Presentation by Professor Bruce Bonyhady

This presentation is by Professor Bruce Bonyhady, Director – Melbourne Disability Institute.
This speech was given at the AFDO Annual General Meeting (AGM) on 19th October 2020.

The title of the speech is Strengthening the ties between research, data and advocacy to transform lives.

This speech included a Power Point Presentation:

Transcript of speech

BRUCE BONYHADY:  It’s terrific to be here and thank you so much for inviting me to present at your AGM and can I just say how delighted I am to see so many familiar faces on the screen.  It includes a number of people that I haven’t seen for quite some time, including Richard Dent, but a lot of people that I haven’t seen for a while and I guess it’s part of the opportunity to come together in this way virtually, but nevertheless, in a very real way.

I’d like to begin by acknowledging the traditional owners of the lands on which we are all meeting today, recognising that we’re all in different parts of Australia.  In my case it’s the Gunaikurnai people, so I’d like to pay my respects to their Elders past, present and emerging.

So today I’m going to talk about the essential role that I think data and research comply in general but also as a way of supporting advocacy in order to transform the lives of people with disability and their families and carers.  We’ve circulated a presentation, so I’m just going to work my way through that. 

So for those of you who have got the presentation in front of you, I’m now just turning to the second slide.  On this slide what I’ve described are what I think are the big forces that are going to shape the lives of people with disability over the next decade or so.  They’re obviously the National Disability Insurance Scheme and the National Disability Agency, the National Quality and Safeguards Commission, but recognising that those schemes and safeguarding arrangements only apply to a relatively small proportion of people with disability who also have the very central place that’s going to be played by the National Disability Strategy, which obviously, as we all know, is designed to cover all people with disability.

We also have in a pilot phase the development of a National Disability Data Asset and I’m going to talk about that because I think it has a potentially very significant role to play in terms of both linking data and making sure that we address key gaps in the data that is available today.  I’m also going to talk about the National Disability Research Partnership.  This is a partnership that is embryonic in nature and it’s actually being led by the Melbourne Disability Unit.  We’ve been funded by the Australian Government to commence the partnership and make the case really for an ongoing, enduring partnership and with that a major research effort to support better lives for people with disability.

And then of course the other great force that will undoubtedly shape future directions is the Disability Royal Commission.  We’ve already heard from submissions made to that Royal Commission about gaps in the Quality and Safeguards Commission but also very significant steps that need to be taken to make sure that people with disability are included as full citizens and a part of mainstream life.

My argument today is that data and evidence and research and all of these forces that are at play mean that we have the potential to make advocacy much more effective because the data and the research are going to be much more available and so that evidence base that I think you need in order to really shape and change policy and practice is I think potentially going to be available to a much wider group of people.

But in order to harness this potential, in order to realise this potential, we’re going to need I think new skills, new thinking and new collaborations and partnerships built on a shared vision and at MDI we are working as hard as we can to be a key contributor to this new world.

So I’d now like to just turn to the next slide, where I’d like to begin by talking about the National Disability Insurance Scheme.  Much of course has been written about the NDIS, but in this context the thing that is most significant is that it is building the best whole‑of‑population and longitudinal disability database in the world and with the right research, it then becomes a platform on which new policies and new practices can be carefully calibrated and designed.  The data includes information on the NDIS participants not just on the basis of their medical diagnosis, but based on functional impairment.  It includes information on their goals and hence their aspirations.  As we all know, one of the great ambitions for the NDIS was that it was going to enable people with disability to lift their horizons, to lift their aspirations to become full citizens.

There’s information in there on the families that support them and the sustainability of informal supports.  There’s data on funding for core supports, capacity building and assistive technology.  And then of course there’s the information on the actual expenditure, and so how people are exercising control and choice; information on the disability market, including new and innovative providers, tele disability; then information on the services that are available across all parts of Australia, so giving us an idea on market thickness and then to what degree markets are really starting to serve people with disability, which of course was one of the other great aspirations or remains one of the other great aspirations of the NDIS.

Then within the NDIS database there’s information on outcomes across eight key domains:  choice and control; independent living; relationships; health and wellbeing; home; lifelong learning; work; social, community and civic participation.  Plus there are also outcomes being measured for families and carers and those outcomes are also calibrated across different age groups.  So obviously where you’re talking about children, the focus is much more on education than it would be on work.

This data I think, I believe, holds the key to optimising the NDIS so that it delivers on its promise.  What we’ve seen so far is the National Disability Insurance Agency starting to publish information and insights based on that data, but I think the real opportunity will come when that data is much more freely available, so advocacy groups like you ‑ advocates like you and researchers can come together and we can ask our own research questions, our own questions of maximum importance and then get some real insights and then go back to the policy makers, go back to service providers and say, “Look, this is what we now need and this is the data and the evidence and what it’s showing.” 

