TRANSCRIPT
FAMILY AND COMMUNITY DEVELOPMENT COMMITTEE
Inquiry into social inclusion and Victorians with a disability
Melbourne — 17 March 2014
Members
Mr D. O’Brien
Ms D. Ryall
Mrs A. Coote
Ms B. Halfpenny
Mr J. Madden
Chair: Ms D. Ryall
Deputy Chair: Ms B. Halfpenny
Staff
Executive Officer: Dr J. Bush
Research Officer: Ms V. Finn
Administrative Officer: Ms N. Tyler
Witnesses
Ms M. Baron, general manager, community solutions, people and quality,
Dr A. Sinclair, team leader, psychology and counselling services, and
Ms R. Stewart, strategy and service design, Independence Australia.
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The DEPUTY CHAIR — As outlined in the guide provided to you by the secretariat, all evidence is taken
under the provisions of the Parliament Committees Act 2003 and other relevant legislation and attracts
parliamentary privilege. Anything you say outside this hearing does not attract parliamentary privilege. We are
recording the proceedings, and we will send you a copy of the transcript when it is available. We ask that you
present for about 15 minutes, and for the remainder of the time we will ask questions. If we run out of time, we
have been asking others whether we can write to you and get a response if we have further questions. Please go
ahead.
Ms BARON — My name is Marcia Baron. I am the General Manager, Community Solutions and Quality at
Independence Australia. I look after the community services arm as well as the quality area and the training
business. Dr Andrew Sinclair is the Team Leader working in our psychology service, and Raelea Stewart is our
expert on strategy and service redesign. Independence Australia has a history of 57 years. It originally grew out
of the Austin Hospital, and part of that history was in and around people with acquired disabilities and what in
essence was the work that enabled people to go home post hospital care and live within the community. As part
of that history, Independence Australia has continued to do that work, but over the last 57 years it has probably
broadened the work it has done in terms of disability and has been working with a broad range of clients who
have a range of different disabilities, whilst maintaining a bit of a specialist focus on acquired or physical
disabilities. That is our expertise.
The organisation operates a range of different services. Most of our services are in home or in community, and
we will talk a little about that later. It operates as a social enterprise, so it has a commercial part of the business.
We also have a training arm and a group training arm, which underpins what is in fact our core mission, which
is really around working with clients in home.
In relation to the services we provide, the fundamental premise around our services is that in essence we work
with people in their communities. I will give an example of that. There is a statement in the sector that is
currently gaining a bit of traction, and in essence what we hear now is that people with disabilities are ordinary
people who want to lead ordinary lives. If I think about the work our organisation does, it is around working
with those individuals and getting a real sense of what that life is and then being able to shape what in fact it is
that we can offer so that they can get back to that life as closely as possible.
In preparing for today and thinking about social inclusion, the focus we have is that some of the work we are
doing is around underpinning what the family does. We work with a range of different people, and in our
experience in the breadth of different cultures, families and family structures we work with there are a range of
different things that happen, so the reality about social inclusion and how possible it is for people to re-engage
with community comes down to what is normal in that family, what the cultural issues are in that family, what
the family norms are and what the engagement was with that community before the disability was acquired.
I will give some examples. We work with people who have never left their bedroom because in that family that
is not possible, so some of the work we do in providing care in that home is around engaging with that person in
a more palatable way, but we are unable to get any traction on shifting that arrangement. We also work with
people who get on with their lives, go to work every day and engage in a number of different ways, but
fundamentally our view is that, whatever is happening in that family, wherever we can actually make a
difference we need to be working with that family and shaping our offering and how we support that family in
order to make that happen.
As people who do not have a disability, when we think about the community there are things we take for
granted. The thing we mostly do not even think about is the spontaneity we have around the way we run our
lives. It is normal for a person to catch up with friends, go on a picnic, go to a film, join a club and get a job —
all those things. If you are a person with a disability or if you acquire a disability, there is an added dimension to
that because, whatever the activity is, there is an element of planning that is far greater than anything we can
conceive of, so there is no spontaneity. There is a sense of needing to prepare well in advance in order for that to
happen. If you have good family networks and a good structure and supportive arrangement at home, some of
that happens with your family and at home. If you have a very small family and your networks are much
smaller than that, it does not happen as easily, and you need a lot more support from a service provider like
ours. Planning is one of the key things that I would suggest influence how involved and how engaged in the
community a person is.
