DCA - Opening Session – Choice and Control
MAURICE CORCORAN:
OK, well, look, thank you, everyone and welcome back to the second day of the DisabilityCare
Australia Conference. What a great day we had yesterday and an amazing dinner last night. I hope
everyone made the most of it. And we have a few housekeeping things that we have to go through
again today, and... because there are some delegates who are here today who weren’t here
yesterday. So, just bear with me for a little bit.
If we could remind people again, if you could turn off your mobile phones, or put them onto silent.
We will have concurrent streams again today, commencing straight after morning tea at 10:30. So,
once again, make sure to take a look at the program and choose the stream you will be attending in
advance.
Just another announcement about this afternoon, the conference organisers have asked me to
remind you that there will be complimentary SkyBus transfers to the airport from 5 PM. But, if you
want to be on that bus, you do need to put your name down on the registration desk at morning tea
this morning. So, please, if you want to be on those SkyBus transfers, make sure you do that.
In the case of a fire - the fire alarm going off - we have been instructed, again, to stay in this room.
The fire doors will be closed and we will be evacuated as soon as it is safe to do so.
Bathrooms, again, there are bathrooms on this level, but also on the ground level, on level 1, and
there are more accessible toilets just past the registration desk on the ground floor, again, where
you can follow those directions down there. They’re clearly signposted.
Hearing loops in this room and in all the other rooms. The channel for this room is channel 28 and if
you are having any problems, again, try and move to the centre of the room, where we are informed
the loops work there most efficiently.
If you have any questions, or need any assistance, during the day, please approach our people in
blue shirts. They are here to help in any way they can.
Also, again, for those with assistance animals, the dog green patch is just past the registration desk,
to the left as you go out the doors on the ground floor again. So, please make sure that you are able
to use this.
And, look, we start today's session with a video message from Judith Snow in Canada. An
outstanding social inventor and advocate for inclusion. In 1980, Judith became Canada's first person
to receive individualised funding from the Government of Ontario. She developed the model in
Canada that puts government funding directly into the hands of people who need support. And it’s
my pleasure, today, we’re actually going to have Judith live for questions and answers, but we have
a brief video that we are going to show about Judith as a way of introducing her. And then, like I
said, we will be able to go live to Judith in Canada for people to ask some questions and for Judith to
respond to that, which is really maximising our technology. So, if we can skip now to the DVD, that
would be great.
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SHIRLEY:
Well, thank you very much for inviting us to speak to the conference via video. First I want to
introduce myself. My name is Shirley, Shirley Edwards. I am a parent of a 28-year-old who has
multiple disabilities - hydrocephalus, CP - and I’m also a care giver for my mother, who (inaudible),
also a cancerous (inaudible) survivor, so she has also disabilities. And, then, I’ve also been a director
in the disability field for many years and executive director and in those years I was introduced to
(inaudible) Funding Coalition, almost 20 years ago now. And that’s my colleague and friend here,
Judith Snow.
JUDITH SNOW:
Hi.
SHIRLEY:
So, without any further ado, Judith, please introduce yourself to everyone.
JUDITH SNOW:
Hi. I’m Judith Snow and Shirley and I are here in Toronto, Ontario, Canada. We do wish we could be
in Australia. But, unfortunately that didn’t work out. But, we have between us, Shirley and I, a great
deal of experience, both as a person who uses individualised support and a person who plans with
other people for individualised support. And Shirley, who has also... you have been a service
provider, right? And we have both been on many committees with the funders, the government
people. So, I think we’ve got the bases covered, and so he we go.
SHIRLEY:
What do we mean by person-centred? If you could, you know, speak to that and what that means.
JUDITH SNOW:
One of the things it doesn't mean is that the person who is going to be supported, or who is being
supported, gets to have everything their way. Because it really wouldn’t work that way. Personcentred means finding the way that works with this person and having this person as head of the
team, as it were, and we’re going to say more about that. Centring on this person in a way that they
become a full contributor, economically and socially, in their community.
SHIRLEY:
Just to identify, who are the players in this? (Inaudible).
JUDITH SNOW:
First, there is the person. And then, there is almost always a parent, or another person who been a
very close and committed provider and also a very important relationship, a very important friend
and loving person in that person's life. For now, we’ll call them the parent. Right?
And then there is the people, or person, who becomes, or is already, the frontline staff person. I
have five people in my life who are people that provide me with 24 hour support seven days a week.
Then, around that, there may or may not be an agency, who is also part of the provider. And then
there is the government. So, I think that is five different levels, really.
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A community may not yet be present for some people, but when there’s some kind of way to be
present to the community and include them in all the different conversations, it is not really possible
to build a person-centred life. Or, to put it the other way around, the more person-centred we are,
the more the community is involved.
SHIRLEY:
The normal life of somebody who lives and thrives in a community, their lives are not stagnant and
not the same. So, it’s a process. And I want you to share with us a bit about that, what is it like to be
a fully participating person in a community?
JUDITH SNOW:
Well, to tell a little bit of a personal story, I first got individualised funding in 1980 and I had recently
moved out of a chronic care facility at that point. And I had lived, not a totally sheltered life, but a
pretty limited life up to that point. So, I had some very important ideas, but they weren’t very, very
focused, about how I might like to live. For example, I thought that I might like to become a lawyer.
And I registered for law school and got in, and even before I actually started, I realised that wasn't
what I wanted. I thought that maybe I wanted to live near the university that I had graduated from,
but actually, right after finding an apartment, I think about six months later, I was already itching to
move downtown, which I did.
And I found out over the years that I am not alone. When people who have not had full ability to
explore their communities and explore their contributions, we all have ideas about what we’d like to
be, or where we’d like to be, that get more clear the more we get to explore. So, the exploration is a
key part of the process of being person-centred.
Now, in typical ways that we provide services, or that you have in the past, the service that is going
to be provided is already fixed by the program. And that’s what’s got to go. And the good news is
that it is actually possible and really quite easy to let go of the idea that we already know what a
person's needs are, in order to be able to explore where they actually can be the best contributor for
themselves in the community of their choice.
SHIRLEY:
Now, with individualised funding, how is it allowing and supporting the individual accessing disability
support services to have a full, participating and constantly changing and expanding life of hope,
development and evolution and experience? So, it’s a totally different model than what we very
often think of and is getting somebody supported to the point where they are fine now and nothing
will change.
JUDITH SNOW:
Oh, we think that your questions are probably 90 per cent about, well, how do you be that flexible?
How do you provide safe and sufficient supports to a person and, at the same time, not plan them in
such a way that they restrict the person's exploration? And that is the key to the whole picture.