The second important point for focus for me is on the national Quality and Safeguards Commission and I just want to remind everybody that one of the key aspirations with the introduction of the NDIS would be that there would be a personalised approach to quality and safeguarding.  Unfortunately, we haven’t seen that to date.  The focus has all been on what I would describe as preventive safeguards and when you look at the Ann Marie Smith case and other things that have emerged, they have not been particularly effective.

We also have, as the other two elements in this safeguarding system, developmental safeguards and corrective safeguards.  Corrective safeguards have also not been actioned as much as you might have expected, but to my mind the really great missing link is developmental safeguards.  So that’s the work we do with individuals so that they’re better able to support and protect themselves and one of the gaps I think is that we haven’t made the link between those developmental safeguards and capacity building. 

But more generally there just hasn’t been an emphasis on developmental safeguards and the reason why I think this is such an important area and one which needs to be corrected soon is because building people’s capacity to protect themselves is actually the best way of protecting vulnerable people.  Now, that’s not going to work in all cases, which is why you also need preventive safeguards and corrective safeguards, but it starts with developmental safeguards.  So I think we need that and we need to see from the data whether or not that is being achieved or not.

The second thing that we need ‑ and again, this is data driven ‑ is a regulator who interrogates the data that they’re receiving on incidents and other information which shines a light on the quality of services that people with disability are receiving and whether there are adequate safeguards in place.  Before the NDIS was established, the New South Wales Ombudsman was developing an outstanding capability in data analysis and was really making great steps forward in terms of improving quality and improving safeguarding and we need to get back to that.  We need to make sure that the national Quality and Safeguards Commission is not just getting data, but is then analysing that data in order to identify not just actual cases of abuse, but potential cases of abuse and acting in a proactive way using its own motion powers and other powers in order to be an effective regulator.

The third area I want to talk about is the National Disability Strategy on page 5.  As we know, we’ve had a National Disability Strategy since 2010.  The first strategy I think was an outstanding document in terms of its aspirations, with its six key nominated areas of inclusive and accessible communities; rights, protection, justice and legislation; economic security; personal and community support; learning and skills; and health and wellbeing.  But where that strategy failed was in terms of having clear outcomes against each of these nominated areas, a clear accountability framework, and a clear designation of responsibilities in order to ensure that the goals and outcomes were achieved.

Now, as we’re on the cusp of having our second National Disability Strategy, we need to make sure that those accountability mechanisms are in place and then, as part of that, we need to make sure that we can all get access to the data and undertake research in order to hold governments to account to ensure that the National Disability Strategy is not just an attractive looking document, but is actually a living document that is improving lives for people with disability and their families and carers.

The next part of this jigsaw of big forces affecting the lives of people with disability in Australia now and in the next decade is potentially the National Disability Data Asset, which is described on the next couple of slides.  The National Disability Data Asset is now linking all of the data that’s available on people with disabilities, so it’s bringing together NDIS data with tax data, with social security data, with employment data, with housing data, justice data, and with health and medical records and pharmaceutical benefit records to provide a truly comprehensive picture of what it’s like to be a person with a disability in Australia today.  The data that’s being assembled is administrative data that’s coming from Commonwealth and State Governments and so what it’s going to provide is a platform on which research and other advocacy can be built.

At this stage, if you go to the next slide, we’re about six months into a pilot phase which is due to be completed at the end of next year.  The pilot phase is focusing on bringing data in, linking the data, cleaning the data, integrating the data, and then undertaking some preliminary analysis and a sharing of insights. 

There are five demonstration projects that are being undertaken as part of this establishment or pilot phase for the National Disability Data Asset and they include looking at outcomes that might be measured as part of the National Disability Strategy, looking at the transition from education to employment with a view to improving employment outcomes for people with disability.  There will be a project on mental health and there will be another one on the workforce.  And the idea of these test cases is to prove the value of this National Disability Data Asset so that governments provide the funding in an ongoing way for that asset to continue to be available as the platform for research.

If you haven’t engaged with the implementation of the National Disability Data Asset, I’d certainly encourage you to do so.  It’s being auspiced by the Australian Digital Council and also by disability ministers.

The next issue I’d just like to touch on ‑ and now I’m on slide 8 ‑ is the National Disability Research Partnership.  The NDRP aims to create a collaborative, translational research program to conduct cutting‑edge research that will improve policies and practices, ultimately enabling people with disability across Australia to participate fully in society.  When you look at the current standing of disability research in Australia ‑ and this is reflected in two audits that were undertaken in 2014 and 2017 ‑ what you find is that the research effort is fragmented and in fact poorly resourced.  This is hardly surprising given that prior to the introduction of the NDIS there was little money or insufficient money to actually support people with disabilities, so the fact that there hasn’t been enough money or funding for disability research is simply a by‑product of the fact that there was insufficient funding. 

