El Gibbs

PROFESSOR SIMON DARCY:  Hello, everyone.  I can see that there's just over 100 people in the room now so I'll get started.  Thank you for joining us for today's event.  Firstly, I would like to acknowledge that wherever we are in Australia, we are on traditional lands of First Nations people. I acknowledge the Gadigal people of the Eora Nation, upon whose ancestral lands UTS City Campus now stands, and also where I am joining you from today.  I pay respect to the Elders past and present, acknowledging them as the traditional custodians of knowledge for this land and their ongoing connection to Country and culture. I further acknowledge the traditional owners of the Country where you are joining us from and pay respects to their Elders.  So hello, or in my best Gadigal, (speaks in Gadigal language).  My name is Simon Darcy.  I'm a Professor in Management at the UTS Business School and the co‑lead of the UTS Disability Research Network.  It's my huge pleasure to be welcoming you all to today's conversation and celebrate the launch of the UTS Disability Research Network. 

 

I'm delighted to be joined by a distinguished group of speakers: El Gibbs, Dr George Taleporos, Fiona Given and Dr Linda Steele, who I'll have a chance to introduce properly shortly.

 

First, a couple of pieces of housekeeping.  Today's event is being live captioned.  To view the captions, click on the CC closed caption button at the bottom of your screen in the Zoom control panel.  We are posting a link in chat now which will open captions in a separate internet window if you prefer.  If you have any questions during today's event, please type them into the Q&A box, which you can find in your Zoom control panel.  You can also go in there and like other people's questions.  I will have time to put some of your questions to our panellists at the end of the formal questions.

 

Today's event is in partnership with UTS's Centre For Social Justice and Inclusion and it's my pleasure to welcome the Executive Director, Verity Firth, to also say a short welcome.  Verity. 

 

VERITY FIRTH:  Hello, everybody.  Thanks so much for joining us here today.  I'm particularly delighted to be part of this celebration and launch of the UTS Disability Research Network.  The UTS Disability Research Network is a hugely exciting step in UTS's work to address current and future issues facing people with disability.  UTS is bringing its strength in interdisciplinary research in fields such as business, design, health, law, science and technology to bear on issues of social justice and inclusion of people with disability.  Importantly, the Network is driven by talented researchers with lived experience and centres people with lived experience in its approach. 

 

An estimated 1 in 5 Australians, which is around 4.3 million people, live with disability.  They may live with impacts on their movement, vision, hearing, communication, learning, cognition, social engagement and mental health but disability itself arises as a result of a complex interaction between the person, the physical environment, social structures and attitudes. Everyone will benefit by making our world more inclusive for people with disability.  The Network will address all areas of life, including education, employment, housing, freedom of movement and freedom from abuse to promote systems and policies in Australia and, beyond that, to support a fair, inclusive and thriving society.  I'm really delighted to be joining you all today for this launch of the UTS Disability Research Network and I'm really looking forward to hearing the expertise of this distinguished group.  Thanks, Simon.

 

PROFESSOR SIMON DARCY:  Thank you very much, Verity, and I would like to amplify Verity's kind words about the UTS Disability Research Network.  It is truly a whole‑of‑university approach to examine disability issues that crosses boundaries of disciplinary knowledge, that places the lived experience of people with disability and those groups that collectively represent disability at the centre of our engagement.

 

So now for today's event. Simpler, faster, fairer ‑ those were the stated goals Minister Stuart Roberts, who was the Minister for the National Disability Insurance Scheme until April this year, had for the proposed changes to the NDIS.  Independent Assessments were the centrepiece of those proposed changes, legislating changes to eligibility and planning processes for the NDIS, which would subject nearly half a million people with disability on the NDIS to assessments performed by unfamiliar health professionals who may have no knowledge of a person's impairment or support needs. There is no way that those assessments ‑ in a few hours, no less ‑ could consider someone's mobility, vision, hearing, Deaf, intellectual, cognitive, psychosocial, neurological, communication, swallowing, self‑care, sexuality, social, education and employment supports and all areas of life that make up our citizenship. 

 

In response to the backlash and campaigning from the disability community, the Government has now scrapped or stepped back from Independent Assessments and is hopefully returning to the drawing board. Independent Assessments reflected a lack of adequate engagement with the disability community.  Rather than make the system fairer, feedback from those who had gone through the trial assessments believe it made it harder for people with disability to convey their needs and denied supports and deepened inequalities across. 