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Regarding some of the ways the organisation has responded to that, some of the work we have done is that we
have started to think about the services we are offering and how they are designed to respond to these things.
The organisation and our service offerings have been in and around trying to address issues as they arise from
the families we work with or the people we work with. An example of that is our Strengthening Families
program. I know that many moons ago there was a funded arrangement that was called that, but we have
borrowed the title. When we sent our support workers to work with a client, a number of carers and families
were saying to us, ‘Hey, that’s really great. We got a bit of training on how to do bowel care and how to do a
PEG feed, but once we left the hospital and came home we had forgotten. We’re not confident. We would like
to do that training’. We started to think about how to address this and how to actually train up family members
to feel a bit more confident with the nature of the work and support they need to provide to their loved ones, and
that is where the Strengthening Families program grew from.
Of course like many things it is not a funded service. We got some trust money and some donations and set that
up, and we are now running it as a pilot. We have been working with people out of our peer support group
network and also with Carers Victoria in trying to set up the content and message what it is that we are offering
people. That is something the organisation is doing around addressing the impediments as they are being raised
by the people we are working with. There are a range of other programs we are offering. I have a whole lot of
detail around the different programs, which I will skip because you can have a look at it. There are a range of
other programs we are looking at.
I suppose I just wanted to also talk a little bit about some of the work we do with younger clients who have
acquired disabilities through a range of different things — and some of it, more often than not, which is in the
media, is risky behaviour. In some of that work and how we have been going about it, the bulk of our service
has been around providing what in essence is disability support work in home. The nature of the work that our
support workers do is mainly dealing with physical needs, the technical stuff, when a person may need the
whole personal care suite. They might need assistance to get out of bed, they might need assistance to cook a
meal. They may need assistance to actually do far more complex things, like bowel care, PEG feeding,
suctioning and a whole lot of other bits and pieces which are fundamental to their wellbeing.
When you acquire a disability and you are in that transitional stage — you have left the hospital but you are in
the Talbot, doing your rehab and getting ready to move home — some of the things that we are hearing from
our clients as they get home is that in essence they go through that process that they have acquired a disability,
but they have also acquired a whole range of other things, which includes grief, and of course there is that loss
of what was once their life. There are all of those things, and for us, what we see is also a loss of confidence.
Some of the work that we do is we have a psych service, and that deals with the individual stuff. It also deals
with the family stuff. In terms of what I think can be offered in a far more powerful way is our ability as a
service to be able to work immediately with those peer groups.
The DEPUTY CHAIR — Maybe we could ask you some questions.
Ms BARON — Yes, sure.
The DEPUTY CHAIR — We are looking at what government can do to fund, define and measure in some
way social inclusion of those with a disability and also what sort of things we can provide in terms of
recommendations or policy. It is good that you have given us this, and we did get some background from the
secretary; they are good at doing all the research. So maybe a bit more in terms of what you see, even perhaps
picking out a particular group — say, those who have acquired an injury later. Are there certain things that are
either lacking within the current system or perhaps — —
Ms BARON — What I think is lacking in the current system is that ability to be nimble. There are two
examples that stick in my mind. We work with a man who has acquired a disability and who ran his own farm.
He now has high service needs. He has 24-hour care in his farm, in his home. We have tried to build around
him, through our service model, support for his physical needs. But in essence this man just wants to get on to
manage his farm. He would like to get back to manage that farm. We have exhausted our ability in terms of
providing him with a workforce for his physical needs. What we have not been able to do is to flip that around.
The service model that we have at the moment looks at, ‘Well, here is the level of service that providers offer.
We can offer you this suite of things’. In essence this man really needs farmhands who can also kind of do the
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extra things he now physically needs. But we have not been able to do that yet. There is a whole lot of other
modelling and work we need to do in order to make that happen for him.
The DEPUTY CHAIR — Rather than supporting the person’s physical needs, you are talking about support
in order for that person to continue to work or earn an income?