But now that governments are investing about 1% of GDP in the NDIS, it makes enormous sense to invest in research and in fact if you look at accident compensation schemes, on which the NDIS is ultimately based, one of the things that those schemes do is they invest in research in a major way.  They invest in data and they invest in research.  We don’t yet have that investment in research or a commitment to that investment in research as yet and that’s why this NDRP is potentially of such great importance.

The initial funding for NDRP has come to the Melbourne Disability Institute and we’ve in fact been provided with $2.5 million for use over the next two years.  In that period, we’ve been asked to undertake a number of foundational activities.  The first is to produce a research agenda for the next 10 years that focuses on research for evidence‑informed policy and practice.  So the focus is very much on research that’s going to improve people’s lives rather than very theoretical research and it’s about developing a 10‑year agenda so that we can be clear about what research needs to be undertaken so that the sorts of aspirations we’ve got for people with disability can be achieved.

The second element that we’ve been asked to deliver is a future governance model for NDRP.  At the moment the governance is essentially a grant mechanism and an agreement between us and the Department of Social Services, but we’re looking to build an inclusive governance model for the future of NDRP.  We’ve actually taken some steps in that direction already by bringing together a working party which consists of people with disability plus academics, but there needs to be a proper governance model or a fuller governance model, let me say, if governments commit to the NDRP on an ongoing basis.

The third thing we’ve been asked to do is to map relevant research capability because I think along with the fact that the research has been fragmented has been insufficient capacity to actually undertake research.  We obviously have a number of leading researchers, but when we look at the ranks below those leading researchers, it’s just not at the level and depth that you really need to be commensurate with the sort of investment that governments are making in disability.

The fourth thing we’re going to do is produce a practical guide to disability‑inclusive research.  It’s something we’re deeply committed to.  It’s reflected in the governance arrangements we’ve put in place so that people with disability very much have a voice in those governance arrangements, and then we’re going to undertake two demonstration projects in order to show the benefits of bringing together researchers from around Australia to tackle some key policy imperatives.

Then the final thing we’re going to do, or in the process of doing, is identifying developing some international research collaborations and establishing some key connections.  The first step of all of this, if I go to the next slide, is developing the NDRP research agenda.  We issued or initiated a tender process for the NDRP research agenda a couple of months ago.  We had a very large number of proposals put to us.  We’ve now undertaken a shortlisting process and our expectation is that we’ll be able to announce the successful bidder very shortly. 

But when you find out who’s been successful, I think you’ll be impressed by two things.  One is the large number of universities and research institutes that are going to be directly engaged in developing the research agenda with us, and with that their breadth of experience across all aspects of disability and so bringing a whole lot of information into the research agenda process. 

But the other part of it which I think you’ll find, I hope you’ll find, impressive is just the range of disability organisations, advocacy groups that are going to be directly engaged in developing that research agenda.  So this is going to be about people with disability and their families and carers working with researchers in order to identify the issues that are of greatest importance to them in order to set a 10‑year research agenda.  And then of course if we can persuade governments to fund this in an ongoing way, then we’re going to have the capacity to fill those gaps and to really make a difference.

I’d now like to just turn for a moment just to talk about the Melbourne Disability Institute and I guess the formation of the Melbourne Disability Institute owes very much to the themes that I’ve been talking about today because when I finished ‑ completed my term as Chair of the NDIA, I actually approached Melbourne University and said, “Look, the NDIS is building the best database on disability anywhere in the world, this is an extraordinary platform for research and would you be prepared to invest in disability research”, which is what they’ve done through the establishment of the Melbourne Disability Institute. 

Our vision is to transform the social and economic wellbeing and health of people with disability through high‑quality research, teaching and training and knowledge translation.  If you can see some similarities between what we’re trying to do with MDI and what the mission for the NDRP is, it’s no coincidence because we’ve been so heavily involved in the whole conceptualisation of the NDRP.  In fact, the concept was developed by Professor Anne Kavanagh and I as part of a submission to the medical research future fund.  They didn’t fund it because it wasn’t sufficiently medical research oriented, but fortunately the Commonwealth Government, through the Department of Social Services, decided to pick up and run with this idea.

We’re committed to work in partnership with key stakeholders and we want to act as a catalyst for interdisciplinary research across the university, so we’re trying to break down the silos, trying to get different parts of the university, different researchers to work together and all with the idea that this research then gets translated into policy and practice.

Our particular areas of interest are opportunity and equity, so this idea that people with disability should have the same opportunities as all other Australians and be treated equitably, that our community should be inclusive, so mainstream services should embrace people with disabilities as part of the services they provide, the health and wellbeing of people with disabilities, and using those terms in the broadest sense, so not just focused on the medical side of that, but the overall sense of wellbeing of people with disability. 