 

So, from now on, the Government has committed to better engage the disability community and co‑design any changes to the NDIS. We, the disability community, want to see the NDIS thrive, and for many, the scheme has provided previously unmet needs.  We are here today to look at what can be done to make the NDIS better, with systems and policies that promote fair, inclusive and a thriving society. 

 

But, as reported, the Government's real goal may not be a simpler, faster, fairer NDIS but a more affordable and sustainable one.  So will it be possible?   I am delighted now to go to our panel  El Gibbs is a disabled person, a disability advocate and an award‑winning writer, with a focus on disability and social issues.  El works in communications and systemic advocacy and is currently writing a book about the NDIS.  I'll be buying that one, El.  Welcome.

 

Fiona Given is a Research Project Manager at UTS.  Fiona sits as a general member of the New South Wales Civil and Administrative Tribunal and is on the boards of Side by Side Advocacy and Assistive Technology Australia.  Fiona completed her arts/law degree at Macquarie University in 2003. 

 

Dr George Taleporos has held many positions and is also Chair of the Victorian Disability Advisory Council.  He's Director and Manager for the Self Manager Hub and a board member of In Life Independent living.  George has more than 20 years experience in the disability field, focused on advocacy, human rights, policy practice, service development and management.  He is a regular writer for Every Australian Counts campaign, has been published in books, peer‑reviewed journals and in a range of media outlets.  He is also the host of the very popular podcast Reasonable and Necessary, Australia's premier podcast on the NDIS.  Welcome, George.  Good to see you today. 

 

Dr Linda Steele is a socio‑legal researcher working at the intersections of disability, law and social justice at the UTS Faculty of Law.  She has been researching disability law and social issues for over a decade, having previously been a solicitor with the Intellectual Disability Rights Service Sydney.  Her research is directed towards thinking more creatively and critically about how we engage with law and order to achieve social justice. Welcome, Linda.

 

So, to the panel and the first question. I'll be addressing this question to George but I also open up George's question to El and Fiona and Linda, and George would prefer to give shorter answers and work in conversation with others.  So, George, for you to kick off the question and others to contribute, the Government is calling for a simpler, faster, fairer NDIS.  I want to pose to you: does the NDIS need to be changed to make it these things and, if so, how?

 

DR GEORGE TALEPOROS:  What a great question to start with, Simon.  Thank you, and thank you for having me on this event.  It is very exciting to be here and I would like to pay my respect to Aboriginal people and the land that I am on, the Kulin Nation.

 

I really think that the most important thing here is to listen to people.  If you want to make it simpler, faster, fairer, you need to talk to people with disabilities ‑ NDIS participants, families, people who have first‑hand knowledge of the NDIS and also people who advocated for the NDIS many years ago, like me.  We really had a very clear intention when we advocated for the NDIS, and that was that people get a funded package that was based on their need and their health and they can then decide how to effectively spend that money.  There was that aspect and then there was also the other aspect, which was what we know as ILC, which is the capacity building, which is often the neglected cousin, so to speak.  I think we need to acknowledge that as well.

 

I want to stress that to make it simpler and fairer, we need to go back to basics and think about, well, what knowledge do people have about their needs?  Well, they're the experts.  We know our needs better than anyone else.  So what I want to put to the NDIS is an idea that sounds a bit radical, and that's the idea of self‑assessment.  Why can't we self‑assess with support from allied health as well and then come up with a clear statement of our needs and that would be a way to simplify it and make it what we originally intended. 

 

PROFESSOR SIMON DARCY:  Thanks for those opening comments, George.  El or Fiona, have you got anything to add to George's opening statement?

 

EL GIBBS:  Fiona, do you want to go?

 

PROFESSOR SIMON DARCY:  Fiona is just using her assistive speech and will come in.  Your microphone is still off, Fiona, too.

 

FIONA GIVEN:  I endorse what George just said.  I think it is imperative that we have professionals who know us. 

 

EL GIBBS:  I totally agree, Fiona, and I agree with George around the challenges around this.  I think the self‑assessment idea is a great one but one from very early days of advocacy around the NDIS.  But I also really want the NDIA to stop and reflect about what's actually happened and the deep disconnect with people with disability and families about the reforms that they were proposing.  We spent a year fighting this and a year wasted of actually fixing some of the problems with the NDIS and I think it would be good for them to have a think about that, to listen to us, but also to stop what they're doing around some of the other reforms, like the personalised budget tool as well because that does depend also on Independent Assessments. 

