DCA - Disability Care Panel
MAURICE CORCORAN:
Okay, look, I think we’ll make a start, so that... We’ve got a lot to get through in this session.
So, it’s with great pleasure that I hand, I’m going to hand over to Dougie Herd from
DisabilityCare Australia to chair our next panel session on the design and construction of
DisabilityCare Australia.
Dougie will be joined by panellist Doctor Nick Hartland, Mr John Walsh, who’s on his way
from the airport, so he, he’ll be here any minute now, so if you see someone else coming up
on to the stage, that’s John, and Kirsten Deane. Doctor Hartland is group manager with the
Department of Families, Housing, Community Services and Indigenous Affairs, and has been
responsible for the policy development for the scheme. Doctor Hartland's team also led the
work on the legislation for DisabilityCare Australia.
John Walsh was appointed to the Productivity Commission in 2010 to investigate the
feasibility of the National Disability Insurance Scheme and other options to fund lifetime care
and support for people with disability. And as we all know, that report was a major stepping
stone to where we are today.
Kirsten Deane is the deputy chair of the National People with Disabilities and Carer Council,
and a member of the, an expert advisory group on the national approach to choice and
control. Until recently, she was deputy campaign director of the Every Australian Counts
campaign.
So, if you could all make a warm welcome and I’ll hand over to Dougie for this discussion.
(Applause)
DOUGIE HERD:
Good morning, everybody. My name is Dougie Herd. It is my enormous good fortune to be a
member of the management team of DisabilityCare Australia. If I could make just a personal
observation that for someone like me, with my background, which some of you know and the
rest don’t need to bother because it’s not that interesting, to be perfectly frank, there is no
better, no more exciting, no more fulfilling place to be right now as someone with a long term
interest in developing individual support arrangements for people with a disability than to be
based in the nation's capital as a member of the staff team of DisabilityCare Australia,
working with a bunch of colleagues who, it would appear to me, as I arrive at 7:30 AM and
leave at 9:30 PM, and I’m never the first person or last person to leave, know no bounds of
commitment to this realise this big project of ours. And I’d just like to note, in public, that it
has been a great privilege to be part of that team, to be part of that project, and to be here
today with all of you.
But having said that, we’ll move quickly on to the real reason we’re here at this session. My
job is to facilitate, which when I looked at the diary, or the dictionary, sorry, said was to
make things happen and to enable. But, of course, those of us who are here in the room know
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that others, including some of the panel members here, have been the enablers, the facilitators
of DisabilityCare Australia, the National Disability Insurance Scheme, for some years now.
And we thought it would be really useful, helpful, to pause for a minute in this two-day
conference to look at, in terms of the build, the design, the construction of the scheme, what it
might have taken to get us here. And then to ask some questions about where our panel
members think we are now and might end up in the not too distant future.
So, the structure of the session is fairly straightforward. I’ll ask each of our participant panel
members to make a brief introductory set of remarks. We’ll ask some questions from here
and then we’ll open it up to conversation and questions from the floor. So if you’ve got any
burning questions to ask any of the architects of the scheme, then now is an opportunity to do
that. And we are hoping that John will arrive here any minute now. Delayed, as you know,
because of the really bad weather, I think, in Sydney that has delayed some flights. But he
will be here to make his contribution.
I’d like to start by asking Kirsten to say a few words from her perspective, not least as a
leading member of the team that brought to us the Every Australian Counts campaign, of
which I am utterly sure most of us in this room are already members and have been
supporting since it was initiated. We thought it would be a useful place to start this discussion
by looking at the perspective of and the contribution from that campaigning initiative, coming
out of the mixed, diverse communities that we call the disability sector.
And therefore, I’d like to ask Kirsten to kick us off.
(Applause)
KIRSTEN DEANE:
Thank you. Look, I think the question of how the NDIS went from being a good idea to
actual reality is actually more than historic question or an academic question. There’s a
number of very well-respected commentators, political economic commentators, who’ve
been saying for the last couple of years that large scale policy reform, economic or social
policy reform, in Australia is dead. The days of it are gone. And their argument is that the
Australian electorate, and therefore our elected representatives, no longer have the stomach
for that kind of reform. Well, the NDIS is the social and economic reform that proves them
wrong. And if you think, if you’re a person like me, who thinks the job’s not done when it
comes to disability, then the question of how the campaign worked and why is it a success is
of more than passing interest.
From the perspective of the people who worked on the Every Australian Counts campaign,
there are probably a number of reasons why we think the campaign was successful. The first
is the most obvious reason, because the NDIS is a good idea. It’s not only the right thing to
do, it’s also the fiscally responsible thing to do. And so, it’s one of those moments where both
human rights and fiscal responsibility meet. It is a good idea but Canberra is littered with
good ideas. Some not so good ones, but...
But what needs to happen in Canberra is there needs to be someone to bring those ideas to
life. And in this particular case, it was the disability sector who took the conscious decision to
be the ones to bring the good idea to life. Now, disability has always had the power of
numbers in Australia, particularly when you compare it to other interest groups. But the
sector has never been organised before. And so, when people got together, they made a
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conscious decision to put past differences aside, to be unified, and to organised.
And the campaign knew that it couldn’t compete in terms of resources. There are other
interest groups in the Australian community who have much, much deeper pockets. But we
knew what we had in the sector was passionate people. And so, what the campaign had to do
was draw on that, that passion. And so, the campaign was successful because it was an oldfashioned, grassroots organising campaign who was made up of hundreds thousands of
volunteers around the country who all rolled up their sleeves and who would not stop fighting
until they got the job done. And so the campaign was successful because of their hard work.