We’ve got another focus on markets and sustainability, recognising that with the NDIS people with disabilities do have control and choice, but actually getting markets to serve people with disability is a complex affair and, as we know with the NDIS so far, some people are finding having control and choice a real bonus.  They’re able to get out and find the services they need.  But if you’re Indigenous or from a culturally and linguistically diverse background or you have a psychosocial disability or you don’t have family to support you, or you’re living in some of the more rural and remote parts of Australia, there are all sorts of implementation issues with the NDIS and we need to get that right.  So we need to make sure that the markets work, but also that the NDIS is sustainable.  Then we want to translate all of this research into policy and practice.

We have had, since the inception of MDI, a real focus on data, on interdisciplinary research, on co‑production so that people with disabilities are part of our research, help frame the research questions, and we actually have a co‑researcher program that we’re currently in the process of finalising.

Then all of this cannot be done without partnerships.  So if I could just turn to our priorities on the next slide, which I think seems to have missed a number, slide 11.  So data, as I said, has been a focus for us from the beginning.  We actually established what we call the Democratising Disability Data Coalition because we recognised that ‑ because at that stage the NDIS was not making its data available.  In many ways it’s still not available.  It needs to become much more available for research.  And we’re now working with both the Australian Digital Council and the new National Disability Data Asset.  I’m in fact on their advisory council, so I’m quite involved in what they’re doing.

As I’ve mentioned, we’re putting a huge effort into the National Disability Research Partnership.  It’s a once in a lifetime opportunity to secure large‑scale funding for disability research.  We’re doing quite a lot of work on NDIS plan utilisation for both the Commonwealth and Victorian Governments.  As everyone would know, when we started the scheme we thought that utilisation would be something like 95%.  It’s never got much above 70%.  But what are the factors and how significant are they in driving that outcome and what can be done in order to assist people to get the services they need is the focus of the research we’re doing.

I’ve mentioned co‑design and co‑researchers.  We also have partnerships with the Brotherhood of St Laurence and Baptcare looking to advance the role of local area coordination.  We’re establishing a number of research hubs across the university and we’re also doing some work internationally. 

Before COVID hit, the Government of India was particularly interested in us doing some modelling on an NDIS for India.  Obviously it would need to be structured to reflect what would be reasonable and necessary in India, but just the idea that you might have a needs‑based scheme to disability in a country which today only recognises 2% of their population as having a disability would be just quite an extraordinary thing to be involved in.  So we’re working with the Department of Empowerment of Persons with Disability in the central government as part of that. 

We’re also doing some work in Canada in collaboration with Every Canadian Counts and in Cambodia there’s an interest in extending social protection to include sort of NDIS‑type features, and remembering Cambodia is a country where there are a huge number of people with disabilities because of the land mines that were left at the end of the Pol Pot regime, so again an extraordinary thing to be involved in.

One of the other programs that we’re involved in if you go to slide 12 is our community‑based research program.  Now, under this program we bring community organisations together with researchers.  The community organisations bring us their programs, the things they’re working on, and we then partner them up with researchers so that they can actually build ‑ either improve the programs that they’ve got, improve the policy recommendations that they’re developing, or to scale up what they’re doing.

We’ve had about 10 organisations involved in that program so far and last week in fact five of those organisations presented at a showcase that we ran, and there’s a link to the website with the program where you can have a look at what was talked about on our showcase. 

But some of the stories were just extraordinary and it just goes to show how a little bit of data and a little bit of research together with great drive and creativity and initiative at the community level can really be quite transformational.  So one of the cases that was reported was some work with Maroondah Council to develop a program for carers, so carers could connect, and based on the research that we’ve done, that program is now going to be rolled out right across Victoria.

We’ve just in fact opened a second round in which organisations can apply and the link is on that page.  So if you’ve got a program that you’re passionate about, a policy reform that you’re passionate about, but are looking for some additional research to support it and make a stronger case to government, then please have a look at that program and put in an application because we’d love to hear from you.

So I’d just like to conclude by coming back to some of the aspiration that was there when the NDIS was introduced and I believe is still there and that is that Australia can have the best disability system in the world, but for that to happen, we’re going to now need to really use data and evidence systematically in order to drive best practice and policy.  We’ve had the period where the focus was bringing everybody into the NDIS and now the focus needs to shift to quality and better outcomes.

This research can’t be done without people with disability at the very centre of that research helping to frame the research questions, helping to undertake the research, and at MDI we’re just deeply committed to being part of that sort of process where through the combination of data and research and people with disability, we really act together to transform the lives of people with disability, their families and carers. 

There’s never been a better time for this sort of research to be undertaken.  There’s never been the potential data that we’re now on the cusp of having in linked form.  There’s never been the sort of potential funding that could now be available for research, and what we need to do is to bring it together and if we do do that, I’m very confident that we can really transform people’s lives and, in the process, make Australia a much more inclusive and better society.

So thank you very much for listening.  It’s been great to present to you and certainly if there are questions, I’m happy to engage in questions and discussion with you.