 

PROFESSOR SIMON DARCY:  Thanks, El.  Certainly we saw the community come out very strongly around these issues, but I also was heartened to also hear some of the State Governments speak out about the system that was going on as well, and given that it is supposed to be a Commonwealth/state engagement, I think that was also showing where those disconnects were occurring.  So, George, going back to you, Minister Reynolds, the current Minister for the NDIS, has committed to a person‑centred model for assessing access and funding levels. What does that mean and do you think that's the right approach?

 

DR GEORGE TALEPOROS:  Absolutely.  There is a need for a person‑centred approach. We use these words "person‑centred" but do people really know what it means? Well, that's what matters, that people actually understand that being person‑centred is about putting the person at the centre of decisions.  That means that they decide what supports they need and they are also central to decisions about how the NDIS will work. 

 

Now, what concerns me is that there has been a real rush to get this done and that we haven't really had a lot of time to look at the data and to understand the problem that the Government has been putting forward.  Full credit to Minister Reynolds, who has done a much better job than her predecessors.  Well, how can you do any worse?  I don't know.  But she's done a great job in putting forward the data.  But, remember, it was only two years ago when the NDIS funding was in surplus and it went to the farmers, right? So suddenly there's been this turnaround and we're in this funding crisis.  Well, let's look at the data and seriously understand what the problem is and then we can start talking about what we need to do to address the problem. 

 

I think what we do know is that the NDIS at the moment is far too complicated.  People are having difficulty in getting their plans.  They take a long time.  It's very slow and the decisions that come out often don't reflect the person's needs.  So I do think that we need a new model.  Now, what that model looks like ‑ I think firstly it needs to reflect the United Nations Charter on the Rights of Persons With Disabilities.  Article 19 says that people have the right to decide where they live and who they live with.  However, the NDIA are making decisions that are forcing people into group homes.  That's not OK.

 

So I will let other people join in this conversation but I really want to stress (inaudible) needs to be at the forefront, so too a feedback and appeals process that is accessible and fast.  People are waiting a whole year to review a plan that expires in a year.  That does not make sense. 

 

PROFESSOR SIMON DARCY:  Certainly a number of points that you have just made there, George ‑ firstly, going back to giving us a good look at the data, so there's a transparency issue with respect to some of the arguments rolled out, particularly by the Treasurer, and creating a discourse of over‑spend, where,as you rightly corrected, that was a $4 billion under‑spend only two years earlier.  So it would be great to be able to work through those figures with government and make that approach. 

 

I will just open it up to El or Fiona.  The word "co‑design" is thrown around a lot, and if we're moving back to have discussions with the Minister, what does ‑ and I'll throw to El first ‑ what does co‑design really mean to you, El, and how do they do it right?

 

EL GIBBS:  Co‑design means ‑ I mean, in this particular context, I think it means that it starts with the premise that disabled people have an equal say in the changes and the developments about the NDIS.  As George was saying, people with disability and families were there in the very beginning to design and fight for the NDIS, and we're not just another stakeholder to tick off their list, which was very much the process around Independent Assessments.  People who use NDIS supports are the experts and they know what needs to happen to make the NDIS work better but it's too often presented as though we're people to be talked at, rather than with. I think with the data deluge, I agree it has been great to have more information but I think it's been really challenging to hear people with disability who use a lot of support being talked about as the problem.  I think that some of the framing about this ‑ I have read the actuary report, I have read the quarter 3 report, I haven't got around to reading the quarter 4 report yet, but it has been presented as though the people who use a lot of support are the problem.  I think that that is extremely problematic framing by the NDIA and by the Minister.  I think it's good to challenge some of those ideas around functionality and some of that really gross language that's been used around the supports that we need and use every day.  I think it's a really ‑ as George says, it moves very far from the CRPD language that is actually in the NDIS Act and is meant to underpin this kind of stuff. 

 

PROFESSOR SIMON DARCY:  And certainly we know that care in the community is a much better and more efficient option than any other options that we have moved away from over the past 20 years with respect to any form of institutionalisation.  So if a person has high support needs, those needs are much better met for everybody in the community.  Fiona, do you have anything to add there?