The third reason is because the campaign was bipartisan. From the beginning of the
campaign, we asked all of our elected representatives - Labor, Coalition, Green,
Independents, Calathumpian, all of them – to get behind the NDIS. We would work with
anyone who was willing to work with us. And I think the final aspect is the campaign was
positive. And this was a very, very deliberate strategy. This is a very hostile and negative
political environment. And so, what we made the decision to do was to go in very simply and
explain what the problem was and explain how the NDIS would fix it.
We did not go in to see our elected representatives with a very long laundry list of all of the
ways that they were failing us, we wanted to go in and say to them, “Hey, you can be
campaign champions. You can make a difference to the lives of people with a disability who
live in your electorate.” And I think if you go on YouTube and you go in and look at the
comments of some of the MPs as they pass the NDIS legislation, you will see some of the
that those particular meetings had with our elected representatives.
But, and you knew there was going to be a but, as great as the campaign has been, for people
who are passionate about changing the lives of people with a disability, in their families, in
this country, job’s not done yet. Every time that I have been asked to speak about the NDIS, I
have said that we’ve got two jobs. And the first job was to campaign for the NDIS and get it
locked in. And once we’d done that, we had to turn around and all work together to make
sure it would be the best scheme it could possibly be.
Now, usually at that point, all the shoulders of everyone in the audience kind of went... But I
passionately believe it to be true.
And with the greatest of respect to my fellow panel members, they can’t do it by themselves.
They need the lived experience of people with a disability and their families to make sure the
scheme is not only the best scheme that it can be, but it meets the needs of those people that it
is intended to help.
The job’s also not done, because there’s still work to be done out in the community raising
public awareness and continuing to build support for the NDIS. Particularly in the early days,
everybody is going to be watching, particularly in the media. So we’re going to need to
continue to explain to people not only why the NDIS is important, but, perhaps more
importantly, why it operates the way that it does.
And finally, job’s not done yet because as great as the NDIS, the giant leap forward that it is,
it is, it’s not the whole box and dice. It doesn’t matter what area that you care to name public transport, education, employment, health - outcomes for people with a disability in this
country range from poor to abysmal. And if we don't make progress in these particular areas,
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it’s going to have a significant impact on the operation of DisabilityCare and also impede the
progress of people with a disability in their families able to participate more fully in the
committee.
So if we don't make progress on these areas, whatever support is available through the NDIS,
people with a disability are gonna remain poor and isolated, and not part of the community,
and that’s not what we want to see. So, yes, we did build a campaign called Every Australian
Counts, and yes, it was successful. But I think what we did was so much more, is that we
built a movement. And in the days ahead, it is that movement that is going to be so critical to
success. Thanks.
(Applause)
DOUGIE HERD:
Thank you very much, Kirsten. I’ve just been advised that Doctor Walsh, John Walsh, is
about 15 minutes away. So we’re making this panel session a kind of metaphor for the entire
delivery of the National Disability Insurance Scheme. We’re deploying the best techniques of
Japanese production and we’re going to do it just in time.
Nick, you’re a... I say this as a recently arrived member of the Australian Public Service, who
knows nothing whatsoever about it, to be frank. You're a seasoned and experienced public
servant and we thought it would be an essential part of people's understanding to look at this
development and design phase and your anticipation of what may come in the future from
your very strong background inside FaHCSIA and the Public Service.
So perhaps you could give us your perspective, at this stage, on the National Disability
Insurance Scheme, and in doing so, thank you very much for the contribution that you have
made to it. If I may say so, I think you, and others, in the APS are amongst those who’ve
made the behind the scenes contribution that will lead us to the realisation of many people's
dreams and aspirations that begin on 1 July. Most of us don't see that and the work that is
done. So to thank you for that, and also to ask you to give us your perspective on how we got
here and where we’re going.
DR NICK HARTLAND:
Thanks very much. So, this is a bit of a change in pace from Kirsten. I think John was meant
to sit between us. So we were going to start with the political nous, the intellectual grunt, and
then some detail, tedious detail. So we’re jumping straight to the tedious detail. So what I
thought I’d do... And I should say that I think I am speaking on behalf of not just the
Commonwealth public servant, but a whole range of officers from State and Territory
governments, I hope they’ll agree with what I say in a second, who’ve also made a major
contribution to the design and delivery of the system. So, bear that in mind.
SPEAKER:
Excuse me... (inaudible).
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DR NICK HARTLAND:
Oh, okay, sorry.
Alright, so, what I will do is I’ll tell you some very high level things about how I see the
design, and then hopefully when we do the questions I’ll have the wit to tell you why they
might be important for you to understand as well. Do, when I think about the design of the
NDIS, it’s quite a different approach to the way that the Commonwealth would normally
develop policy and implement a scheme. And it really draws together, for me, three quite
different perspectives.
So, the first is - and it’s been obvious here in the presentations at this forum - very clearly
located in a human rights perspective and that comes through in the design of the scheme on
the emphasis on control and choice. This was an aspect of disability services that the states
and, to some degree, the Commonwealth, were already going down. We were already going
down this path. And this is one of the areas where state offices had a great influence on
legislation, rules, and, of course, as well, the community groups that we consulted with was
one of the things that was top of their mind was to make sure that we keep faith with that first
impetus about human rights and control and choice.