ROSS JOYCE:  Thanks, Bruce, really appreciated your presentation.  Yes, look, I think it is a dramatically changing space and we are on the cusp of some really good outcomes over the next few years coming ‑ believe it or not from data.  But as with a lot of sectors the disability sector isn’t the only one that has had poor data.  I can reflect from community services ‑ I can reflect from primary healthcare, you know, and to a large extent that’s still the case in those areas as well, so I think this is really cutting‑edge stuff.  I’m certainly really buoyed by the opportunities that that creates.

I suppose, Bruce, one of the questions I had was just what do you see the role of the advocacy agencies in terms of what’s happening in this space? 

BRUCE BONYHADY:  Look, I see it as critical and so one of the things that we’re building into our sort of work around the National Disability Research Partnership is a recognition that advocacy organisations are poor in terms of funding.  What you have is great connections, great knowledge, but actually having the time to get engaged in research is expensive.  So one of the things we’re very committed to is recognising the in‑kind nature ‑ in‑kind contributions that advocacy organisations would bring to research and that they need to be paid for bringing that information into the research program.  It’s as valuable as the funding and other things that other partners bring.

So it’s not just about the central role of advocacy organisations, but it’s also about giving them the capacity to engage.

ROSS JOYCE:  Thanks, Bruce.  I throw it open for other questions from the floor, please.

PARTICIPANT #1  Just a couple of questions about your presentation, in particular the National Disability Data Asset.  I can see the value of it and I think it will be a real asset to the advocacy sector, as you say, to collect that data and use it to advocate both systemically and sometimes at the individual level for particular clients with different types of disability.  How will this National Disability Data Asset deal with the different definitions of disability that are around all over Australia?  I mean, the National Disability Advocacy Program has a definition of disability which is different to and different from the DDA and then you have the Disability Services Act 1986 has a different definition of disability.  Then you’ve got Centrelink for the Disability Support Pension.  It links it to impairment tables and job readiness, and so on.  So you’ve got all these different programs that the Federal Government has around the country, and State Governments for that matter, that they fund disability according to their own definition of it.

Now, how do you pull all that together to come up with some meaningful data about just what the country thinks about disability?  Even the census basically collects information about what you need help to do, you know, the medical model rather than the social model.  So how do we get all that stuff together in a way that makes sense, because you have some people who qualify under the Disability Discrimination Act to lodge a complaint, but then they don’t qualify for Centrelink because their disability isn’t defined that way.  So how does all that work? 

The other thing I want to ask you about is what’s your view about the independent assessors that the NDIS is going to introduce and what effect will those independent assessors have on the quality of the data that we’re going to collect when they make their decisions?

BRUCE BONYHADY:  Two terrific questions.  So just in relation to the first question, you point out very correctly that the definitions of disability in the different data sets are different and if I go, for example, to hospital admission data, they, for example, often don’t collect data on disability or, if they do, they do it in a very inconsistent way because it really depends on who was doing the admission at the time the person presented at the hospital.

So the way the data asset will deal with that is by having what is known as a population spine.  So the data will be able to be linked what’s called deterministically, so exactly, you’re going to be able to exactly identify Peter Smith in this data set with Peter Smith in another data set and the way that’s going to be done is by using the Medicare number.  So the Medicare number is going to define the whole population and then within that you’ll then be able to identify whether individuals are receiving Centrelink benefits or whether they’re receiving the NDIS or exactly how often they’ve been to the hospital and what medical services they might have used.

Now, the great advantage of that is that you will then be able to define disability as you want to for the purposes of your study.  So if you’re interested in a broad definition of disability sort of beyond ‑ in many cases beyond what’s in the NDIS, you’ll be able to use whatever definition is in any of those data sets because they’re linked, you’ll be able to use that as your definition of disability. 

So it really is a case of as a researcher or as an advocate you can say look, this is the population we’re interested in, we’re interested ‑ we’re not just interested in people who are getting the Disability Support Pension, we’re also interested in people who’ve got disability support pension, but also there will be some people in the NDIS who don’t get the Disability Support Pension that I want to include.  By combining the data sets and linking the data sets, you’ll be able to cover all of those groups in that way.

But it will be reliant on there being a definition of disability ‑ it will either be you can choose a particular definition of disability that’s in the database or by combining different types and then making sure that you’ve dealt with the overlap.

In relation to your second question on independent assessment, I think it’s probably worth just spending a moment talking about sort of the origins of this idea and its potential obvious significance.  So with accident compensation schemes ‑ you know, Transport Accident Commission and these sorts of schemes ‑ they’ve been around for 50 years and we now have enough data to know that ‑ and they only cover three types of injury ‑ acquired brain injury, spinal cord injury and catastrophic burns ‑ and we now have enough data, though, on those types of injuries to know that if someone is injured, what the level of compensation needs to be in order to meet their needs.

So there’s always been an aspiration that this sort of data would become available through the NDIS and in fact it was one of the reasons why we had to start the scheme before ‑ we had to start the scheme in order to collect enough data in order to then try to get a much more objective way of measuring people’s support needs.