 

FIONA GIVEN:  It goes back to nothing about us without us.  I think true co‑design is including people with disabilities every step of the way. 

 

DR GEORGE TALEPOROS:  That's right, Fiona, and let's maybe move beyond co‑design and talk about co‑production because we want disabled people to be part of this every step of the way.  We don't just want to be around the table making a few decisions at the start.  Like, involve us in the evaluation, in the implementation.  It's really around the entire cycle of what policy change involves. 

 

As a policy nerd, one thing I have learnt the most about this in the last two years or year and a half is how not to do policy.  You don't make ‑ and this is what the Government did.  They made an announcement, then they looked at the data, then they consulted and guess what? That was a complete disaster.  When I tell people how to do policy, I would be like, "See what they did back then? Do the exact opposite". 

 

PROFESSOR SIMON DARCY:  It's a good point, George.  As somebody that taught a government policy subject, you want policy to be appropriate, effective and efficient and you want it to be well planned, and certainly not just within the disability scope but announcements are made and then phones are picked up.  We have seen that recently with GPs who were inundated by phone calls around vaccination.  Hopefully we will come back and we will talk about COVID towards the end again. 

 

DR GEORGE TALEPOROS:  Can I also add one more thing? What the Government was trying to solve was a real problem in terms of the complexity.  The fact that we have planners that are all over the country making thousands of decisions and doing it in a way that's really inconsistent and often not terribly informed is a problem.  But the solution that they put up was the wrong solution and the process that they took was wrong.  So in terms of the policy ‑ well, that's still there.  We do need to address the policy issue that we have with the NDIS. 

 

PROFESSOR SIMON DARCY:  Very good points, George.  As another person with "high support needs", I can't tell you ‑ I'm a Professor in a business school.  I'm reasonably well informed.  You feel such dread going into a few weeks of literally the worst exam that you have got to sit every year over and over again because you don't feel that you can leave anything unsaid, that the supports that have been there ‑ you still have to talk about those ones that work well and why they work well, just in case it gets left off the agenda in redoing the plan, or between the conversations between the: LAC ‑ sorry, Local Area Coordinator and the planner.  We all start talking in abbreviations too often around these issues. 

 

So they're very important points about complexity and also the level of sophistication of every form of communication that you have ‑ verbal, written ‑ and remembering that these are plans that are based on paper and evidence of "support", that everybody has to go through on an annual basis, even though this could be your fourth or fifth plan and there's a fair likelihood that somebody like me isn't going to have a miracle cure over a 12‑month period and that we have a permanent disability and our supports become reasonably well‑known through the pattern of data they've got as well.  So I would like to move to an associated issue and pose this question to Fiona.  Do you feel all NDIS participants have the lauded choice and control in the offerings that they have from NDIS and their other supports?

 

FIONA GIVEN:  I don't think all NDIS participants have choice and control, particularly those participants living in supported independent living group home style accommodation.  It seems as if their lives continue to be governed by the large disability organisations that run the group home.  Unless they have significant self‑advocacy skills, they tend to get caught up in the system.  Day programs create a similar situation.  This was not what the NDIS was meant to be about.  Whereas people like myself, who only require drop‑in support, have far greater choice and control. 

 

PROFESSOR SIMON DARCY:  So opening up to George and El, there still appears to be some real issues around people that are in either supported independent living housing or the SDA housing, and Fiona has brought up some very important issues around being able to individually advocate within those situations.  George or El, any comments?

 

EL GIBBS:  Yes, I think this is one of the real ‑ we have talked about inequalities in the NDIS and I think this one about who actually gets to make choices and who has control is one of those.  I totally share Fiona's really strong concerns.  At one of the recent Disability Royal Commission hearings, we heard from one of the big disability providers and they talked about how people who lived in their group homes got ‑ this was from Sunnyfield and they got Sunnyfield's support coordination that just happened to recommend they go to Sunnyfield day programs and that they work in Sunnyfield sheltered workshops and they use Sunnyfield personal supports and that they couldn't possibly change any of that because it might be difficult to do the rosters.  They had a revenue that's approaching $100 million a year, and half of that is coming from people who get supported independent living funding.  And this isn't choice.  This is where people with disability are becoming kind of a commodity, rather than actually being a consumer or having a say in choice in a market.  So I think there needs to be a conversation around market regulation and that actually puts some of the rights of people with disability, like article 19, like George said, like choosing who they live with and where they live, that that actually is part of that market regulation as opposed to who gets to make profits. 