The second one, perhaps also obvious - and I was going to speak after John, so I won’t
explain it too much - was the idea about insurance. So, what does that mean? Look, for me and again, there are others that will add more colour to this - it’s about having the flexibility
to invest in people in different ways depending on their circumstances, having a governance
process that allows really quite independent decision making about the scheme and the way it
works, and designing a scheme that can learn from what happens, what it does now, and use
that knowledge about what happened now to actually learn and change into the future. So
that’s the, sort of, second key influence. See, as a kind of policy wonk, I suppose you’d say,
when I think about the NDIS, I think about, you know human rights insurance.
And I guess the third thing that will be important to us in the months ahead is it really did
need a structured and disciplined decision making process. And so, when we were doing the,
talking to people about legislation, rules and stuff like that, often what was worrying me and
others was, could we craft a decision making framework that gives people a certainty of
entitlement? Because that’s, you know, clearly one of the things that was going wrong in the
current system. While also being able to make consistent decisions for quite a big scheme.
You know, half a million people, that is a lot of people, in full roll out, and that’s a lot of
people working with a lot of people, and so you need a framework that is kind of clear and
allows officers in the agency to make consistent, rigorous decisions about entitlement and
choice.
Those three influences, I guess, they come together, I think, in four ways in that, I’ll leave
you with, before we go into the questions, four things that I think are the kind of key design
features of the system. And hopefully, I said, I’ll have the wit to come back to them when we
answer the questions and show why they might be important to keep thinking about as the
scheme rolls out and as we keep refining the scheme. The first is that it does have to have a
rigorous assessment process for becoming a participant. The scheme makes a lifetime
commitment to people, so it has to be really certain that entry into the scheme is right.
Now, I should say, before my State and Territory colleagues lynch me, it also has to make
sure that there’s no cliff, in the sense that the design needs to ensure that the first person who
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becomes a participant, compared to the last person who didn’t, don't get a hugely different
treatment and can be helped to have an active life in the community. So that’s quite a
difficult, been quite a difficult area to get right.
The second key feature of the way the thing works is, it needed a mechanism for crystallising
people’s entitlements that was quite flexible. We’ve used the idea of a plan to do that. The...
What people get out of the scheme is going to be quite different. So, you know, the
entitlements in the scheme are going to range from very small packages, that are just, you
know, maybe all someone needs is very simple connection to the community - to extremely
large packages of 200, 300 thousand dollars a year. So the scheme needed have a way of
dealing with all that variability, while still allowing people control over what they got, which,
as we said, is an essential part of the system. So, we’ve used the idea of a plan in the
legislation and the rules to crystallise that, and for me, getting that bit right is a really
important part of the sustainability of the scheme and in the future.
The third one, maybe you won't be as interested in. But the scheme is unusually use
legislative rules, much more than we would normally use them in the Commonwealth. And
the reason for that is that we need to have a capacity to adjust the scheme as we learn what’s
happening and, well, you know, possibly - I'm not wishing this as a prediction – but, you
know, if things go wrong, then we need the capacity to adjust and make sure that the scheme
creates its intended outcomes. So, the third thing that’s quite different about this scheme is
the use of legislative instruments, that are more, you can adjust them more adroitly than you
can with primary legislation.
And the final one is, we, the body is run by what we call in the Commonwealth a CAC Act
Body, essentially a company. And so it is very different to the way we do other programs in
the Commonwealth and in many States in the sense that the decision makers are part of an
organisation that is quite independent from me as a public servant and indeed, as it turns out,
my Minister and other Ministers. So that is a really key feature of the design. And it is going
to structure a lot of the way in which you interact with the scheme going forward.
DOUGIE HERD:
Thank you very much, Nick.
John’s not here yet, so I’m going to move on to some questions that we’ll ask. And then when
we’ve got some of those questions answered, we’ll open it up to you to ask any questions
you’ve got of, by that time, our three participants. And I would like to start by asking a
question about what seems from the outside like a necessary but quite messy way of
constructing the scheme, which is why have all these different interests involved in building
and designing? There are government in all levels, State and Territory, there’s the Council of
Australian Governments, there’s a select Council of ministers, there are expert advisory
groups, expert panels, there are conversations with different States and Territories at different
levels of public servants. There are co-design engagement meetings happening in a variety of
launch sites. Why not do the old-fashioned, tried and tested, get a majority in Parliament, get
it agreed and then get a bunch of Canberra public servants to go off and come up with a
bright scheme? Why do it in this other way?
KIRSTEN DEANE:
‘Cause that is the only way to make sure it’s different than what’s gone before. I think that
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the NDIS, from the beginning, has not just been about more money, as welcome as that
would be. It’s always been about transforming the way we do things. And if you want that
fundamental reform, you can't rely on one group, however fabulous, to actually, to do that.
And I think, you particularly can't do it if you don't have the engagement of people with a
disability and their families in the process. And I think one of the reasons that we have the
kind of system that we have today is because people with a disability and their families have
been excluded from it, they have been voiceless in it, they haven’t had an ability to be the cocreators, the participants in it.
And so if you want that to be different in the future, then this very messy business of us all
working together is the only way that you’re going to get that.
(Applause)
DR NICK HARTLAND:
Look, I think, that, a very similar thing. Look, I think, in a way, just looking through the
telescope the other way, you know, the reason to do it is that no one person knows how to do
this stuff. So, you know, certainly, the Commonwealth does not know how to do this stuff, it
was well outside of our source of expertise. We’re not... The people working on it, you know,
because we’re egotistical and narrow minded, might have given the impression that we knew
everything. But, kind of, as it turns out, we didn’t. So, State and Territory people knew things
we didn’t. People with disabilities certainly knew stuff that we didn't, and community groups
and people organisations knew stuff we didn’t.
