part, that is the real issues for people that you are helping and representing and advocating for.  I would say to you it is a bit of a moving feast, but find out who your allies are in the NDIA, get to know them, get to understand them, and make them your best friends.  (Applause).

COLLEEN FURLANETTO:
Thank you.  Pretty much just in summarising there, basically a Dr Phil quote, you can’t change what you don’t acknowledge.

If I could just leave you with advocacy the way I would like to see it is Australians with disability valued as ordinary citizens achieving and creating.  Yes.  Thank you.  (Applause).

Could you all hold up your hashtags and we’ll get a photo from the front, if that’s okay.  Just spreading out, awesome.  Excellent.  Thanks so much, that’s great.

 

SDAC17 delegates showing their support for the national advocacy matters campaign by holding up the #advocacy matters signs

 

MELISSA HALE:
Thank you, everyone.  What an amazing session.  Thank you very much.  There’s still a lot of potential for the NDIS to be as amazing as we hoped it would be, so thank you very much, everyone.

(Applause)