Ms BARON — Absolutely, because that was his life — he ran his farm. We can put in some of the
technology and equipment he needs, but the reality is that most people need a companion, a just-in-time
companion, to be there should they need something, but most of the time they may not need something.
Mr MADDEN — In that transition.
Ms BARON — Yes.
Mr MADDEN — It is a transition period, I assume — —
Ms BARON — And even before — —
Mr MADDEN — Which may never be complete, but it is still a transition.
Ms BARON — Yes, that is right. In the current industrial environment people either work in disability.
There are a whole lot of professional and technical skills that disability workers have, but there is also this other
need for a just in case. We do not have a response for that in the sector. It may be happening in a deregulated
way; it may be happening because you go to your neighbour or you ask your family — —
Mr MADDEN — Or a good friend volunteers for some of it.
Ms BARON — Yes.
Mr O’BRIEN — Just on the farm, there are a lot of farmers who do not have a disability but who are in the
exact same problem with an ageing environment; there is no return through the farm gate, and they have no-one
to take over the farm. There are big issues. Obviously your individual farmer has very specific needs; I am not
discounting them — —
Ms BARON — Yes, sure.
Mr O’BRIEN — But how do we step up? Part of it is to actually look at the problems in the farm sector in
general in terms of rural labour and companionship and isolation, which are very common. Everything you have
said could apply to a lot of people. I know this person has very specific needs. Therefore when we look at a
problem sometimes there is a broader solution of greater social cohesion and accessibility, but specific tailoring
needs to be added to that. Can you just think about that example.
Ms BARON — The challenge is how do you deal with what in essence are the individual requirements on a
case-by-case basis but provide a structure to enable us to be able to almost customise.
Mr O’BRIEN — Yes.
Mrs COOTE — Can you talk more about formalising? When someone has acquired a disability or disease,
they have a friend network that is outside — perhaps it is people from the footy club or some other
organisation — that people who are born with a disability do not have to the same extent. Are you talking about
formalising that group of people to know how they can help the person with a disability? Many of these young
people have never come across a disability in their lives, so they do not know how to deal with their friend who
was running around on the footy field last week and is now in intensive care. They do not know how to deal
with this, particularly as they come out of intensive care. Are you talking about formalising those people? That
is something that perhaps the government could do — have some programs that help to harness those groups. A
lot of them disappear; they lose their friendship groups. Are you talking about having a formalised method —
government support or a program — that in fact keeps that friendship network there and keeps them engaged so
that the person has the same friendship network they had prior to attaining the disease or the acquired brain
injury or disability?
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Ms BARON — That is right; that is what I am talking about.
Mr MADDEN — But I suppose even then it is a fluid structure, is it not? You cannot necessarily say you
have care for 24 hours a day or 12 hours a day.
Mrs COOTE — This is more about the friendship group; this is over and above — —
The DEPUTY CHAIR — This is about inclusion.
Mrs COOTE — This is not learning how to do the PEG. It is more about having to actually keep the
friendship going, like talking about your music or the friends you knew or the trip you have had or ‘Can you
come on a trip?’.
Mr MADDEN — Some facilitator; is that what you are talking about?
Mrs COOTE — Not really.
Dr SINCLAIR — It is interesting how our psych service ended up at IA. It is unique in Victoria.
Psychology funded through Medicare is a very clinical approach; you have to be diagnosed with depression or
anxiety to get treatment. But if you acquire a spinal cord injury and your whole life changes — you might be
interested in the fact that Robert Rose had a spinal cord injury. At 22 he was playing for Footscray. His dad,
Bob Rose, was a famous coach and player for Collingwood. I think he was also playing state cricket. Then he
acquired a high-level spinal cord injury — quadriplegia — and was required to move home, and Bob Rose
cared for him; he became his primary carer. When Robert Rose died, the Rose family came to IA and said,
‘We’d like to start a foundation and raise some money in his name’, which they did. They said, ‘The first thing
we want to put that money towards is a family counsellor’. We had enormous resources. The Collingwood
Football Club and the whole football community came around and supported us through that transition, and we
still struggled. It was really difficult; the role changes and everything else that was involved with that.