SHIRLEY:
Thank you for bringing that up. So, one of the things that I want to dispel is the myth of control. And,
you know, I mentioned earlier on, too, when we have teenagers, when we have spouses, who
controls them? It never works. As soon as you control someone else, they will give you resistance
whether they agree with you or not, quite frankly. So, it is not about controlling others, it is about
have control of yourself. And we are speaking right now about the individual, Judith, about what
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that service is for you, but then the service providers themselves, the direct care providers, the
funders, the organisations, there is a bit of a myth of a loss of control. You know, so speak more
about that. Because I think it’s almost (inaudible), they have a lot of, you know, (inaudible) control
over (inaudible).
JUDITH SNOW:
Well, the... it can't work if anybody is being abused or exploited. Whether you are talking about the
person or the employees, it just can't work. And you can't have a whole society...
Anyway, so let me give you some examples. My staff and I created a manual, we call it the ‘How we
do it manual’. And we actually created it somewhere in the nineties and have updated every three
or four years. And we created it together. And what it gives us, it gives all of us the basic tools for
how do we dance together as me being their boss, but them really leading me into a life that works
for them.
So, I hired somebody recently who is a personal trainer. He has no background in personal assistance
and, actually, I prefer it that way because we can shape each other. We can shape each other is
actually what I am trying to say. We shape each other to what we, each other, need. And what is
required from him is that he be a good driver, that is my top criteria, that it doesn't drive up my car
insurance because I hired him. And, also, I really like that kind of running around in the world. So, we
fit. What’s also required from him is that he’s physically capable of the hard work it takes to look
after me. But also that he is willing and he’s a good listener. And, as you can see, we go through
together all these different ways that we’re going to be with each other. And the being with each
other is the key. Once we’ve got it down how we are going to be with each other, then I am free to
set the agenda of the day and he is free to communicate with me about what works for him and
what doesn't work for him. And it is an ongoing negotiation throughout the day.
Now, as you get this picture, you will see that, really, a key part of all of the person-centric is opening
spaces for conversations between people, so that everybody can say, you know, in order for this to
work I need whatever. It might be whether it’s I need 40 hours a week, or else I can't afford to work
40 hours. Or a provider might say, “I need a bi-monthly report of what my staff are up to.” Or the
funder might say, “I need to find out what the economic impact is of having services provided in this
way.” So, whatever it is that you actually need to do it, that needs to be part of the conversation.
And to give you an example, I know a young man who his joy in life is bussing tables at coffee shops
in Manhattan, New York. And he does this at two different coffee shops. So, being person-centred
for him means that his family and his staff got good at finding the places which welcomed his ability
to bus tables. And then after that was established, got good at including those people from that
community in the conversations about how is he going to get there, what’s he going to be paid, if he
needs support at any point, who is going to provide it, how do we keep it stable, what happens if his
parents want to go on holiday and he is needed, how do we work out the transportation? So, the
community becomes involved in the conversations.
SHIRLEY:
(Inaudible). Traditionally, your parents, if you’re something like myself (inaudible). And you’ve got to
let them (inaudible) parent. The only times (inaudible), you have to remember that (inaudible). So I
can share with you about the most... the biggest lesson I got from my son in his early twenties. You
know, in his life, he was (inaudible) following my directions and (inaudible) what he wants to do with
the future and so on. It was getting just a little over controlling (inaudible). And, at the time, he met
a nice lady, he went off for a sojourn in another town and didn't tell me. (Laughs) And I’m laughing
now (inaudible). (Laughs)
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But, the thing is, is at that point too, it was about reaching out to this community. The community
carried on and, you know, liaised with him to make sure he was safe and (inaudible) he was safe. Not
to go over and swoop down, like a mother bear, and (inaudible). In his twenties, he has the right to
do what he wants. So, when he returned, the first thing is he returned to his community, not just
me, but the community. And we all (inaudible) support his exploring of life. It was a wonderful
experience for him.
You know, the fact that I (inaudible) aware of individualised funding, person-centred approach and
what allowed me as a parent to not step in and control, as much I felt like it, I assure you, I had
conversations with people like Judith Snow as well, to support me. (Inaudible) my community. But, it
is about people having choice. And one of the biggest things about a lot of people who have a choice
that I want to say, is that it isn't about letting them choose what you agree with, it is about also
honouring their choice with what we don't agree with. That’s the real honouring (inaudible) people’s
choices.
JUDITH SNOW:
And from the provider’s perspective, it is not a matter of choosing the services that you already set
up, but actually creating a way for people to create services out of nothing. Out of relationships, out
of community, but not predicting whether this person is going to need it. This young man in
Manhattan has met over 300 people and has two jobs, who actually know him, and care about him,
and that’s a huge resource to draw on, in terms of people who can enter the conversation about ow
to keep this going, where to find resources that might be missing and how to deepen it so that it is
even more of a contribution for him and for the community.
SHIRLEY:
Judith, I couldn’t emphasise that more. The outcomes of individualised funding, as that they get a
life to expand and explore and grow and know (inaudible) their contribution is. But also, they get
access to community and engage with friends and their supports expand naturally through
communities as well.
JUDITH SNOW:
You don't have to start from scratch. And we’re going to create a list of resources that are available.
And our list won't be complete, there is even more.
SHIRLEY:
(inaudible) capable of managing their staff and so on. My son, for example, (inaudible) manages staff
but the case manager is very difficult from me, has a different (inaudible), a brain difference,
although not a developmental delay. So... and then there are people without any differences that
way, but they may not have a capacity or a strength in management or leadership. But they need
some sort of support.
So how I look at it in a person-centred approach is that this is as a business model, where that
person is the CEO of their life and various people who actually provide any, you know, paid services
and so on are their consultants. So, you know, they are the specialists in certain areas, while the CEO
is the expert of their life. And, you know, so they need some assistance for either budgeting or
resources, again, like Judith says, there is already templates out there that have been provided to
help with the financial side of things, help people in their hiring practices. Judith herself has a
wonderful checklist on what you are looking for when hiring people and how to manage that. We
don't have to reinvent the wheel. We just keep expanding and improving on it.
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JUDITH SNOW:
Once again, thank you so much for this opportunity. I am totally excited for you. I know it'll be crazy
on July 1st when it starts, but it is a really good crazy. And if there is anything that we can do to help
it go for you, to go as smoothly as possible, please be in touch. Thank you and have a great
conference.
(Applause)
MAURICE CORCORAN:
Well, that’s been a terrific way to start the day and really acknowledge Judith's work in Canada and
how important it is for us to learn from. So thank you, Judith, for your question and answer video.
For everyone who wants to follow that up more, there... the session... there will be a session at
10:30 this morning where you will be able to get involved with questions and answers with Judith.