So that’s been the aspiration from the very beginning.  It was in the Productivity Commission report in 2011.  But going from the aspiration to actually delivering this effectively is a huge task and it’s huge for the following reasons.  First of all, we’re not talking about three types of disability.  We’re talking about every type of disability and within that a whole range of very different outcomes and some of those disability types, autism ‑ I notice Bob is on the call ‑ they’re recognised as being on a spectrum anyway.  So it’s not like they’re a single type within the category say of autism.  So there is just a huge range of functional impairments that need to be covered.  There is a huge ‑ so that’s sort of one set of issues.

The second set of issues is that there is no single measure of functional assessment that will cover all disability types and that’s evident from the information that the NDIA has published, but the critical question is how will those different functional assessments be brought together systematically in a way that is consistent and accurate and fair? 

And then the other set of issues is that the NDIS does not just provide supports based on functional assessment.  It takes account of goals and it takes account of sustainable informal supports.  So all of that needs to be combined in a really systematic way in order for independent functional assessment to work.

When we talk about independent functional assessment, I think the focus is on the fact that when we talk about independent, the person doing the assessment did not know the person they’re assessing prior to the assessment process beginning, but then that also raises enormous questions about how in a very short period of time someone can make the judgments that are necessary in order to provide reasonable and necessary supports.

There are also questions about how do we ensure that the training that those people receive ensures that there’s high fidelity with the actual instrument so that it’s operationalised well.  You know, if you think about early childhood intervention, we’ve always said that the best approach is to have interdisciplinary teams seeing the person in multiple settings.  So there are also I think very significant implementation issues as well. 

So you bring that all together and I think the aspiration that we have accurate, reliable, timely, fair assessment of people’s needs is absolutely the goal we need to have, but in order to get there, I think we’re going to have to use the data and build the evidence base much more thoroughly in order to be confident that what we’re going to get is going to be better than the current system which I think all of us would acknowledge is not equitable, not fair, and as I said earlier, if you’re from a culturally and linguistically diverse background, if you’ve got a psychosocial disability, you’re Indigenous, this is a very difficult scheme to navigate.  It’s not fair for those people.  So we need to make sure that it is fair and the key to it, in my view, is better data and better research and a transparency around the process that leads us to the sorts of conclusions that are going to be needed.

PARTICIPANT #1:  Bruce, in a perfect world that would be great, but the NDIS has a very poor track record in terms of customer service and consistency of its decision making and it even goes to the extent where it settles cases before they get to an AAT hearing to avoid setting precedents.  So I’m not as confident as you are that these individual assessments are not going to chuck people out of the scheme that would normally be entitled to simply because they might not have the knowledge, skills or understanding to be able to appeal it properly. 

The other thing is that not all the government services that collect data around disability, both state and federal, collect Medicare information.  We don’t.  We’re not obliged to collect that for our clients for advocacy.  It’s got nothing to do with their advocacy.  So there’s going to be a lot of data you miss if you rely just on the Medicare. 

BRUCE BONYHADY:  It’s an interesting ‑ that’s an interesting point to think about, yeah.  There may well be other identifiers in there, such as NDIS participant or Centrelink numbers or something like that which might make up for it. 

But just coming back to your point about independent assessment, I think ‑ my point is there’s still a lot of water to flow under that bridge.  We’ve had an AAT case which rejected independent assessment.  So I think as people are deeply committed to ensuring that the NDIS delivers as promised, there’s a big opportunity for us to work together to make sure that this is not sort of down a wrong track, which it could well be.

PARTICIPANT #2:  I was actually in a meeting on Friday about the National Disability Data Asset the other day.  I’ve actually built two systems like this before in my career.  Any time people want to talk to me about solving all of the problems you’ve raised and some that you clearly haven’t solved yet, I’m open for that discussion and I’m not going to charge anybody for doing it either.  And there’s some big serious problems.

But the big question that I have for you is I’m very data driven in my advocacy and I probably have better data than most people are even going to get out of the National Disability Data Asset and what I can tell you is I don’t have the faith that you have in when we get the data, we’ll be able to do better advocacy. 

My experience is no matter how good your data is in our current political climate the data is utterly irrelevant if it doesn’t confirm the politicians’ existing beliefs and prejudices.  Data is useless if it doesn’t support what they want to believe already and that’s a really, really big problem.  I don’t know how you’re going to solve that one, but we can certainly see that in a whole bunch of areas there’s a lot of truth in that and you can just think about climate change for starters.  So I’d like to know about that.

The other thing I’d like to point out is I wrote a letter to the Prime Minister this morning about the independent assessment that explains precisely why the independent assessments as they’re currently conducted are not going to work.  In the space of autism, you don’t have a lifetime to ask enough questions in the assessment tool to actually come to the answers and that’s because people don’t actually understand the issues that need to be solved here and most of the issues, or a lot of the issues, are not around functional assessments, they’re about things like ‑ the biggest question that you need to ask in terms of getting equitable funding for people with disabilities is how long are your parents going to support you?  That’s the biggest question.  And how well can they support you?  And is that really how you want it to work?  That’s not going to come out in a functional assessment.  Nobody is asking that question in the functional assessment.