They wanted to help fund a family counsellor to work with families after they have had a catastrophic injury to
help them with all the role changes, not just the grief and loss. We now know in positive psychology the
ingredients in wellbeing. Social inclusion includes having a purpose, having meaning, having the opportunity to
engage in activities where you have a sense of achievement and accomplishment and the opportunity to have
positive relationships. We know that these are the main ingredients involved in wellbeing and happiness. When
suddenly you are young man who cannot walk any more, there are a huge amount of changes: the idea of
family, relationships, if you were injured and your previous job was as a plumber or something and you cannot
go back into it. It does not necessarily fit into the model that you have depression and you get 8 to 10 sessions of
Medicare.
We are lucky in that we are still supported by the Rose Foundation and other philanthropic organisations. We
are able to provide the mental health support under Medicare, but then additionally we have a range of
programs. We have peer support groups, we run assertiveness classes, communication classes. I run a pain
management program. Pain stops people from getting out and doing, and the body is not supposed to sit still all
day. You want to go to the footy one day and you wake up and your pain is so severe that you just have to take
strong medication, and that is not going to help you in terms of getting the opportunities for engagement and so
on.
A lot of our work is outside what is funded through traditional funding models. It does not fit into it. We are still
looking at how we can make our service sustainable, fully funded through various funding sources. At the
moment there is still a big gap. We can provide the Medicare-funded sessions because people with disabilities
experience depression at higher rates than other people, and we can look at ways of doing that as well. People
with spinal cord injury often struggle to attend sessions regularly, because they might have a pressure sore
which keeps them in bed, they might have a bowel or bladder accident that morning because of something and
they cannot make it to a session. We have been funded by beyondblue to develop an online treatment model for
people with spinal cord injury. We are looking at those kinds of options as well. I know you mentioned ICT
before; we are looking at using those kinds of technologies to improve access to counselling and support. But it
is the peer support model, strengthening the family model and helping a person with a disability to learn those
things. What is their purpose now? What can they stand for in the face of what has happened to them? How can
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we help them get back on track in terms of dealing with their new normal? That, as I say, can take quite a bit of
support.
It is very different for people who are born with a disability. We developed a vocational support program a
couple of years ago because we were finding a lot of people who are born with a disability have very different
socialisation. They are often not told, ‘What do you want to be when you grow up?’, and lots of conversations
that we have; they are often just congratulated for being out and about and being cheerful. When they get to 20,
the idea of getting work and all of that is a huge challenge for them. We looked at developing support programs
that help them get up to the level where they are ready to engage in mainstream vocational support, like WISE
and a few of those agencies. They were going into them and WISE was working with them for two years and
they were not being employed at the end of it, because there is a lot of work to do. So there are differences
between acquired disability and people born with it.
I think there is a lot that psychology can offer. There is a lot we know about positive psychology. Positive
psychologist Martin Seligman in his book Flourish talked about the ingredients that are required for us to have
health and wellbeing. There is a lot of research that shows it, and there are all the barriers we talked about
before. Social inclusion ticks all the boxes in terms of health and wellbeing. Part of the reason we have such big
brains is that we need to know how to interact socially with each other and all those sorts of things. For some of
our clients with a physical disability, the only people they interact with are either family members or paid
workers.
I work with our staff who work in our shared supported accommodation units and I think they work in one of
the most complex social worlds there is. It is someone’s home; it is their workplace; they have three, or up to
six, people who have not necessarily chosen to live with each other but are living together. You have families
coming in as well.
The DEPUTY CHAIR — You run some of the residential places?
Ms BARON — We have. The houses we operate in are closer to what in essence is an ISP-type model. Even
though we are still currently getting a little bit of block funding — and that will be phased out — they are a
mixture of either TAC-funded clients or DHS-funded clients. Because that particular client group came out of
the old Yarramee; it is their house. They organise the gardening, they chip in, they take their meals individually
when they want to and the staffing group is built to support that to happen. But even within that environment
where you can have as much individual arrangements as possible there are still some things they have to share
and nut out.