But, so that we can keep on schedule at the moment, the... I’m informed the minister is here. So, I
would like to invite the Honourable Mary Wooldridge, MP, to the stage. Thank you for coming here
today. Our keynote address this morning is by the Honourable Mary Wooldridge, MP, the Victorian
Minister for Mental Health, Community Services, Disability Services and Reform. Mary has been a
long... has had a long held passion to improve opportunities and a way of life for Australians. She has
been at the forefront of the Victorian Government’s major overhaul of the state child protection
system and secured Victoria as one of the six launch sites for DisabilityCare Australia.
So, could you please join me in welcoming Mary to the stage?
(Applause)
MARY WOOLDRIDGE MP:
Thank you very much, Maurice. It is absolutely fantastic to be here. You don’t believe how looking
out on the sea of people, all who are supporting the big changes that have come, how exciting and
reassuring it is about all of us working together on this scheme.
I want to acknowledge a couple of my parliamentary colleagues. Andrea Coote, the Victorian
Parliamentary Secretary for Community Services and Families. Tracy Davis, the Queensland Minister
for Disabilities. Kelly Vincent from South Australia. And I know there’s been, obviously, federal
ministers and others yesterday as well. I also want to acknowledge Bruce Bonyhady and
congratulate him on his appointment as Chairman of the DisabilityCare Australia board. I would like
to also acknowledge Graeme Innes, the Commonwealth Disability Discrimination Commissioner, and
our own Laurie Harkin, the Victorian Disability Services Commission, both of whom fulfil very
important roles in the disability sector leadership across both the state and the nation.
I would also like to acknowledge and pay my respects to the traditional owners, who have loved and
nurtured the land we meet on today for many, many hundreds of generations.
So, first of all, I want to extend to all of you a warm welcome to chilly Melbourne. And for many
people who have travelled for a long way to be here for this conference, it really is a wonderful
gathering. People with a disability, their families and carers, disability organisations, peaks,
government representatives, academics and people who are so interested in the changes that are
coming in just days ahead.
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In fact, in thinking about today, I realised that the last time I spoke to a crowd of this magnitude was
the National Disability and Carer Congress back in May 2011. And what a way we have all travelled in
the two years since then.
Now, I re-read my speech of what I’d said two years ago. And I started by saying, "I have been asked
to talk to you this afternoon about the future of disability here in Victoria, which is actually an
incredibly difficult task, because the future of disability is totally uncertain. It could be more of the
same under our current, failed, broken system, but our hope is that the future of disability will be
different. That it will be summed up very simply by one big idea and four letters: NDIS. It’s an
approach that has the potential to revolutionise the lives of millions of Australia living with a
disability, or caring for someone who does."
And now, two years on, here we are. With just seven sleeps to go until the launch of the National
Disability Insurance Scheme. Although, describing them as sleeps is probably a little bit misplaced, as
I think anyone who’s involved is not getting much sleep at all.
So, given the title of the conference, I obviously want to talk about choice and control and, firstly,
why it matters. When choice and control is implemented well, it equals better lives for people with a
disability. It equals supports that can be developed and delivered in partnership. It equals better
community outcomes. It equals flexibility. It equals innovation.
And, for all involved, it actually also means better efficiencies, because people are almost always
best placed to make decisions about their own lives and how to get best value for money when
making those decisions. Choice and control is important so that people with a disability can be at the
centre and, to the extent that they’re able, in charge of planning, design and implementation of the
supports and services that they need. This means the support they are getting is most effective.
Choice and control means working... when working well, means that people with a disability have an
equivalent number and variety of choices as anyone does. It provides people with an opportunity to
enable them to flourish and achieve the potential and achieve everything that they hoped to. And it
is also fair. And I think, being Australian, the notion of a fair go is one of those core values that we all
hold. And it is sustainable and it’s long term. And it needs to support people on an ongoing basis, so
they receive the support they need at the right time and in the right way for as long as it is needed.
Principles of choice and control are based on growing international and national experience, as well
as in response to strong experience expressed by people with a disability and their families and
carers.
Victoria’s been providing individualised funding for 16 years and individual support packages have
substantially increased over about the past six or seven years. And the full flexibility of Victoria's
existing system provides for individuals to choose their own support workers and establish how they
will work together. High levels of satisfaction are reported by clients who are directly managing their
own support packages and employing their own staff.
It also provides for frequent negotiation and the mixing and matching of different providers and
different services so that the people are genuinely getting the support they need when they need it
and people report taking part in more social and community activities as a result.
When we see choice and control in action, we see more people with a disability spending the time
doing the things that make sense to them, with the people with whom they want to spend time
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with. We see opportunities that were never considered possible being identified as goals in plans
that, with work and commitment, turn into reality.
I would like to make these points real with a couple of journeys that I have heard about recently. The
first is about Ben, a young man whose life changed when his passion for cars became a day job
washing cars. His life went from being very unhappy in his day service to actually being a valued staff
member. And the skills he learnt to catch public transport to work meant that he was also able to do
that on the weekends to pursue his passion of sailing.
Another example is Faye, the mother of a teenage daughter, who saw how choice and control
changed something as everday as her daughter's wallet. In the beginning, the wallet was simply the
holder of the daughter’s identification and some money. The impacts of choice and control could be
clearly seen in the changes to that wallet, because, over time, it became full of membership cards
for gyms, and the library, reflecting new community connections. A Myki card so that she could
travel on public transport and a growing set of discount cards for fashion shops, very typical of
young women.
So, how will choice and control be exercised for DisabilityCare Australia? Now, the commitment that
DisabilityCare Australia will operate giving effect to the policy and principles of choice and control I
think is unquestionable. In opening the conference just yesterday, Minister Macklin said that the
scheme... said of the scheme that the goals and aspirations of every individual are at the centre of
everything that we do. The chair of the incoming board, Bruce Bonyhady, gave the commitment that
DisabilityCare will hold true to its mission to give people with disabilities control and choice.
Building DisabilityCare Australia through legislation, rules and operational guidelines leaves no doubt
that the delivery of this new national scheme for people with a disability establishes choice and
control at its very centrepiece. The NDIS legislation, passed in March, is the cornerstone of the
scheme and along the way, a Senate committee considered the bill and received over a thousand
submissions, I'm sure from many of you in this room.
All that work was done to make sure that the legislation was as good as it could be. The objectives
and the principles enshrined in the Act really enshrined choice and control, but not only that, make
sure that people with a disability have the capacity and are supported to exercise that choice and
control.
The NDIS rules give structure to DisabilityCare's operations and the rules are rapidly being put into
place. Getting them right has involved taking the c-... asking the community about how to develop
the rules so that they do reflect genuine choice and control. And, for example, participants will have
options for how they can manage their individual plans, self-managing their entire plan, including
their funding, using a plan management organisation to assist with the planning and/or funding
arrangements, or using DisabilityCare Australia to manage their plan on their behalf.
Having such options as these is a critical feature of flexible, responsive, choice based approach. The
operational guidelines will then give detail for the DisabilityCare team, the planners, the facilitators,
the local area coordinators. And they will use them every day as the scheme comes to life.