So if it had just been left to us, I don't think it would have been as good.
(Applause)
DOUGIE HERD:
Okay. How do we sustain those inter-agency mixed community relationships as we move
from the design to the implementation phase?
DR NICK HARTLAND:
Look, it is quite... The new... This new scheme, so this goes back to one of the key features
about it being effectively a company, where ministers are shareholders. So sustaining it... So
this... One is about getting the board right and giving the board as much freedom as it can and
not constraining them in what they do. But it is also about, will be about the way in which the
agency starts to interact with the community as well. So one of the things that I expect to see,
over... It’s hard to put a timeline on it. It would be nice if it was six months, but I suspect it’s
not. Is that if the lobby groups who occasionally talk to me or tell me what I am doing wrong
actually don't come any more and they go and talk to David.
(Laughter)
So success will be... Success will be, actually, when everybody realises that it is the agency
that is... We can start tomorrow. (Laughs) That when I’m out of a job, I think. That would be
good success. So... Look, how to sustain it, that the agency has those relationships that
officials and ministers and others have built up over the years and has an open dialogue with
the people that benefit from the scheme.
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KIRSTEN DEANE:
And I think there will also have to be a deliberate intent to do it. Because it’s not just going to
happen on its own, you’re going to... Because it is different, you’re going to have to
deliberately create those spaces for that engagement to happen. Because it just won’t happen
on its own, because of some of the power imbalance in the relationships. So you’re going to
have to deliberately have a strategy to keep that engagement going. Because it’s going to
have to be an essential part of the NDIS, is that continual feedback and evaluation of how is it
going and is it meeting people's needs.
DOUGIE HERD:
What will success look like from your different points of view? And I’d like you to think,
suggest to it, from three different time phases; next Monday morning... (Laughs) I love the
idea that it’s next Monday morning. I really do.
(Laughter)
DOUGIE HERD:
Although, our state manager colleagues who are, at this moment, busting a gut in seven
offices around the country may love it less than I do, sitting in front of you lot, ‘cause they're
not getting any sleep between now and then. However, but, next Monday, the start of the
scheme. And then as we move towards the initial three-year period of launch. So we go from
no clients, no participants, 9000 in year one, 26,000 by year three and then full scheme roll
out when there is that nice, gentle, easily progressed curve from 26,000 to 460,000
participants in just two to three years’ time. How might we judge, or how might you judge
success as part of the community that have helped get us to here?
I might ask some of you to answer that question later as well.
DR NICK HARTLAND:
Monday morning... So, about six months ago, I tried to convince the supervisor that my
performance agreement should have in it one measure that was 'absence of justifiable
criticisms'. She did not go for it but, you know, I think day one is a bit early to tell, isn’t it?
So really what you’re hoping for is that absence of justifiable criticisms.
I think the more important ones, for me, in thinking about the three years and the full
scheme... Look, I think, for me, and maybe this does reflect a bureaucrat's perspective and the
things I worry about in terms of the sustainability of the scheme are things to do with
reputation of the scheme, perhaps within the bureaucracy and the political milieu in Canberra.
And so, the reputation is a fragile thing for programs, schemes, public servants. So, and there
are a number of ways you can damage it. And you only have to look; there are well cited
examples around the Commonwealth world where reputations have been undermined by
mistakes that weren’t corrected or things not turning out as they were intended.
So, really, in three years, what I would be worried about is that we’re kind of still hitting the
parameters that everybody thought was the planning parameters of the scheme. And that’s
actually going to be really important, that we don't depart from that, otherwise my colleagues
in Treasury and Finance will be very crabby, and that’s a bad thing. So that’s really about
hitting those number and dollar figures, is actually going to be quite important in the medium
term. And that’s about some of the features I talked to you about before, about the need for a
rigorous approach to assessment. The need for rigour in decision making are going to be quite
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important in the early stages. But, you know, of course, if you think about control and choice,
you don't want to overdo it, too.
So we need to find a balance, that’s going to be quite difficult for the agency. Because at full
scheme, what I’d hope was actually the case about what would you notice about it is that
actually, it’s different to what we thought. Because it genuinely reflects people’s preferences
in a way that our current program simply can’t at the moment. And so, you need to have this
rigour while also allowing a flowering of choice and control. That, we hope, as I said... That
the flexibility that we’ve tried to design into the rules, so we can adjust them, and also using
the idea of a kind of a flexible approach to entitlement through a plan will allow us to hit that.
But it’s going to be hard. It’s going to be tough to get both that balance between rigour and
having, to the maximum extent, control and choice.
KIRSTEN DEANE:
Next week... Next week I am going to go to the launch in Geelong and I'm going to walk into
the office and I’m going to touch everything. (Laughs) Just to make sure it’s really real.
Because after all of the fighting, and all of the campaigning ,and all of the discussion, there is
finally going to be an office. And it is going to have DisabilityCare Australia on the door, and
we are going to be able to walk in and it is going to be real. So I think that is success next
week. Success in...
(Applause)
KIRSTEN DEANE:
...Three years, I hope things are starting to look different. I hope people are starting to get a
level of support that more accurately reflects their need. I hope that new supports and services
are just starting to emerge. I hope existing service providers are starting to change the way
that they do things. I hope people with a disability and their families are getting better
information than they currently get on which to base their choices. I hope some of that work
about capacity building for people with a disability and their families to take control has
started to happen.