Dr SINCLAIR — As an example, it was so complicated when I was sharing a flat with people if I had to,
say, get up early the next morning for an appointment and it was not my turn for the shower, I would go and talk
to my flatmate and say, ‘I need to have the shower tomorrow, I have got so and so’ and you negotiate it. But in a
group house the person who wants to get up early next morning will go to their team leader and say, ‘I need to
get up earlier’ and then they will shift things around and the other person with a disability — —
The DEPUTY CHAIR — Might not be so happy about it.
Dr SINCLAIR — And they have not had a chance to talk about it. It gets very complicated when there are
paid workers. This happens within family units as well. The whole family have to do different things at different
times and that impacts on the person with a disability. Paid workers might be coming in as well. There are lots
of examples where I have worked with young men who have had a spinal cord injury. They have, say, gone to
the footy and afterwards their mates say, ‘Let’s go out for dinner’ and they have to say, ‘I can’t, I’ve got to be
home at 9 o’clock because that is when my worker comes to put me to bed’. We do not have the flexibility at
the moment to call up and say, ‘Can we have someone to put me to bed at 11?’. If they have not got a family
member who can be flexible enough do that they have to go home then; otherwise they stay up all night.
The barriers are that the model that we provide workers doesn’t support client flexibility. Hopefully with the
NDIS, how that will work — it is still developing — and whether there will be more flexibility.
Ms BARON — And the profile of the workforce. For young people it is the profile of our workforce. It
tends to be middle-aged women who are doing this work and therefore you get young people who might go to a
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club, hang around the bar, listen to loud music, do all of that sort of stuff and we are constantly dealing with
those issues of ‘I am beyond the bar. I just want to go’ from your workers.
Mrs COOTE — What about relationships? How do you deal with relationships that people want to form
and how do you encourage that? That is another area. They are obviously health professionals, but relationships
are not usually dealt with by health professionals. How do you encourage your young people to form
relationships of an intimate kind and the sorts of ongoing relationships they want to have?
Dr SINCLAIR — I think that is an issue for the whole community, even with Abbott’s relationship
vouchers. There are a lot of skills involved in successful relationships. If your parents and the people around
you had successful ones and you saw that model you can pick up a lot of them, but a lot of people do not have
those. When you bring into that a spinal cord injury and there may be a loss of sexual function, changes in roles,
masculinity and femininity and all those kinds of things, there is a lot to unravel.
There is a sexual health counsellor in the Talbot they get to work with a little bit and then they go home, but the
research shows that more than half of the first sexual activity for a person with spinal cord injury after their
injury is with a worker. Obviously we talk a lot about boundaries and it is very complicated. A lot of our
workforce is isolated. We are putting people into their homes and our staff might not have a lot of contact with
us. There is a huge amount of that sort of work. Again, it goes to the fact that that is not funded in any sort of
model. They want it to come in — —
Mrs COOTE — Should that be talked about? As I said, we are making recommendations. Is that something
that should be highlighted or touched upon in our report to say that this is something that needs to have greater
investigation — —
Ms BARON — Yes, it does
Mrs COOTE — To see how we can do this better than is currently being done, which is not great?
Mr MADDEN — You mentioned young men a few times and I suppose it comes back to some of that. Is it
that young men are the high-risk takers so they are often the ones who acquire the injury.
Ms BARON — Yes.
Mr MADDEN — Am I right in saying that you have got a significant proportion of young men in those
circumstances?
Ms BARON — Much higher than young women.
Dr SINCLAIR — Yes. The other thing that goes along with that is that often with these young guys it is the
way they deal with their emotions. They get angry, they jump on their bike and go for a ride and ride it out. If
you become a quadriplegic you cannot do that then and they have often lost the way they regulate — —
Mr MADDEN — Express a whole lot of things.
Dr SINCLAIR — Yes, exactly. There are an enormous amount of changes that occur in those
circumstances and our service, with the support of the Robert Rose Foundation, has been working with people
when they get back into the community. They get mental health support, primarily psychiatric, in hospital. It is
really about preventing suicide and that kind of thing. The clinical mental health occurs straight after the injury,
but it is getting back into the community and all of the challenges associated with that.