 

DR GEORGE TALEPOROS:  Can I absolutely support what El and Fiona have said and say that when we were developing the NDIS and we got a sniff that service providers would also be support coordinators, as advocates, we were like completely horrified by that idea, but somehow they got away with it; it's allowed.  There's something in the standards that says about managing your conflict of interest, but that's not enough.  Like El said, we have seen people's whole lives entirely captured by a service provider who has absolutely no ability to manage the conflict of interest because it's a bottom line dollar for them.  You need other independent people in the picture.  You cannot have one provider working in someone's life entirely.  It's not OK. 

 

PROFESSOR SIMON DARCY:  Some very important issues that have been raised there around an individual person's agency within where they live and the relationship that has with their "service provider".  It's a very similar system to what used to exist with block funding, which we were hoping not to have to deal with those issues again.  Fiona, just as a follow‑up, what do you think can be done to facilitate greater choice and control for those individuals that are in that situation?

 

FIONA GIVEN:  In order to facilitate greater choice and control, we need to stop warehousing people into group homes and day programs and making them beholden to large disability services.  This is effectively a continuation of the old system.  All people with disability should be given the opportunity to live their own lives as opposed to clustering people together according to their needs.  We should be accommodating their preferences.  As George said, this is mandated by article 19. 

 

PROFESSOR SIMON DARCY:  Thank you.  With those comments around choice and control, I'm just going to segue to the first question that I had for El because it fits in very well.  The NDIS has said to have marketised and privatised disability service provision.  This has been celebrated by some in terms of positioning people with disability as consumers who have optimum choice and control of their services and supports.  We know that's not true.  I would be interested, El, just to get your comments on what you see to be the advantages of marketised and privatised and what, in your view, are some of the issues that have arisen with this new system of commoditising the disabled body. 

 

EL GIBBS:  Yes, us becoming the tin of beans rather than us choosing the beans. Look, I am not sure privatisation is a super‑helpful concept around the NDIS because it's true in some ways but not in others, and I think it erases the ideas around individualised funding packages and whole reasons that disabled people and families have fought for that system as opposed to the original block funding system that was enormously problematic.  So I think it's important to separate the ideas around individualised funding packages, and this was fought for by people with disability across the spectrum, so people with intellectual disability and families, people with physical disability, as a way out of the old system, the one‑size‑fits‑no‑one, and I think separating that from the marketisation is really important because they're sort of two separate concepts to talk about and often they get conflated in a way that erases the agency of people with disability to talk about how we want to manage our own supports. 

 

Individualised funding has worked in lots of ways.  In Victoria there was a model that worked under state funding and in other places overseas as well.  But I think it is really ‑ I think we have to be realistic about the power that large disability providers in particular have in our space and often I read papers from the NDIS that use extraordinarily passive voice that just erases the power of disability service providers in many disabled people's lives and the people that they have to influence decision making, as George outlined, around including support coordination with just, "We'll manage the conflict of interest", and I think we have to be realistic and put the safeguards in place to make sure that how we understand markets over there is also ‑ we take some of those lessons into how we understand markets here.  So I am a sceptic around markets providing us with choice control but I do think that individualised funding has a long history of being connected to the disability rights movement and I think it is important to understand that. 

 

PROFESSOR SIMON DARCY:  George, any follow‑up comments on that question?

 

DR GEORGE TALEPOROS:  Yes.  I love this conversation.  I was thinking about an example because I have a bit of a sociology background as well and this stuff gets me a bit excited ‑ the commodification of disabled people.  What worries me about the NDIS is that we do become commodified to the point where, you know, say I want a friend to go out for a walk, and they're like, "Well, don't you have a support worker to do that for you?". Like that would be the worst outcome and I am already seeing it.  I am hearing about people who are visiting a friend, for example, who used to have a community group that they would go out for a walk with, but since the NDIS, that community group has gone under and the only way for him to do this is to have a support worker.  Now, that was not the dream.  That was not the plan.  The plan was that the community is central to people's lives and I really think that we need to focus a lot more attention to the ILC elements of the NDIS so that the commodification does not take over our lives and that we are valued community members, not for our money or our plan, but for the people who we are. 