I really hope my three years’ time that eyes have been lifted and horizons have been changed
and that people are actually starting to think that different things are possible, that alternative
visions are really possible. By full scheme, I’ll... I want to say something, personally, about
that. I have a little girl with Down Syndrome who is not even in high school yet. But by the
time the scheme is fully right, she will have finished high school. And so for me and our
family, the NDIS has always been about her adult future. So our family is going to spend the
next six years trying to get Sophie ready for the NDIS. So I hope that by the time the full
scheme arrives, we’re sitting down with Sophie we’re starting to build her capacity for her to
say what she’d like to do with her life, and what steps and processes we need to put in place
so that she can realise her vision for her, for her adult life, that she’s going to have this
meaningful, engaged, community-driven, community-led adult life.
And so I hope by the time full scheme, I hope our family is a kind of microcosm of what is
happening all over the country.
(Applause)
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DR NICK HARTLAND:
Dougie, wonder if I could ask you a question, put you on the spot. And that is to ask you; you
are now with the agency. What are you hoping, that when you go to beddy-byes on Monday
night, what are you, what is the ideal going to be for you? When you go home at 09:30 on
Monday night? What are you hoping that you’re going to be able... Which boxes are you
going to be able to tick?
DOUGIE HERD:
Well, I am going to hope I have made it through... (Laughs) This is true. I'm going to hope
that I have made it through the day without a tear or two, because I am Scottish and
Presbyterian, and we don't do that!
(Laughter)
DOUGIE HERD:
I know this sounds very silly, but I can feel them welling up here right now, to be perfectly
honest. But, for me... Those of you who don't know me - which is probably 95% of you - I
was struck by something Judith said, just to put into perspective our current context and
discussion about innovation and change. Judith received the first independent, individualised
funding package arrangement in Canada 33 years ago.
It was... Some of you know, some of you have heard me say this before. It was my good
fortune to be a disability advocate and activist in Edinburgh, Scotland from the time I had my
accident 30 years ago. And I set up some organisations there with colleagues in the advocacy
sector that led to the development of Scotland's first independent, individualised funding
packages in 1988. And I know around this room, there are people with a disability who have
taken responsibility for their own lives in individualised support packages supported by State,
Territory and Commonwealth governments over the last 20 and 30 years.
But often they have arisen as a consequences of pilots schemes, and trials, and one-offs, or
even sometimes things that have been done without anybody involved telling the powers that
be that they are actually happening. And it is a kind of odd world in which success in those
terms has to be masked. This is a point that Christine Regan, who some of you know from
NSW has made often. She has been involved in some very innovative and good practice, but
it has had to be on the basis of she doesn’t tell anybody, her service provider doesn't tell
anybody, and the Disability, Ageing and Homecare Department staff in New South Wales
who are receiving the information from the minimum information data set that has to be
collected don't tell anybody either, because if everybody knew that something was working,
somebody would probably tell them that they were breaking the rules.
So, I think, if we can go, if I can go to bed on Monday night knowing that we will have
brought into an arrangement relationships between people with a disability, support providers
who are there, ready, willing and able, and a policy framework that allows people to express
their individuality, that celebrates the fact that they are individuals and gives to them, for the
first time in many of their lives, the choice and control that they need, want and deserve, to
exercise their rights as citizens, we will have commenced or moved on to the next stage of
what my grandmother would call 'a job well done'. And I suppose that is where I want to be
on Monday night, and to sleep well, because I'm tired, to be perfectly... To be perfectly
honest. (Laughs)
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(Laughter)
(Applause)
DOUGIE HERD:
However, the metaphor has arrived. Took off in the turbulent, stormy weathers of Sydney,
arrived here to join us, John Walsh. There are many, many people have contributed to the
development of the National Disability Insurance Scheme. I doubt if any of us in the room
would begrudge a description of John as one of the critically important individuals who has
made a quite unparalleled contribution to the success of this. So, we welcome you, John.
(Applause)
And ask you to give us your thoughts on how we got here and where we might be going,
hopefully, positively into the future.
JOHN WALSH:
Thanks, Dougie and hello, everyone. And I’m, I’m just a bit flustered at having, having taken
the typical wheelchair travel journey from Sydney to Melbourne, or Sydney to anywhere.
My, my, my feeling at the moment is something of outer-worldness, to be honest, and it has
been for the last couple of years, really. What has been achieved here in Australia is a
remarkable , a remarkable acknowledgement of both the disadvantage faced by a significant
minority of the population, but also a willingness by government and the community to
recognise that minority.
So I don't need to take up my whole five minutes. In a very short space of time, that's, that's
how I feel at the moment. And I don't know how many of the questions you’re through, I
apologise profoundly for being late. I didn't want to be late today. But I gather from what I
heard you saying, Dougie, that you are up to the one about what will success look like on
Monday and next week and so on.
If I am allowed to jump in there, I think Monday is, you know, a day of significance,
obviously, because it is the start of the, start of the official period in which the scheme is
operational. But it is just a day. Really, a lot of the work has gone on in the last five years or
so. We have had many builders, not a lot of building licences in terms of insurance design,
but plenty of people who felt they could have a go at it. And... But really, the job is only at
lock-up stage. We are, we are about to move in to the, to what has been constructed.