We saw another report come out on Friday from carers that said replacing carers is $78 billion in the Australian economy.  That’s more than three times the NDIS.  So those questions are not even being addressed and thought about.  So that’s my comment on this.

BRUCE BONYHADY:  Yes, look, thanks, Bob.  Look, I’ll mention to some people that you’ve got quite a lot of ‑ got experience in this area and your offer to assist.  I think the point you make about the role of family and carers I agree is absolutely critical to all of this.  When I referred to the sustainability of informal supports, that’s really what I was referring to. 

Accident compensation schemes and the NDIS are fundamentally different in that in accident compensation schemes you simply are looking to measure the functional loss and then try to provide people with compensation to get themselves back to where they would have been in the absence of the injury because that reflects the tort law on which they’re based, whereas in the NDIS it’s always been about a combination of family support and paid supports and therapies and the other things that the NDIS provides.  So unless you take that into account in terms of determining funding, they’re going to miss a huge issue. 

So I agree with you that not once in those documents, or not in any significant way, do they talk about goals or about family and family support.  So how that gets put into all of this mix is unclear and until it’s clear, then I think we’ve got a real issue with what’s being proposed.

PARTICIPANT #2:  I thought I might put a quick comment about the data.  The NDIS is a big problem about data.  Autism has actually turned out to be a bigger problem for the NDIS than they ever anticipated.  We’re over 30% when they expected it to be 20%.  Their response to this has been really interesting.  The NDIS has gone into Senate Estimates and said we still expect we’re going to get autism down to 20% of participants.  That means that they’re planning to kick 1 in 3 autistic people out of the NDIS and already they’re well below having most of the people with severe and profound disability in the NDIS.  They’re not even there.

Then they’re saying it’s all unsustainable, but I was speaking to their expert the other day on the numbers, right, and they’re saying autism is unsustainable.  I said, “So what do you think the average cost of an autistic participant is?”  And he said, “I don’t know.”  I thought the NDIS’s expert on autism doesn’t know what the average cost of an autistic participant is. 

We do know these numbers because they’ve been published and it happens to be the average for autism is $40,000 a year.  The average cost of a plan altogether is $70,000 a year, so if you actually take the autism ones out, the average cost for a non‑autistic participant is $84,000 and they’re running around saying ‑ this is how bad they are at using data and how uninformed it is and it doesn’t matter how good your data is because this is the way they use it.  They’re saying that autism is unsustainable.

The more autism you have, you’re costing less than half the average cost of somebody who doesn’t have autism and yet they’re saying it’s unsustainable.  It doesn’t make any sense whatsoever.  You look at this and you go none of this is credible.  So if this is what’s going on, how is having any more data going to make it any better?

BRUCE BONYHADY:  Well, I think the response, Bob, is that I think there is a huge difference between the NDIA having the data and then doing their own analysis and publishing the results and making that data available more broadly.  So if you’re going to democratise the data, you would say look, let everybody be able to analyse this data, be able to interpret it, and then we can debate what the data really says because at the moment the NDIA has the data and they’re telling us what it means and I’m keen to get the data to see what it really does mean.  So I’m with you on that one.

PARTICIPANT #3  I want to acknowledge the large number of people with disability in Australia who are not eligible for the NDIS and I guess just ask whether the data that you gather will highlight kind of two major discrepancies.  One is what’s available for those inside and outside the NDIS and the other is to what extent needs are being met for people who are older with and without disability.

BRUCE BONYHADY:  Yes.  So I’m very hopeful that we will get some insights into not just what’s happening to people who are outside the NDIS but those people who, if you like, are close to eligibility because I think one of the ‑ the discussion we’re having about independent assessment is really to a large degree a question around equity within the scheme.  You know, the agency’s pointed out that people who come from more well‑to‑do post codes are doing better than people coming from poorer parts and less advantaged parts of Australia.

But the other and in many ways I think the bigger equity issue is between those who are in the scheme and those that are out.  It was always intended that there would be sort of a smooth ‑ what I call a smooth slope at the edge of the scheme so the first person who missed out didn’t get a lot less than the first person who went in and what we’re seeing the people who are in get thousands of dollars and if you’re out you basically get nothing. 

If you look at the ILC funding and average it across non‑NDIS participants, it’s about $40 a head.  So there is just a huge equity issue there.  I think the risk is that people who may have initially not been eligible for the scheme then find that their conditions deteriorate because they haven’t got the support they need and so they end up in the scheme costing more.

The other risk is that people who might miss out, notwithstanding independent functional assessment, you know, find ways of exaggerating what their needs are in order to get in.  The agency then starts to get worried about numbers, so they then make the processes even more onerous than they are at the moment. 