So, we still haven't seen the operational guidelines, but we are expecting them this week. And I see
from David Bowen down the front, a big smile, confident that that’s going to occur. The finished
structure will deliver choice and control for people with a disability. But it’s not enough on its own.
To bring choice and control to life for people with a disability, it also needed the commitment of
increased funding. And I'm very pleased that this commitment has been made by the
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Commonwealth, by Victoria and by other state and territory governments to fund DisabilityCare
Australia.
I do want to remind people in the funding process, of course, for the launches that it is 60 per cent
of the funding from the states and 40 per cent of the funding from the Commonwealth that will
enable the scheme to occur and services to be delivered. And for the full scheme, it is 52 per cent
from the Commonwealth and 48 per cent from the feds. So it’s very much a 50-50 partnership
approach from the state and territory governments and the Commonwealth.
And all of this that I’ve talked about gets us to the starting line. We now have to commit to the
thinking, the hard work and the refinement to make sure the scheme really works from here. We’ve
got to keep working on the negative society and community attitudes. We’ve got to keep building
the skills and capabilities of people with a disability and their families and carers. We have to keep
building the capacity of the disability sector, so that there is a high quality and sustainable sector
that is responsive and flexible to people's needs. And importantly, we have to keep building
DisabilityCare Australia so that it remains at the cutting edge, with relevant and up-to-date policy
approach to areas such as planning, assessment and quality assurance.
Additional funding alone does not build the scheme either. The Productivity Commission shone the
light on the underfunded disability system. And their report highlighted the consequences for many
people's lives of the scheme... of the approach that we currently have. And overwhelmingly, the
community and governments responded by agreeing that these consequences were no longer
acceptable. The Productivity Commission will again have an opportunity to shine a light onto the
questions of disability support in 2017, to alert and inform governments and the community about
just how efficient and effective the launches of DisabilityCare Australia have been. This will be a
timely review, given the commencement of the full scheme across Australia. So, there is general
agreement that DisabilityCare Australia is setting out to deliver positive outcomes for participants.
But, there are a number of areas that we still have a long way to go. Firstly, we have to remain,
through this process, ever vigilant that we are genuinely realising choice and control for participants.
Some people may argue that the market-based approach that underpins DisabilityCare Australia will
enable people with a disability to automatically have choice, and that, given that it is a market-based
approach, the market will automatically respond. But for a market to respond in this way takes time
to develop, and we’ll need the participants to really drive it.
Our experience in Victoria tells us that offering people choice without the necessary support to do so
just isn't enough. For individual families and carers, there can be hesitancy about new options. It
takes time - sometimes tentatively - to test them. It takes a belief that a new unknown way is better
than the old, known way. And it takes, I think, courage and bravery to set new goals and to try and
reach for new horizons.
The exercise of choice and control by individuals also needs to be fostered and supported by
government. And I think, for example, the initiatives being showcased at this conference is an
important part in highlighting some of how that can be achieved.
Systems and processes also matter. Choice and control in practice I don’t think is achieved through a
menu based approach. Having choice and control does not mean ticking a box on a form. It does not
mean having your choice limited to selecting from provider A or B. And it does not mean choosing
from a service type X or Y. We need to ensure that the young man, Ben, that I mentioned earlier, can
get the job he loves washing cars in a caryard and that’s not going to be an option on any menudriven approach that he may have to choose from.
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For genuine choice and control, people need a choice of supports and a choice of providers, and the
market needs to include a large range of options. Big providers, small providers, not for profits, for
profits, boutique, niche, but, most of all, flexible, innovative and responsive. So, over the coming
weeks and months and years, we need to check how people's experience of DisabilityCare Australia
is unfolding. Checking with participants that reasonable and necessary supports actually translate to
good outcomes for them. And I think the evaluation of the long-term outcomes for launch
participants, which will commence in 2014, is a really important part of making sure that it is
genuinely working for people with a disability.
The second thing I want to highlight is the responsiveness and the readiness of the service provider
market, which I believe, and I think everyone would largely agree with me, still has a long way to go.
The market and service providers also need support. They need support to provide innovation and
also that continuous improvement. This is so that the work that they do with people with a disability
genuinely realises the choices that they wish to make. The Victorian Disability Services Commissioner
recently consulted with over 250 service providers across the state and their feedback to him
highlighted, I think, both concerns and excitement about the scheme and there are a number of...
three particular comments I want to mention that just encapsulate some of that range.
Firstly, one provider said that DisabilityCare Australia is an opportunity for individualised care which
is what this provider organisation is all about. So, embracing those principles of choice and control
and individual, or self-directed approaches, is very exciting. And I think, obviously, commonplace for
some already and will become commonplace across the board. A second service server provider said
we may need to do things differently, restructure our current businesses and administration. The
need for new structures and business approaches, I think, is not a maybe, but actually a certainty.
And it’s great that this conference includes sessions on both days to help providers manage that
transition to the new world.
A third provider pretty much summed it up, saying about how the scheme will play out over time.
They said, “If people choose us, great. If not, then we probably shouldn’t be here.” Service providers
need to recognise that this once in a generation change for people with a disability, is also a once in
a generation change for service providers. And service providers need to do all they can to be
prepared for this exciting transition at this time. It is a time of significant change, particularly for
service providers providing services to clients in the launch area and, in the not too distant future of
course, across more broadly the country. And there are some protections being put into place to
assist in the smooth transition of the scheme.
DisabilityCare Australia's pricing is one of the ways that is happening. And, for the launch,
DisabilityCare Australia has set maximum prices for the high volume, high frequency support, such as
attendant care. Established benchmark prices for lower volume, low frequency items, such as Auslan
services, and required quotations for high cost items, such as customised equipment, prior to
approval of purchase.
In Victoria, the department had the opportunity to provide high-level feedback in about a 48 hour
period into the prices put forward by DisabilityCare Australia. And there genuinely is a real tension
between setting prices to support service provider transitions, while also wanting to maximise
choice and control for scheme participants.
And there’s obviously a lot of questions that we will be answering in the days and weeks ahead. But
what happens if somebody chooses a support that does not easily fit into that list? What happens if
a person chooses a support that fits within the list, but exceeds the price maximum that has been
10
set? And today, we do not know that answer, but we will know lots more once the operational
guidelines are in place and once we are underway with the scheme.
A significant challenge is to ensure that the lessons of participant experience are used to quickly
refine and develop and improve the scheme as we go, and we also need to ensure that, in this first
stage, that prices are equivalent to the expected costs of those service providers. So, in the short
term, DisabilityCare Australia may need to review some of the prices if they have unintended
consequences in local markets. In the medium and longer term, I think we all acknowledge that the
approach to pricing will need to change. Scheme participants will then have the freedom to exercise
real choice and control over their supports, when they are purchasing in a market based on price
and quality competition. Service providers need to be ready for that environment, that rewards
flexibility and true innovation in their service provision.