Monday, it will be good to see if the lights go on, if the electricity is connected, if the roof
leaks, if the, if the foundations are sound, and that is all, really, that I look forward to on
Monday, that it is a nice day for the, for the launch. What do I look forward to in three years’
time? There is, there is a massive level of uncertainty, expectation. Looking forward to this, I
think a success in three years’ time will look like all government still being committed to
continuing and funding the full roll out of the launch in 2018, 19. And what it will take to do
that, to achieve that continued commitment by government is a real feeling of some value
being added. And I don't know how many other questions there are to go but I can say what I
think that value might look like as we go forward.
DOUGIE HERD:
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Okay. I would like to... It’s just about 12:12, because I like symmetry in my times. So, I think
what I would like to do is maybe open it up to the floor. There is a couple of questions that I
would like to come back to just in the last few minutes, if I may, and ask the panel to give us
a reflection on, if we don't get them asked. But assuming that we have the roving mics ready
to go and an active bunch of runners who are in the, in the corridors, can I ask people to stick
their hands up, if they can, and ask some questions. And the first person I saw is the
gentleman in the (inaudible) chair in the aisle just down here. And then I am going to go to
the gentleman in the blue shirt and then I'm going to come back to you in a minute, and I’ve
got one here. It Okay?
QUESTION FROM FLOOR:
My name is (Unknown term) and I’m from the Disability Advocacy Service in Victoria. I
have a two-part question. The first part is, mainly ‘cause... We... I have found, from a young
person's point of view, I have found the Every Australian Counts campaign a little bit
empowering but not so much disability person focused. My first part of the question is; now,
going forward, was there any plans to highlight what this scheme, not only, what
DisabilityCare not only means for people with disabilities but things like employment
figures, and figures of surpluses and deficits and how we, how DisabilityCare contributes to
that.
And my second part of my question is how much... I know the board was picked by
government officials but I was just wondering how big a part was the picking of the board
members up to people with disabilities? Because although the board members have got a
massive range of skills and experience, I find it very concerning that the board members, only
very few of them have disabilities themselves and there’s no young people representation on
the board at all.
DOUGIE HERD:
Okay. Thank you very much. Two parts to that question.
KIRSTEN DEANE:
Thank you. I think there is still a vital role for both the campaign and the broader disability
movement, generally. And I think it is because... There is a very, you know, famous old
saying that, you know, the price of peace is eternal vigilance. And I think the eternal
vigilance is firstly about making sure that people with a disability and their families are
constantly involved in, as the scheme is rolled out, in that feedback and evaluation process.
About how is it going, what can we do better, what do we need to change? That process. That
is going to be eternally vigilant, to say, “Yes, we really want this scheme to be the very best it
can be and that it really meets the needs of those people that it is intended to help.”
But I think that’s the second part of the eternal vigilance, is continuing to prosecute the case
with the community about not only why we need the NDIS, but why it works the way that it,
that it does. In my former life, and for my past sins, I was a journalist and I know how these
public outrage stories go. And in the beginning, we’re only going to need one shock jock who
comes on and says "It is an outrage that this person with a disability spent this precious
taxpayer dollars on X." And X is going to be something that most people in this room think is
perfectly reasonable. It is going to be something that the agency approved as a reasonable and
necessary support. But you are going to get a shock jock who said it’s just outrageous. He is
going to rant and rave and then we will be off and running with it.
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And it is at that point that people with a disability and their families are going to have to gird
their loins and patiently explain not only why we need the NDIS but why it operates the way
it does. Why control and choice are not just words, they are not just slogans, but they are
fundamental to the operation of the system and the consequences of enshrining control and
choice. I think if we want control and choice to be central to the operation of DisabilityCare,
then there are times then we are all going have to be prepared to defend it and defend it
publicly, because it is going to come under attack.
DOUGIE HERD:
Nick, can I ask you to answer the question about the board?
DR NICK HARTLAND:
Well, I, sorry, I do feel a little bit constrained talking about the board, so I will be brief. But
look, just on the employment... Look, I don't think it is a, I’m letting a cat out of the bag to,
saying that the employment rate of people with a disability in Australia are pretty disgraceful
as a community effort. So, you would hope that one of the things that we achieve, if we’ve
achieved anything out of this, is better employment for people with disability by giving them
support that they need. And also, I know that that the agency is actually very active and
aggressive about recruiting people with disability. So you would really hope, in quite a short
timeframe, that you would see some changes on that regard. Look, the board's appointment...
Sorry, I am going to have to be very careful and bureaucratic with my words about the board,
I really, and I'm sorry for that. The board’s appointed by ministers. They... When they were
discussing appointments, getting representation from people with disability was a really
important consideration for them. So great efforts were put into that regard, I can assure you.
But the board also has to be a board that can come together and manage what is going to be a
$22 billion organisation sailing through some very uncertain times. And so it does have to
have... There were other considerations, too, about who to appoint and what to get the right
mix to start to build this organisation.
DOUGIE HERD:
There is a question in the second row. The gentleman put his hand up earlier.
QUESTION FROM FLOOR:
Thanks very much. My name is Michael (unknown term), I am a carer and I am a political
philosopher. My question is this; listening so far to the panel, I have managed to identify
Kirsten Deane is a very passionate person whose participation in the NDIS campaign has
been driven by her passion. And perhaps identify Dr Hartland as someone who is driven by
policy aspects that are mainly concerned with economic redistribution and finding an
economic base for people who work in and participate in the whole inclusion discourse. I
want to sound a warning, which isn’t mine, I wish it were, from a UK sociologist called Ruth
Levitas. Who says that these discourses do not really meet very easily. She talks about the
passionate discourse as being a discourse driven by people interested in a moral underclass.
So in other words, the most deprived people in our society. And people interested in
redistribution as essentially socialist or left-wing.