 

PROFESSOR SIMON DARCY:  Thanks very much, George.  I see Fiona ‑ no? No contribution there.  I'll just pick up on a few issues that have been raised by El and George. There is why we want to work from not just a university perspective but a policy perspective.  Economists could just not understand how supply and demand isn't the best way to sort this system out.  People are consumers and they have money to spend.  That will be met in an optimal way by the market through the mechanism but you really do need to get the policy and sociologist to really understand what it means to have a life that you value and the sociality that is built around that, and that maybe the market mechanism needs to be humanised to support those groups that have gone under, so certainly looking at the size of some providers, the relative diversity in the sorts of organisations that are providing support and how creating a community engagement for people is more than the market mechanism.  So really important conversations to be having. 

 

DR GEORGE TALEPOROS:  There's also a role here, I think, and I want to give a plug for self‑management here.  There is a role for self‑management. If people have control over their funding, then there is the opportunity for them to have flexibility, for them to spend their funding in a way that maximises community connectiveness.  That could look as controversial as purchasing a football season ticket for a friend, and part of that is like, "We are at the footy and they can help me get a drink and a vegetarian pie."  That should be a lot better for the NDIS, in that you save all that funding that you would spend on a support worker, but the connectedness and the connections are the things that will add value to your life.  Self‑management is really underestimated for its potential, I think. 

 

PROFESSOR SIMON DARCY:  And what that is also doing is extending networks in classic social capital, that you've got a season ticket, you're in a particular environment with a range of people you wouldn't otherwise meet, and that thing that is binding the community together is the shared love or passion or whatever that happens to be, and those desires are very different for each one of us with disability.  For others, it is arts.  For others, it is just having time alone away from the support workers.  If your normal schedule means that that you have needs that may need to be met by others, getting away from paid attendant care for friendship circles is a far more terrific use of that money.  But wrapping it up in a policy sense is incredibly complex because there may be adverse reactions towards what people are "spending their money on" or what others might say: "Well, that's the public purse".  There's a need to be accountable in that sense.

 

El, second question for you and it comes back to what we have seen around the reaction against Independent Assessments.  Through the collective efforts of advocates, including yourself campaigning against the Independent Assessments, government has committed to go back and review the system, look at co‑designing, et cetera.  I am interested in getting your thoughts on the importance of collective advocacy in the NDIS space and the role that has to play that is much more than all of us as individuals?

 

EL GIBBS:  It's how we got the NDIS in the first place.  I think the Government and the NDIA certainly, senior leadership in the NDIA, under‑estimated how angry disabled people and their families were about the changes that they wanted to bring in, and how distressed people were about the way that they were behaving, and the things that they were saying about disabled people, about the NDIS, about any concept of sustainability I think just totally freaks people out.  That was something that ‑ I am sure George and Fiona will concur ‑ I found it very difficult to convey as an individual to the Government, and in some of my work roles, it was very difficult to get them to hear how distressed and angry people were.  But I do think that that collective action and being able to take that collective action kind of showed them that disabled people are a mighty force. 

 

One of the things that I say often is that we have to fight all the time.  We have to fight to go to the supermarket.  We have to fight to do so.  Well, I do.  So we're really good at it.  We're really good at fighting.  So when we fight together, we can really change things and there is a long, proud history of disabled people fighting their way out of institutions, fighting to have rights, fighting to be included, all of that stuff, and I think that the NDIA under‑estimates us and it's at their peril.  But I would like to see them harness that energy and experience, fighting for change and get us to fight for an NDIS that works better and is less complicated and make sure that those of us who have the least get the best out of it.  That's what I want to see.

 

DR GEORGE TALEPOROS:  I have to add something, if that is OK, Simon.  I wrote about this back in April ‑ March or April.  I wrote an open letter to Stuart Robert, the Minister, that was published on the Every Australian Counts website.  El is absolutely right.  We are damned good at fighting and we will fight you if you stuff with us.  She is absolutely right.  What I feel like is that we spend all this energy fighting when that energy could be spent working with people.  We fight because no‑one is listening.  What I want is a government that listens and works with us so that we don't need to fight against the Government.  That's where I am hoping we are heading, and I think that there's potential that we can do a bit less fighting and a bit more co‑existing. 