But humans are very resilient as well and there is a lot of research that shows that two years after injury a lot of
people who have had the opportunity of supportive families and the opportunity to be included in their
community and get out there experience a level of wellbeing similar to before their injury. It is a positive story
as well. We can really get to that point and flourish with support, but there are some barriers that we are looking
at.
Ms BARON — If I could just add a little bit to that on the question around what work we need to do on the
issue of people’s sexuality and how much supporting we do, how we build some skill in our workforce to
enable that to happen in a positive way, with most of the providers in my experience, because we have been
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trying to develop policy ourselves around what is it that we can and cannot do, there is not any documentation
so we are hard-pressed to get a sense of what the sector is doing around that issue. If there are things that are
happening, they are happening on an individual basis and they are working within a particular family or
individual and there is nothing we can get anywhere.
Mr MADDEN — People do not talk about these things too much?
Ms BARON — They do not talk about these things. When I first started working with the organisation I
found out by accident that we were assisting a person to visit a sex worker. We did not know that was
happening. We did not know until we changed workers and put in a new worker. The new worker rang us up
and said, ‘Do you know what I had to do last night? I did not know what to do. I had to drive’. We had not
trained the person. So there is all of this. That is one of the things that the sector has not worked out how to do.
Mr MADDEN — How to manage?
Ms BARON — Yes.
Mrs COOTE — We have to have some more open conversations because these are all natural issues and we
need to have some more open dialogue about how to do it better.
Ms BARON — Yes.
Dr SINCLAIR — I have a case at the moment where a person with a high-level disability in shared
supported accommodation wants to ask a lady who also has a high-level disability and lives in a different shared
supported accommodation in a different organisation to marry him. Even with the families involved and the
different agencies we have not been able to find a model where they could live together. There is not really
consideration being given to that situation and how it would work. I think even the NDIS is looking at this as
well. It will not fund someone for 24-hour home care in their own home, but it could possibly provide funding if
you had two or three people who came together and had a shared house and they could join together. Maybe
with some flexibility in funding arrangements going forward we might be able to get better at supporting people
in that situation to be able to live together and to marry.
Mrs COOTE — If I can encapsulate this, you are talking about people, usually young people, who have an
acquired brain injury or a physical disability
Dr SINCLAIR — Spinal cord injury.
Mrs COOTE — Spinal cord injury. It is to harness the energy that had been around them with their
friendship groups and the natural inclinations they have as a young person to be able to go forward effectively.
Forget about their health issue; that will be taken care of. This is something that is much more intangible. You
believe, maybe, that there is an opportunity for government to be encouraging of that in funding or recognition
or support or courses or something. Is that a fair enough assessment of what you would be suggesting
Ms BARON — Yes.
Mrs COOTE — Each one of those individuals’ relationships with their friends or their interests would be
different, so there has to be some flexibility in the middle of all of this. But then obviously there is a pocket of
knowledge that is being lost at the moment in the sense of helping that individual have a happy and productive,
socially inclusive life; is that right?
Dr SINCLAIR — Yes. Our organisation is funded to get people up in the morning and then put them back
to bed at night, but it is what happens between those times and how they are supported in doing that. There
needs to be some care during that day, but who provides that? Whether we can skill up families to do it or
friends or — —
Mrs COOTE — Or skill up the friends — that is a good term — because the friends probably really want to
help but do not know how to.
Mr MADDEN — Yes, that is right.
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Dr SINCLAIR — Yes, exactly. It can be fairly overwhelming.
Mr O’BRIEN — That segues to this. What I did is write down a proposition, because your farm example
raised in my mind some very real questions in a broader sense. Just by way of background, I have been
looking — and it is in the public domain — at rural isolation issues generally, particularly at subdivision issues,
suicides, tensions about the right to farm and how much you subdivide and how you subdivide. Mr Madden
would be well aware of these old debates in his former role. What I would put to you is a proposition that how
we can consider some of these issues in certain cases is that certain disability and social inclusion issues can
raise in an acute sense — particularly, say, in rural areas — social inclusion issues that occur in the entire
population. Farmer suicide, for example, or farmhand problems because there is not enough money coming
through the farm gate, which is one of the main complaints. Therefore, in a government sense, some
recommendations such as greater rural companions may need to be looked at and funded, or looked at and
considered, in a broader governmental sense — from, say, the acute lessons that have been learnt from them to
the policy reform that might have benefits for the entire community. Is that something that maybe even the
NDIS focus or whatever can assist us with?