And now to the question. In mid-September, we have a Shadow Treasurer who is likely to
come into government and who came back from an overseas trip the other day with a warning
about Australia becoming increasingly "an entitlement society." I really don't know what he
might mean by this, so I suspect that I do. But what kind of provisions will the board have to
13
offset and reduce what seems to me to be a very threatening policy literacy that he intends to
inflict on us in the name of austerity? Thank you.
(Applause)
DOUGIE HERD:
I am going to go to the actuary from PricewaterhouseCoopers to answer that question, ‘cause
they’re probably not know as being at the forefront of Trotskyist revolutions.
JOHN WALSH:
Thanks Dougie, thanks for the question. That’s a good question. I think there are two parts to
the answer. The first one is, I think the Shadow Treasurer is perfectly within reasonable
responsibility as a politician and as a manager of taxpayer's funds to be cautious about, about
this scheme. Just as Kirsten said, that there’ll be shock jocks saying, “What about the
profligate spending on what we would regard as reasonable?” There will also be shock jocks
who say, “Why haven’t, why hasn't DisabilityCare provided support to these hundreds of
thousands of people who have a bad back and can't bend down and pick up their, their toys
off the floor, or something like that?” So, there is significant risk in this scheme that the, the
public rhetoric expects more from the scheme than it is designed to deliver. And it’s critically
important that the governance of the scheme ensures that it’s delivers to those people that
need it most. And there are plenty of those people. We estimated, in the Productivity
Commission, that there are over 400,000 of those people.
The second part is regard, is in regard to the overall economic argument in favour of the
scheme as it is designed, $20 billion. And there is very strong economic evidence that if the
scheme does not go ahead in its, in its designed format, that the cost of the disability system
will continue to escalate to a, to a level that is above that $20 billion. In work that emerged in
the late 1990s, it was clear that the cost of disability born informally, by the community and
by parents and carers, was about four or five times that provided by the formal sector. So, all
you need is a 1% withdrawal of the informal care support to make a four or five percent
increase in the formal cost of it. So if you start to talk about a 40 or 50% withdrawal in
community support, you start to talk about doubling or tripling the cost of the disability
sector. So a $20 billion scheme, economic scheme, in that sort of context, is a very
manageable and justifiable investment by the Australian population, the Australian taxpayers.
That was the sort of part of my answer to the, “What is the win-win-win here?” There is a
clear win here to government in economic terms. I'm not sure that the Shadow Government
understands that at the moment, but that is the argument that would be put to them.
DOUGIE HERD:
Thank you, John. It’s... There is one question that I'm going to take, and then it’s, I am afraid,
12:25, and I have no intention of getting between 1000 fierce people like you and lunch.
(Laughter)
DOUGIE HERD:
So I am going to take that, final question, if I may. We are all around, of course, and
available. Well, not me, who cares. But the rest are around and you can ask them questions
over lunch. But we’ll take the final question, if I may, from down the front, and then I'm
going to ask each of my three panellists, after we have answered that question, just to say a
14
final, concluding thing about their hopes for the scheme as we roll out, contextualising them
within their thoughts about what a challenge might be. But the question down the front?
QUESTION FROM FLOOR:
Thank you very much, indeed. I am Ms Gail Stevens. I am deafblind. I have virtually no sight
now and I use a cochlear implant, but I find it much more beneficial using tactile interpreters.
There’s a couple of questions that I have. One; I learnt yesterday, very disturbingly, that,
particularly people who are born with a disability, if they should tick over to 65 by the time
the scheme starts, I found out that they are not eligible for the NDIS. I was actually really,
really shocked to hear that. Secondly, that is, particularly people who are born with
significant disabilities, they are going to be put onto like an aged package. And usually these
people do not receive the appropriate services that they have. Second part of my question is
that the deafblind community, we actually are quite a few years behind the stronger people
with disabilities. That is, our people who have ushers, people who are deafblind, lost their
vision or hearing or both in later on in life because of accident, I just am sort of concerned
that it is going to take us, our deafblind community quite a few years to sort of catch up with
everyone else. And I just wanted your, I just wanted your feedback on that, because I'm sort
of quite worried, particularly our deafblind community, people who is going to miss out on
the NDIS because of the fact that they are nearly 65. Thank you.
DOUGIE HERD:
Okay. Who’s answering? 65 question?
DR NICK HARTLAND:
So, yes, the 65 age cut-off was extensively discussed. So, late last year, Minister Macklin
indicated that she wanted us to have a look at the issue. She was very concerned about this
issue, having talked to community groups and at that point really had quite an open mind.
And we had a really close look at whether 65 was right, whether there should be some age,
whether there should be no age. It is actually a really hard problem to solve, because you
contend, you’ve actually balancing a couple of inequalities about 65. You have got the one
you have raised, about the differences between over and under 65, but you’ve also got
differences about people... Unless you’re assuming that the NDIS will replace the aged care
system, which no one is. Then you have got to balance the difference between, say, two 67year-olds and what happens there, between one person in the aged care system and one
person out. In the end, the government decided to keep with the PC’s recommendation that
there be a cut-off at 65. It is an issue that we will be looking at and examining with our
colleagues in the Department of Health and Ageing. The issue really, I think, is can the aged
care system, which is on a reform path that is somewhat similar to disability services, can it
provide the same flexibility in services and a level of service that the DisabilityCare system
can?