 

PROFESSOR SIMON DARCY:  When I look through people's backgrounds with everybody on the panel today, everybody has volunteered a great deal of their time for the community over a long period of time and that goodwill that the community put in can be harnessed in a very positive way instead of getting people upset all the time and that energy being negative.  We all want the NDIS to work.  We want it to work in the simpler, better, less complex way and we're happy to help.  So maybe one of the voices going back to the Minister from today is: "Come and talk to us; we're willing to help in any way we can". 

 

I am just cognisant that we are coming towards the end of time and we do want to get to a question or two from the audience.  Linda has been very quiet there today down there in the corner.  I do want to bring in the connection with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.  It's given a very broad remit to explore violence in all settings and contexts.  Linda, what lessons are coming out of the Royal Commission for the NDIS and what have you seen in your work with and around the Commission that can be a real learning for the NDIS to be simpler, fairer, faster?

 

DR LINDA STEELE:  Thank you, Simon.  I guess if we look to the interim report of the Disability Royal Commission, they identified a number of concerns around even being able to access NDIS as well as the quality of the kinds of services that people could access and issues with planning processes, so many of the issues that had been raised by Fiona, George and El.  But also something that has really come out in the NDIS ‑ sorry, in the Disability Royal Commission that relates to the NDIS is the issue which we haven't really touched upon yet, the issue of restrictive practices.  So the NDIS legislation says that part of the purpose of the legislation is to give effect to the Convention on the Rights of Persons with Disabilities but the NDIS legislation also permits NDIS‑funded services, whether they are residential, employment, to allow the use of restrictive practices in service provision, and without the consent of participants.  So that can be locking someone in their group home.  It could be using medication to sedate them.  It can also be in relation to women with disability.  It can be non‑consensual use of contraception to suppress menstruation to make them easier to provide that personal care to.  So I think that the Royal Commission is exploring restrictive practices as a form of violence and I think there's some really important questions to ask about how do we reconcile the NDIS being framed around the Disability Convention, choice and control, et cetera, when this kind of violence is also designed into that system. 

 

PROFESSOR SIMON DARCY:  Extraordinary violations of people's human rights and tremendous work also around all those issues to do with women's rights in every sense in the Australian community still occurring today.  Shocking even to hear.  George, Fiona, El, any further additions to Linda's terrific contribution there?

 

EL GIBBS:  She's completely correct but also I think we have been hearing a bit about the Free Britney movement and the conservatorship that Britney Spears experiences and lots of people have been rightly outraged that she has had reproductive coercion in her life and not been able to make decisions about it.  But then, on the other hand, people have said, "But it's totally fine when it happens to disabled people."  It's not totally fine.  It's really not totally fine.  So I think we need to have a look at ‑ and I really respect Linda's work around these legal forms of violence that happened to disabled people, that don't happen to non‑disabled people, and we need to really look at where the NDIS enables this.  When we talk about things like market regulation, this is what I mean about making sure that disability rights are part of this because we can't have a market let rip that just makes sure that we continue to experience violence and abuse and coercion and exploitation and that that's legal under the law. 

 

PROFESSOR SIMON DARCY:  George?

 

DR GEORGE TALEPOROS:  I agree with everything that has been said.  I am also concerned that this Royal Commission hasn't delivered a terrible lot in the 18 ‑ I don't know how long it has been around now, but when are these recommendations going to be put forward? We really need to see more than just talk.  All we are hearing is talk out of this Royal Commission.  I have seen very little in terms of policy, advocacy or change. 

 

PROFESSOR SIMON DARCY:  I think, George, there is another 18 months to two years of hearings, and then recommendations will be made. 

 

DR GEORGE TALEPOROS:  Yes, but normally ‑ at the first‑year interim report, it was like a thousand million pages and not one recommendation.  Like, who does that?

 

PROFESSOR SIMON DARCY:  Well, I think we know that it's not just making recommendations, but any organisation that makes recommendations to the Government, the Government can either choose to act or not to act, and we have seen a history of inaction coming out of some absolutely harrowing tales from whether it be the Aged care Royal Commission or now what's coming out of the Disability Royal Commission.  So the integration between the Royal Commission and NDIS ‑ NDIS should learn lessons coming out of the Royal Commission so that those issues are not perpetrated again on people with disability within the NDIS system. 