Ms BARON — It would help. Certainly in some of the dialogue that I have been having more recently with
NDS, on the structural issues around the awards, there has been some feedback and conversation across the
sector that some of the things that people want to do, which would improve their choices and lives, are difficult
to do, given the employment framework. For example, if you wanted to go out for the day and you were going
to spend the day at the beach, if you need someone with you, you are going to have to change over your
staffing; otherwise it is going to cost you more. Going out becomes harder for people in some settings because
there is a shift change at 4 o’clock and you have got to go back to the house to change. Freeing up some of that,
so that you are not undermining pay and conditions but you are enabling people to actually get on with the
normal activity of the day, are some of the things that are being talked about in the sector around making those
things happen. I think I am answering — —
Mr O’BRIEN — No, you are. It is a concept, summarising the evidence that I have heard with my
background knowledge. I will just further consider it, and perhaps even for that farm example I am happy to
receive more details of the specifics of the case study, if that is a matter you could provide us with information
on.
Ms BARON — Yes, absolutely.
Dr SINCLAIR — Part of it might be funding for the infrastructure that is required to allow people to be
more flexible and managing their service — being able to log on and change their own timetables and shifts. At
the moment they have to call our rostering department and say, ‘I want a go to this, so can you change my
3.00 p.m. to 5.00 p.m.?’. Then we have got to call and change that around, so it is quite a step. But if they were
able to log on and see their own carer availability and make those changes themselves, it would make the
system more efficient and flexible.
Mr O’BRIEN — More nimble.
Dr SINCLAIR — But it requires the development of that. The software programs are not really available
for that. We are looking at doing it — having client portals and so on — but it requires quite a lot of
infrastructure funding, which is not covered in the unit pricing we get funded for, so it is also about how to do
that. For people with disabilities, particularly people who have acquired a disability, their iPad and iPhone are
how they control most things.
Mr MADDEN — We have heard a fair bit about where technology allows people to have greater access and
more choices, but in a sense things have not caught up with that or complemented that, so that is probably
something we could also talk about to find the right way to complement the technology that already exists in a
way that complements the lifestyles of people. It is the other way around at the moment.
Ms STEWART — Being fairly new to Victoria and the disability sector, one of my observations is that a lot
of the research and development in the disability sector, particularly what Independence Australia undertakes, is
funded through philanthropic organisations or through trusts. Moving forward, you have asked a question
around what the government can do. I believe in the transition to the NDIS the Department of Human Services
has the potential and a great capacity for support.
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Family and Community Development Committee
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With research and development and programs such as the breakaway holiday experience that is written about in
this document, when people with disabilities are faced with a long list of options and have a conversation with a
planner around what their goals and outcomes are, it comes back to the point around choice. By modelling
different ways of how to maximise the opportunities available, they can then grasp getting to a normal way of
life. At the breakaway holiday experience we had clients and people who had not taken holidays for the last 10
or 12 years.
There are fears and barriers around even the continuity of travel access, being able to know they can get on at a
tram stop and then get off at a tram stop 1.2 kilometres away. Access to information and mobility access are
quite significant impediments, and you have probably heard that before. My notion is that research and
development can develop new ways to maximise funding opportunities and streams, where the pilot programs
and test models show a different way for people to engage in as near a normal life as possible.
The notion is around who their companion or support worker is. When they go to a community and go on a
holiday, that community can embrace them attending, visiting and being part of that community in a way that,
when they go to a restaurant or a coffee shop, they know they can go there with certainty and not just as a single
person but as a group of four or five people with disabilities in wheelchairs. They can go to a restaurant and not
feel as though they have to explain or plan 24 hours ahead. As Marcia mentioned, the real challenge is that they
have to do so much significant planning. The notion is around how you invest in pilot programs that show
people with disabilities that there is a way to maximise engagement in as near a normal life as possible.
The DEPUTY CHAIR — Thank you.
Witnesses withdrew.
17 March 2014
Family and Community Development Committee
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