There is no reason, in abstract, to think that people actually can't get their needs met in aged
care. Although I know, before you start throwing things at me, that, that is harder in practice
than it is to say kind of glibly from a stage. But we will keep an eye on 65 issue and see how
it goes. I guess, on the deafblind community, you know, this is, you would hope that by not
taking a programmatic role, by not thinking of programs for different diagnosis groups, as we
have done with DisabilityCare Australia, that you should find that each group, each
community kind of gets what they need and that would be one thing that we would hope that
we wouldn't be talking about in three years’ time, communities being at different stages.
15
DOUGIE HERD:
Finally, then, I would like to ask each of our panel members. And I'm sorry, we’re, we have
done an hour but I’d, I would like to ask you each just to, you know, your one key part in
thought about the movement from design to implementation. You know, what do you hope is
going to happen and what is the challenge that you might see awaiting us?
KIRSTEN DEANE:
I think the challenge that we are just starting to grapple with is and will have to grapple with
further is about capacity building for people with a disability, their families and those
organisations that support them. I think it goes without saying that for people to make good
choices, they need good information. But particularly if you are a person with an intellectual
disability, particularly in the beginning and you have never had the opportunity to make a
decision before or been involved in planning before, you are really going to need some
support at the beginning to increase your capacity over time. But also, as a parent, I would
like to have a plea for the inclusion of parents in that capacity-building process.
Parents are often judged very harshly for the decisions that they make, particularly those that
they, are seen to be barriers to greater independence for people with a disability. But I think it
is fair to say that very few parents start out with low expectations. From the time that your
child is diagnosed, you are surrounded by a raft of medical professionals, allied health
professionals, other kinds of professionals in your life, setting the bar very low. "No, you
really can't expect that." "No, your child is not going to do that." "That is a very unrealistic
idea that you have got there." And I think somewhere along the way, it is not surprising that
some of that gets internalised and you have got to be pretty tough to kind of stand up to that
barrage all of the time.
So I, you know, would like to see is greater capacity building for people with a disability, but
also parents to be, and other significant others, to sit down and try and provide an alternative
narrative, to lift those eyes, to have shifting horizons, to be able to sit down with other people
with a disability and their families who have done it, explain how they done it and show that
the world did not end.
It was fantastic. And I think if we don't do that, if we don't invest that time in people with a
disability and their families and those organisations, people will end up just choosing what
they have chosen before because we have never given them an alternative vision of what is
possible.
(Applause)
DOUGIE HERD:
Thank you. Nick?
DR NICK HARTLAND:
So, we have talked about building the scheme and obviously there’s a lot of very tired people
whore are involved in building an organisation, but they are actually not the same thing. So,
part of what we are building over the next while, as the agency starts to operate, is actually a
culture and a new way of having a governing body interact with participants in the
16
community. So, my parting thing is that what is being built is actually, you would hope, a
new culture, a new way of people interacting with an organisation that provides funding. And
that is something, building culture, building different ways of interacting, there are a whole
lot of... Well, sorry... Well, why worry about this, there’s a whole lot of organisations running
around the Canberra landscape that actually don't have very good cultures about the way they
interact with their clients. Building culture is complex. Like... We hope that the legislative
and decision-making framework, you know, the house to lock up, as John put it, will
facilitate the right culture. But, you know, in the end, I don't think legislation, bureaucrats and
others actually can direct culture although, they, I think it is true to say that they can spoil it if
they behave in the wrong way. What the culture will come from, and what the new way of the
scheme interacting will come from, is, you know, the agency, its board, but also participants
in the community. So, the parting thought that I would like to leave with you is actually, that
is about you as well. So there is a responsibility of everybody, service providers, community
groups, participants, you know, a colleague in the industrial relations area, to all kind of get
their shoulder behind the wheel to make sure the scheme in the widest sense, kind of, thrives.
(Applause)
DOUGIE HERD:
John?
JOHN WALSH:
Yeah. My comments were going to be similar to Nick's. This, this building is at lock up stage
now. And it is owned by the Australian people. The moving in needs to be moved in by the
whole of the Australian population. My experience in similar insurance models in the
accident compensation area suggests that these sort of schemes get into trouble when those
who are, those who they are intended to support are not satisfied with the support they are
offered. So, the people with a disability and their families don't feel like they are getting what
they expect.
You know, at the moment there is a massive expectation out there, so there is a very high risk
that people are not going to get what they expect. I, I guess, put out a call to all of you and all
of us to react to that lack of meeting in expectations in a positive and constructive way. The
destructive forces come in when, "I am not getting what I expect so I’m going to try and pull
the scheme down, or try and change the scheme, or try and argue against the scheme." And
that set in place a negative dynamic, which is very quickly built on and, and supported by
people who would rather not, not spend the $20 billion, such as politicians, for example.
So it is critically important that we pull together here. Not everyone is going to get everything
they expect. But just the very fact of having $20 billion instead of $6 billion means you are
going to get a hell of a lot more than you are getting at the moment. So, please, all of us,
work together.
The other tension happens when support providers, service organisations, basically don't do
their job properly. So, in the insurance world, it is about claims agents, claims managers,
service providers, doctors, health professionals, acting as just shopkeepers, not really getting
inside and helping the people they are there for. So I would also implore the support
structure, the industry, to really get on board with the fact that this scheme is now owned by
people with a disability and their families, and that is who it is there to support. Thank you.
17
(Applause)
MAURICE CORCORAN:
Thank you to all our panellist on behalf of the crew. So, if you could show your appreciation.
We are going to break for lunch and then go straight into the concurrent sessions afterwards.
So, please refer to your programs. And thank you.
(Applause)
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