The third area I want to flag is the strategy and vision for the future disability workforce. It’s well
recognised that the workforce needs for DisabilityCare Australia will be very different, in both the
size and the scope, to the current workforce. Already in launch areas, DisabilityCare has recruited
extensively and as clients faze onto the scheme, service providers can expect the demand for staff
and staff who are more skilled to be able to work in an environment where scheme participants are
exercising choice and control.
Now, responsible disability ministers have agreed to develop a national workforce strategy, but we
need to speed up the progress with which that is happening. As we move away from a focus of the
immediate work needed to develop the legislation and the rules and the operational guidelines, this
workforce vision and strategy needs to become a very high priority. The NDIS, at its core, is about
people. People with a disability, who need some support, and those people who deliver the
supports. And we need this vision and strategy so that students entering high school now become
excited about being part of an NDIS workforce from 2016, as we roll out the scheme across
Australia.
So, I have tried to lay out a picture about where we are up to and what the challenges are ahead.
And, yesterday, Minister Macklin reminded us that no one in our country should underestimate the
significance of what we are about to achieve. While a transformation with people with disabilities
and their families and carers has been a long time coming, the start of the national scheme has
arrived with great speed.
The principles that underpin DisabilityCare Australia to promote choice and control are sound.
However, we need to monitor their implementation closely to ensure we have got evidence about
what’s working, about if and how the systems, processes and guidelines are influencing, directing or
limiting these decisions.
And, as we launch DisabilityCare Australia, there are some gaps between the desired future state for
people with a disability and where things will start. So while much work has been done to get where
we are today, there is actually a lot of hard work in front of us to get to the place where the vision
that we all have today matches the day-to-day reality of DisabilityCare Australia's participants.
So, I thank everyone who has been involved in this journey so far for the contribution and encourage
you in these first weeks and months and each year through the launch phase to be prepared to
review, to comment and to actually refine how this scheme is operating. This is transformational
change. It’s a time of great excitement and optimism and we have an ongoing... we need an ongoing,
collective commitment to the scheme’s principles and the hard work that got us to this point into
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the years ahead if we are going to genuinely achieve the vision for people with a disability of having
genuine choice and control over their supports and lives.
I look forward to working with all of you as we embrace the opportunities, work through the
challenges and make sure that we genuinely improve the lives of people with a disability, their
families and carers. Thanks very much.
(Applause)
MAURICE CORCORAN:
Thank you very much Minister, and it is great to see the perspective of a state minister who is
leading this work and has been a great ambassador for the NDIS, or DisabilityCare, here in Victoria.
As the panel members are coming up to stage for the next session, there are just a couple of
housekeeping things just to remind participants. Firstly, just to apologise around the live captioning
yesterday, where we had the captioning cutting off at certain times. We think it’s been fixed, that
issue, that problem, and so we are hoping the captioning will continue on. It was just dropping off
the net occasionally yesterday, so my apologies for that.
Also, just to remind you, in your conference manuals, there are evaluation forms that we want you
all to fill out, it is really important that the group hears from you on your evaluation of the two-day
conference. So really, really important if you can provide comment on that.
I’m now going to hand over to Fran Vicary to facilitate this morning’s panel discussion, titled ‘Choice
and Control - What It Means for Me’. Fran is the Chief Executive Officer of Queenslanders with
Disability Network. She also serves on the NDIS Advisory Group and the NDIS expert group for a
national approach to choice and control.
I also welcome panellists Melanie Schlaeger and Stella Young and Valda Bettens. Melanie has been
managing her own support since 2009 and many of you will know Stella, alongside me, as a
comedian, editor of ABC's Ramp Up website and disability advocate. Val Bettens is the mother of
eight children and manages her son’s disability funding through the South Australian self-funding
model.
So, please join me in welcoming Fran, Melanie, Stella and Val.
(Applause)
FRAN VICARY:
We are just (inaudible) the choice and control here, as you can see, and directing our support by
organising ourselves. Thank you, Maurice, for introducing us.
I think we have all heard yesterday and today about how choice and control can happen for a very
principle level, and in legislation and in international conventions. And as part of the expert group on
a national approach to choice and control for the NDIS advisory group, it was... my role was one of
the co-chair and a member of that group to try to provide some guidance.
So, what we decided to do was to produce some principles and questions and that might direct and
let us know if we were actually on track in delivering choice and control over viewing off the track.
So, my fellow panel members and I are today going to work through some of those questions to give
you an idea of how to kind of use some filters to see if we are actually delivering choice and control.
12
So, what we’re going to do is, at first I will ask the question, I’ll ask the person to start off the
conversation and then we will discuss it with the other panellists.
So, the first question that we thought we might explore is what is balance between showing that
choice at that support services’ therapies and equipment have an evidence base, ensuring
individuals have maximum choice and control? And how can DisabilityCare Australia ensure this
balance between choice and control and an evidence base? I want to... Stella if you could take us off
with that one.
STELLA YOUNG:
I actually think Mel might be better to start off with that one, having been someone who has been
managing her own support for quite a long time.
FRAN VICARY:
Do you want to take it away Mel?
MELANIE SCHLAEGER:
Nice way to pass it on, Stella.
(Laughter)
MELANIE SCHLAEGER:
(Laughs) I think that the balance starts with the person with a disability and their family
understanding what choice and control is. I think that is one of the key components, because often
in service land, we don't get a chance to understand what genuine choice is, because we often get a
spectrum of choices that we can... we can choose between, but we don't actually understand how to
make choices for ourselves. And that’s been the key learning for me in my journey coming from
using a service provider originally where it didn't have my own staff. I had to use what was given to
me.
And, I guess, that came down to me not having the ultimate choice, which now I do have, because
when I was with the service provider, I didn't get to choose who got to see me with my hair sideways
at 7 AM in the morning. You know, and maybe I didn’t like that person, or we didn't have... we didn’t
share the same values, which is intrinsically important to being able to provide good choice and
control, in my opinion. Because if somebody genuinely cares about who they are supporting, then
they will have an interest in facilitating that choice and control.
STELLA YOUNG:
Yeah, I think that is a really interesting point, Mel, about, you know, proper choice needing to be
from an array of quality options. Because, it is very hard to be able to choose the things that are
going to be able to reach your... allow you to reach your full potential if all of the options are a little
bit crap. So, I think making sure that the array, you know, the buffet of options that we have on the
table are actually going to produce quality outcomes, so that people can actually make the best
choices that they can.