 

We're coming very close to the end and I've got probably one question to go to from the audience.  Just while I bring that question up, if each of you could just think of one statement that you would like the Minister to hear coming out of today and that's how we will wind the session up.  But I would like to thank a number of people who have put on the discussion list ‑ on the Q&A, "Simpler, fairer, yes, but it's so complicated."  A person has written here that they self‑manage their son.  "What happens when parents die?".  And, of course, that's another hidden part of the NDIS, the literally thousands of hours that are spent by individuals managing for their ‑ whether it's their child or a person that they're assisting with guardianship, et cetera, in a system that is highly complex. 

 

So very good comments with respect to: making it simple has to be for everybody in the system.  Many of us have had problems dealing with the technology that we know wasn't a good system of tech that was put up there in the first place.  It's a terribly complex system.  We had a number of ‑ a lot of people supporting the ideal of co‑design but wondering how it's going to be operationalised and then the whole idea of the need for training of assessors and planners within the system so that they know what the potential of what is ‑ we call it an insurance scheme but it's also an investment scheme in our human potential. 

 

So really good comments and what we'll do is we will summarise those comments and make them available with some communication that we're going to put through to everybody that signed up today.  We have peaked at around 170 and we still have 134 people there.  So before I say my thank yous, could I go to George, El, Fiona and Linda just for a final comment? If

 

DR GEORGE TALEPOROS:  Are we going to answer their question?

 

PROFESSOR SIMON DARCY:  If you want to.  What happens when the parents die, George?

 

DR GEORGE TALEPOROS:  I think what is critical is that you set up a circle of support.  It should never fall to the one person and we know that circles of support have been incredibly helpful for families and there are organisations out there that can help.  This is why we need capacity building support and ILC funding because it's not fair that it falls on to the one parent, so often the mother. 

 

PROFESSOR SIMON DARCY:  Thank you very much.  I was thinking more about my chairing duties and not thinking about the answer.  So circles of support and we will provide some links to some of those resources in the information that is sent out afterwards.  So final messages to the Minister.  El?

 

EL GIBBS:  Stop seeing us as a threat, a problem, a burden and start seeing us as co‑investors in the NDIS with all the tiers, so tiers 1, 2 and 3, and that will give us a pathway to actually make the NDIS work for all of us. 

 

PROFESSOR SIMON DARCY:  Thank you.  George?

 

DR GEORGE TALEPOROS:  Work with us.  We have the expertise, the knowledge, the experience to help the Government to develop policy that is certainly effective and will deliver the outcomes that we need from the NDIS and get people with disability on the board of the NDIA.  This is a major oversight. 

 

PROFESSOR SIMON DARCY:  Excellent.  Thank you very much, George.  Fiona?

 

FIONA GIVEN:  People with disabilities must be included in every step of the way, including decision making regarding the NDIS. 

 

PROFESSOR SIMON DARCY:  Thank you very much.  Linda?

 

DR LINDA STEELE:  Just to listen and work with the disability community, to read the UN Convention on the Rights of Persons With Disabilities to see what the NDIS Act signs up disability services and the NDIA to do.  And also to listen and engage with what's coming out of the Disability Royal Commission. 

 

PROFESSOR SIMON DARCY:  Excellent. 

 

DR GEORGE TALEPOROS:  And we need funding for ILC and that needs to be a real focus moving forward. 

 

PROFESSOR SIMON DARCY:  Remembering that the NDIS only caters for roughly half a million of the 4.3 million people that identify with disability and those other steps of community engagement are so important.  Thank you very much, George.  I would like to thank Fiona, El, Linda and George for their frankness in their insights today.  I would like to thank Verity for hosting and the Centre For Social Justice and Inclusion for supporting our launch of the UTS Disability Research Network.  We're looking forward to hosting other events in the future and we will provide some further messaging coming out of today.  I

 

I would just like to thank the 170‑odd people for turning up and hearing some absolutely terrific speakers not afraid to bring up the significant issues but also wanting to make the system better.  So I hope the Minister hears and I hope the Minister has mechanisms in place to get not just the people that are speaking today but the literally hundreds and thousands of us around the country that want to make the system better and want to work with the Government to achieve those goals both at the Federal and the state level, and with the very important not‑for‑profit sector adding a collective voice.  Thank you.  Thank you very much for today and we look forward to further conversations.