So I think we have a huge issue with the lack of support for people not in the NDIS and that needs to be ‑ in the absence of dealing with that, there will be unstoppable pressures on the NDIS.  It doesn’t matter whether you’ve got independent functional assessment, but what you’ve got, people will find ways of getting in. 

PARTICIPANT #3:  Unless they’re over 65.

BRUCE BONYHADY:  I haven’t got ‑ sorry, there’s also the over 65 issue as well.  I’ve always thought that people with polio had a particularly ‑ you know, they were in a particularly difficult position or unfortunate position because if the scheme had existed when they were children, they would have been in.  They would have then had many years where they didn’t need support and then as they aged, they would then need support.  And, yes, I think they’re in a particularly weak ‑ you know, unfair position compared with many others, you know?  Because they did have a disability, you know, that was the reality of it when they were kids but there was no NDIS at that point.

PARTICIPANT #4:  Thank you, Bruce, for your presentation.  My first question is firstly can we share your presentation?  I’d love to put it out to the board members of Down Syndrome Australia and our members.

BRUCE BONYHADY:  Yes, of course.  I’ve sent it to Helen, so by all means it’s available to everybody, yes. 

PARTICIPANT #4  Excellent.  The second one is going back to the NDA, you mentioned there that services that are government funded you will collect data and obviously Medicare numbers, et cetera, will apply, but particularly with NDIS packages and particularly those that are self‑managed, there’s a number of services being purchased for individuals that are going to extended family networks or social networks, can’t go to family members, or to other service providers who are operating under an ABN and stood themselves up to provide a service where there is a lack in the community to provide that.

BRUCE BONYHADY:  Yes.  It would be good if some better data were ‑ well, any data were being collected on that.  I mean, I self‑manage the packages for my sons.  We’re using non‑registered providers because they’ve got ‑ yes, they’ve just got skills that we’ve been looking for, and it would be great if the NDIA got to a point where they could start to capture some of that information because I think there’s some great lessons, some great stories in how people are using their packages innovatively with mainstream services or with people who have just got a particular expertise that you want that would be incredibly ‑ start to build an evidence base information that would then form other people’s choice, which we’re just not getting at the moment.

PARTICIPANT #4  Thanks.  I’m conscious we have only a couple of minutes left.  Bruce, that was absolutely fantastic and I love research and I love data and I love the rich learnings that you can take to inform policies for the future. 

The one thing I was thinking of when you were getting to your last link in regards to research, the one thing that would be really amazing for AFDO and our members would be around the value of disability‑specific communities ‑ you know, in terms of equity and parity and that we don’t get lost.  Any ideas how we could do that? 

BRUCE BONYHADY:  So when you say disability‑specific communities, are you thinking about sort of the deaf community, these communities, so that ‑‑

PARTICIPANT #4  Physical Disability Australia, Down Syndrome ‑ you know, like specific communities because we’re constantly in a bind of finding funny ‑ it is funny, finding money for the existence for our members.  I know within PDA we’ve got over 1,000 members and operate on the smell of an oily rag and having the same compliance measures as other organisations that are getting lots of dollars.

BRUCE BONYHADY:  Yes, I feel one of the things that is really missing here is the recognition of the importance of advocacy in its own right, you know, that ‑ I think there’s this almost idealistic assumption that because we’ve got a National Disability Strategy, because we’ve got the NDIS, because we’ve signed the UN Convention, we actually don’t need advocacy, and it could not be further from the truth.

One of the other groups that I think desperately needs advocacy is the national Quality and Safeguards Commission because you’re the eyes and the ears.  You’ve got links that they will never have.  You’re trusted.  So how we make the case for a stronger advocacy voice, you know, I think is one of the challenges that we have.  It would actually be an interesting exercise to say how do we now use data and research to prove the value of advocacy.

PARTICIPANT #4  Absolutely.  I think that’s what I’m getting at, advocacy, too important to lose.

BRUCE BONYHADY:  Yeah, and sort of think about it in its different bits ‑ you know, the individual advocacy, family advocacy, systemic advocacy, just break it down and then say right, what’s the data, what’s the research that’s going to make the case. 

I take Bob’s point that governments, you know, don’t always want to hear from ‑ it’s an example of something that governments don’t want to hear, but it’s actually in governments’ interests to have that there because issues that have all the potential to become major problems can be identified early by good‑quality advocacy.  So yes, it would be a good thing to work on.

PARTICIPANT #4  I’ve got just one last comment or question about the Convention on the Rights of People With Disabilities, the National Disability Strategy beyond 2020.  Is there any thinking about the 2030 agenda for sustainable development as part of a picture and the 17 goals? 

BRUCE BONYHADY:  Look, I’m sure linking all of this to sustainable development goals is pretty important, very important in fact, and it’s something that we need to do, yes.  Good point.  Yes.

END OF PRESENTATION