(Applause)
13
VALDA BETTENS:
And that’s (inaudible) really hard, to let your child, (inaudible) understand this, let your child go with
someone that you don’t know if they actually like the child at all. And they’re very vulnerable. My
son especially, his communication skills, he talks really well, but he doesn’t really know what he’s
talking about, repeats (inaudible) and repeats everything and he’s very vulnerable. He’d go with
anybody and, so, he needs to have a staff member with him all the time (inaudible).
SPEAKER:
We can’t hear you.
MAURICE CORCORAN:
Just pull the mike near you.
VALDA BETTENS:
Oh, sorry. Is that better? I’ve got a really loud voice. Maybe it’s not on. Hello? Can you put your hand
up at the back if you can hear me? No one can. And I’ve got a loud voice, my children would be so
impressed. Oh, that is better. My children would say, “That’s good, Mum, they didn't have to listen
to you.”
But, like I was saying, before you could hear me, when you couldn’t hear me, being a parent and
having to let your vulnerable child go with someone that you don't know whether they like them
enough or not is a really difficult thing to do. And, as for, sort of, the letting go side of that, it is really
hard when you’ve got a carer that comes in that is provided by the service provider that you think,
man, you don’t even really want to be here.
I had one carer looking after my child, I got home from work and she had her friends in the front
room. And it’s like, my son with autism, where was he in the picture? Actually, breaking my
daughter’s lightbulb above her bed, but that’s another story. So, to get people that I feel
comfortable with, I need the choice, as a parent, to do that for him. As he gets older and he
understands more, he’s made it evident to me that he knows who he likes and so he needs to be
able to have people around him that he is comfortable with, that he knows what to talk about with
them, ‘cause he has certain stories for certain people. And you know how valued you are by Todd
when you have a story. When you come up to Todd and he instantly launches into the story he tells
you every single time, that’s when you know you have really struck a chord with him.
So, choice is so important.
FRAN VICARY:
Thank you. I think that that kind of links back to what Judith was saying about the person being the
CEO, if you like, of their life. They know what they want and when they are not getting it, they will
let you know. And that might be through telling you, it might be through writing you emails, it might
be through non-verbal signals, that we actually, as we deliver choice and control, we start to listen
to.
Yeah. I am going to just put the next question out there and if any of you want to jump in, just go for
it. So, what the next question I think will be good to lack at are: what system arrangements can best
14
manage situations when there are differing views about choice and control and the extent of
informal support provided by families?
STELLA YOUNG:
(Laughs)
VALDA BETTENS:
Oh, we’re all so keen for this.
FRAN VICARY:
I’ll start this one off. Well, I think about my own situation. When I first told my mother that I was
going to take my package and leave home, they had about 35 hours of support (inaudible). She’d
been doing 24/7 hours for about 30 years. She actually cried for six weeks. And you can see how
determined I am that I didn't actually cave to such pressure.
(Laughter)
VALDA BETTENS:
That’s impressive.
STELLA YOUNG:
That’s... I reckon my mum (inaudible) for six weeks. As, as...
FRAN VICARY:
But, I think in between the tears and her stressing, we actually put in place a system where I did
leave home and she did help move my furniture and she helped me with rent for years and years
and she was my best supporter. Because, she said years later, "Thank you for actually leaving home."
(Laughter)
FRAN VICARY:
“Because, I am now not an ageing, parent carer, you are independent.” And she worked with me to
convince my my sisters, we had a family dinner, we had them over, we knew it was going to be
tough. So, we formed the kind of concerted front, this was after the six weeks of tears. And she
became my best ally in the process, you know? Several years I lived independently, she was there
supporting it. So, I think that as we kind of find the tension between the family need for protection
of our son or daughter, and the need for the adult son or daughter to find their own feet, we need to
work through that softly and delicately.
VALDA BETTENS:
As a mum, I’ve got too many children, you’ve read in the thing, heaps of them. My eldest one’s 31.
I’ve watched three of my children - four now - leave home. I want the same abi-... I want Todd to
have the same option. I want Todd to be able to do what his brothers and sister have done and
move out and have a life of his own. But, I want it to be with his choice and his control over it, and I
want him to be in... to have support there that I know is right for him. I don't want him to be lumped
into a group home because that is the best option that someone can provide. I want him to have the
same choices his brothers and sisters have got.
15
And, as a mum, that means letting go. It doesn’t mean I’m going to abandon him, I’m going to be
there every night cooking dinner, probably. But I want him to be able to have that independence. I
want him to be able to do the things that everybody else has the option of doing. That is so vitally
important. As much as it tears at the heartstrings as a mum, and they are so vulnerable, they need
the same options as all their other siblings.
MELANIE SCHLAEGER:
And I think, just to finish off that point, I need to say that, yes, I have been self-managing my support
for the last number of years, but I still live at home with my family. And so, this moving out of home
business is still something that I’ve got to tackle. And I look forward to that quality relationship that
you can have because you want to spend time together. Not because you happen to see each other
every day because you live in the same house. You know, you choose to spend time together. Yes, I
probably will be there eating my mum's food once or twice a week, but she will want to have me.
STELLA YOUNG:
I actually... I left home when I was 17 to go to uni, ‘cause I grew up in a regional area where there
wasn’t much scope for me. My parents knew, even though my parents are a hairdresser and a
butcher, they knew that for me to have... to be able to reach my potential in life I was going to need
to be university educated and so they were very, very focused on how that might happen.
And I didn’t... when I moved away, I moved to Geelong, which, you know, now would have been a
good move. But at the time...
(Laughter)
STELLA YOUNG:
... At the time I found Geelong really challenging, because there was, you know, lack of access to
public transport. I didn’t have any... I hadn’t had any formal support services in place for my entire
childhood and that didn't change when I went to uni. I just kind of bumbled along the best way I
could. And, you know, I am still very lucky not to need any support services in my daily life. But now I
think things would be a little bit different and things would be a little bit easier, particularly if I
moved to Geelong.
But, it’s really, I think, very important that my family not only supported my choices... because I was,
I mean, I grew up in a very small town. I was born with my bags packed waiting to get out of there.
And I was very lucky that they supported that, but they also had very high expectations of me and I
think that has served me really well in my life, pushing me to just sort stuff out on my own. And I
think that even though, now, I would have access to more formal support, it didn't do me any harm
to kind of bumble along in the way that I did.
So, yeah, I guess there has never been any conflict for me about what I wanted and what my family
wanted. But, I can see that there are certainly challenges for people for whom that is the case.
FRAN VICARY:
And I think, Stella, you just actually hit upon a really important thing. Is that, actually, before you had
support, you probably learned how to exercise some control and in a community, kind of, gentle
way.
16
STELLA YOUNG:
Yeah, I was very bossy. I just learnt to be very bossy.
(Laughter)
FRAN VICARY:
You were obviously with people (inaudible), ‘cause people didn’t run off and leave you alone. I think
that when you have... when you use disability support, you actually learn very quickly to work with
people to get the best that you can.
VALDA BETTENS:
You have to, otherwise it doesn't work.
FRAN VICARY:
That’s right. And I think that something that we... that services need to actually loosen the reins a bit
and let people with disability, or their families, or those around them, actually take a bit more
responsibility. So it is almost like a shift of power that will actually facilitate real choice and control.
Case in point: if I want to get up at 3:30 in the morning to go to the airport for an early morning
flight, I don’t ring the service. I ring the support worker, who lives four blocks away and rides a bike pushbike - who is a morning person. Who can turn up at 3 AM with some form of clothes on and
actually assemble me into something which is decent to get on the plane in. And, I think that we
have, as we share a cup of tea and toast at 5 AM, kind of, you learn that there are ways to give back,
that get you more choice and control in the end. You need to actually... I think, Stella, you reminded
me of this. You need to give people what they need so that they can actually give you what you
need.
(Applause)
FRAN VICARY:
Now we’re going to move onto the next question, which is another tricky one. And how do concepts
of choice and control work equitably and fairly across regional and remote areas, and other
culturally and linguistically diverse communities?
VALDA BETTENS:
Man, that’s a big one. I think with remote areas, and I’m talking as an auntie, I’ve got a niece who is
in a wheelchair, got cerebral palsy, fairly high needs, and she lives in the Riverland in South Australia.
They have got a pretty good service there, but it’s the same... and it’s the same people, which is
really good for continuity. Not so good if you don’t like the same people all the time, or you don’t
happen to like that worker. There’s not as much choice. There’s not as many options open. And, as
with, I don't know how many of you here are from a small town, but, as with some small towns, you
get the workers coming in and suddenly the whole town knows all about you and you didn't actually
tell them. Which is really hard.
I think what we’ve got to work at is to appreciate that it is so different in remote areas, just as it is so
different culturally, with different cultures, that we have to show respect and have conversations,
talk to these people, work out how we can plan to do it in a different way. Perhaps we can plan
more family support that is not just given freely, which would normally be paid for. Perhaps there’s
other options. We’ve got to start thinking outside the square to make it equitable for these people.
They deserve the same choices and the same options as everybody else. And, somehow, we as a
17
community, we have to make it happen for them. So, service providers have to start thinking outside
the square is what I’d suggest and be willing to sit down and have the conversation with people.
Talking. If you sit down and genuinely talk and listen, you will find out so much about the person
with a disability and then enable them to have choice and control, just by sitting down and listening.
So, I guess what we’ve got to do is just be so sensitive to their individual needs and the fact that
being a remote location makes it like a double whammy. You’ve got a disability and you are in a
remote location.
Same with people from different cultures, they see... they have different cultures to what I was
brought up with. And you’ve got to be really sensitive to that. So, I think what we need to do as
service providers is have the conversations, educate ourselves as to what is culturally acceptable for
one culture to another and make sure that our staff understand that as well. We just need to
educate ourselves, folks, I guess and listen.
Service providers, please, if I can beg of you one thing, listen to the parents of a child, because you
know what, they know more than you do. University degree or not, sorry folks, but the parents know
that child. In a remote area, the parents know that child better than anybody else and they’ve
usually done most of the care themselves. So, we have to be mindful of who has got the expertise
with this and really make sure that they do get a fair suck of the sav, I guess.
(Laughter)
FRAN VICARY:
And I think in... another thing is that in really remote areas, you might actually need to sit down with
the person. I’m thinking about Queensland, because I grew up in the Gulf of Carpentaria and there
was nothing but cows and trees...
(Laughter)
FRAN VICARY:
...and the odd stockman. So, but, you know, in that situation, if I were looking to use a package of
support, it might be that my mum would say to one of the stockman's wives, you know, do you want
a job? These are the skills that you need to have. Will you come over for a couple of hours a day to
help me? And it is interesting, because my mum actually got that support from the Aboriginal
women who were on the property with us, who would take me with them when they went to the
lagoon, drag me along. And, you know, we need to actually have the flexibility to do things
differently. And to really deconstruct the way that we think about services’ workers and look at
who’s on the ground and how can we have a conversation with those people to get support
happening.
(Applause)
STELLA YOUNG:
I have often thought about the fact that I grew up in a regional area, actually having worked really
well for me. Because there was a lack of formal support, my parents and I, when I was older, kind of
built an informal community of support around us because there wasn’t anything else on offer.
There was no other choice. And I think that, you know, the fact that I grew up in a town that was
small enough to... it only had mainstream primary schools, I had no choice but to go to a mainstream
primary school, which was very beneficial. There was, I’m told, a committee of parents who tried to
stop that happening. It’s alright, I thanked them in my acceptance speech when I was dux at my high
18
school and smarter than all of their children.
(Applause)
STELLA YOUNG:
But, I think that growing up in that small setting without those kind of formal supports or, on the
other hand, also interventions was actually really beneficial sometimes, because it does teach you
how to build support out of not very much at all.
FRAN VICARY:
So, I guess, now this is where I’m going to jump off script. Just as we’re nearing our time, is there any
kind of final messages that any of you would like to give? (Inaudible) some of the key things that will
deliver choice and control on the ground for people with disability in their families?
MELANIE SCHLAEGER:
I think, as I alluded to before, first of all, is an understanding of choice and why it’s important. To
give you an example of that, I have a friend who lives in a nursing home and, so I was having a
conversation with her recently about choice and what it meant to her. And she said, “For me, choice
means whether I get to choose getting coffee, or tea or toast.” And I just thought that is a genuine
right that we have. It’s, I think, that’s a key thing in helping people to understand what choice is, so
that they can have genuine participation in the decision-making process. We need to have support
around creating a vision for our lives, because If we don't have that vision and those right people to
support us to be able to have that vision, then we can't really be in the driver's seat of our own lives.
And I guess, the final point that I would like to make is to be able, especially in terms of choice, to be
able to have a dignity of risk. And just to be... just to give you a quick example of that, recently I
decided in Sydney to go speed dating. But... and I had called the speed dating company before and
informed them that I was in a wheelchair. That was fine, or so I thought until we got there and there
was two flights of precarious stairs between me and my potential date.
(Laughter)
MELANIE SCHLAEGER:
So, I think my support worker and friend who was with me, my face probably told a thousand words
of how I was feeling at that point. And so she was like, OK, what can we do about this? So, she went
up the stairs and I waited down the bottom thinking, what’s she doing? Anyway, she came down
with four men.
(Laughter)
MELANIE SCHLAEGER:
Two to carry me up and two to carry my wheelchair up. Anyway, I thought that they were the bar
staff. Anyway, and so they carried me up, very delicately I might add, ‘cause I was wearing a dress.
And, as we got up to the top of the stairs, I said to two of the guys, "Oh, thanks so much for carrying
me." And they said, “You can do one thing for us, you can date us first!" (Laughs)
(Laughter)
19
MELANIE SCHLAEGER:
And that was... I don't have a problem with being in a wheelchair at all, but it encapsulated for me
the importance of choice. Because, I got to be not in my wheelchair for the two hours of that time.
And only the people that had put me on the lounge knew that I was in a wheelchair, which got rid of
that stereotypical judgement that we often have to deal with.
(Applause)
FRAN VICARY:
That’s a great story.
STELLA YOUNG:
I think if there’s, you know, if there’s only one more thing that I am able to say here today, I just
want to take the opportunity to be in this room full of people to urge us, as a sector, not to repeat
the mistakes of the past. We have an appalling history of abuse in Australia. An appalling history of
abuse of people with disabilities. And I think that we need to look back on that past with complete
honesty and openness so that we can learn from it. There have been cases of abuse of people with
intellectual disabilities in the paper in the last week. And I think that this is an opportunity, not only
to, you know, be all excited about improving support services, but to really make sure that we don't
repeat these mistakes, such as, moving people from institutions into community housing with the
same staff and the same cultures, just to create smaller institutions. Things like that we need to be
really mindful of and in exercising, you know, new system of choice and control, make sure that we
don't lose sight of the things that we have done badly in the past and seek to improve them.
(Applause)
FRAN VICARY:
In so much as on that, do you have any kind of insights into some of the possible safeguards that we
could use to prevent that kind of thing?
STELLA YOUNG:
I’ve tried to think about this question since you gave it to me, Fran, and I don't have the answer to
that. I don’t, you know, I haven't worked properly in the disability sector, I work in the media. So, I
hear all of these horrendous stories. And I don't know, I don’t have the answers to what the
safeguards should be, specifically, but we must make sure that they’re in place and that we’re all
able to make sure that we don’t repeat those mistakes.
MELANIE SCHLAEGER:
Can I add to that? I think that is where it is important to help people a disability build genuine
connection with the people around them. So, looking at genuine friendships. And I know that is
challenging for some people and maybe a concept that you’re sitting there and thinking it is not
possible. But think about the people that people have in their lives and what they do on an unpaid
basis. But, having said that, you can also use the paid support that you have, if they are trusted and
on the same page as the person, to be able to support them to create their own vision and if you
have a fair vision, then you're more able as a person with a disability, or at least their family, to be
able to be in control of managing those (inaudible), in my opinion.
STELLA YOUNG:
I would agree with that in terms of empowering people to exercise that choice and control in a really
strong way. I think that that... I think many people with disabilities become disempowered with, you
20
know, over the last, you know, however long we’ve been alive, really, as individuals. So, I think that
we are perhaps starting from a position where we will need some great empowerment and some
great culture building. Addressing the culture is really key.
VALDA BETTENS:
And I think we need to also build the capacity of the parents that are thinking for... Like, my son
Todd. If I gave him the choice of what would you like to do today, he would probably say watch the
traffic lights change. Which would probably keep him entertained for two hours, but there is not
much value in watching the traffic lights change. However, we do do it.
But, I guess - yeah, he can’t help it - I guess, what I'm saying is, empower the parents to know what
choices are out there. Empower the parents to be able to be part of the community, educate the
community. My son with autism is an amazing young man. He goes swimming, he swims with a
squad. There’s one squad of young adults in Adelaide, and a couple of teenagers. 24 of them or so
are enrolled in one swim club. They’ve all got an intellectual disability. They train twice a week and
they compete. And, so, he goes to that and he also plays football at an Aussie rules side. That’s
another story. Best tackle on the field, folks, shame it was his own team.
(Laughter)
VALDA BETTENS:
But he’s out there and he’s enjoying it and he’s having fun. He plays basketball on the Saturday
morning and he does indoor rowing on a Monday night. These things are accessible to our kids if you
know they are out there. They are accessible if you’re empowered by the service providers to think
outside the square and support you to do these things.
(Applause)
FRAN VICARY:
So, thank you. And I think the last thing that I would add is, as we move into this brave new world,
we actually need to let go of our ideas about people with disability, the role of service and to look at
how we can work together as a functioning community, where we have conversations around
kitchen tables about what service means and what choices people really want to make, like Mel with
the speed dating. You know, so that we actually are delivering real life choices, not some menudriven service system. Thank you.
(Applause)
MAURICE CORCORAN:
Thank you, Fran. Also thank you, Melanie, Stella and Val. Look one thing that... Just before we go off
the stage, there is a question that I’ve got to ask Stella. Not long ago there was discussion out in the
public about people having to contribute to a Medicare-type scheme for DisabilityCare. And a
certain person, a very high-ranking person within Myers came out and made a particular comment
about that and Stella heard that comment and then Stella went, she went fairly active, I think, on her
Twitter account and a few other things. And within 24 hours, the shares - the Myer shares - had
dropped substantially across the nation.
(Applause)
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MAURICE CORCORAN:
So, I think that’s just a great example of the journey that we have come on over the last five years
and the power and the force behind DisabilityCare Australia. But, Stella, can you just please pass a
bit of a comment about that little experience just before we finish?
STELLA YOUNG:
Yeah, sure. I have developed a new, very mild superpower. And it is creating some fairly major
changes in 140 characters, with my Twitter account. And it’s... I am really, really excited about the
potential to really change people’s... not only people's minds and present new ideas about disability
using social media, but also to create real change.
Yesterday, I was in a pub, a friend of mine was having a baby shower. And I’d been in the venue for
two hours and when they had booked, they had made sure that it was an accessible venue, there
was an accessible toilet, all that was fine. When I went to use the accessible toilet it was full of
painting and renovating gear. And so, the guy who had opened the door for me said, "Oh, oh, no, it's
out of order!" And I said, “It’s not out of order, it’s full of stuff. And, by the way, I am tweeting this.”
And took a photo and tweeted a picture of their accessible toilet full of their painting gear. And I
think it took them less than 3 minutes to clear it.
(Laughter)
(Applause)
STELLA YOUNG:
But, you know, they said, you know, "Would you consider deleting that tweet?" And I said, “No,
because you’ve cleared it now and thank you very much for that, I am very grateful that I can now
pee in your, you know, advertised and appropriate facilities. But, in fact, the point that you did it at
all reveals something about the culture of your establishment, and that is that you provide this
access, because you know you’re supposed to, but you don't really expect people with disabilities to
be patrons at your venue, and I think that’s really offensive.”
(Applause)
MAURICE CORCORAN:
Thank you, thanks, Stella. What a, yeah, great way to end the session. And we’re now going to break
for morning tea and then we’ll go straight to those concurrent sessions and we’ll return here for a
break for the session before lunch.
So, off to your plenaries.
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