TRANSCRIPT
FAMILYANDCOMMUNITYDEVELOPMENTCOMMITTEE
Inquiry into social inclusion and Victorians with a disability
Melbourne — 3 March 2014
Members
Mrs A. Coote
Ms B. Halfpenny
Mr J. Madden
Mr D. O’Brien
Ms D. Ryall
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
Witness
Associate Professor P. Ramcharan, Centre for Applied Social Research, RMIT University.
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The CHAIR — Good morning. My name is Dee Ryall. I am the Chair of the committee. Could you state
your name and that of your organisation?
Assoc. Prof. RAMCHARAN — My name is Paul Ramcharan. I work at the centre for applied social
research at RMIT University.
The CHAIR — Thank you. We appreciate your time today in coming to this public hearing. I remind you
that all evidence taken by this committee is taken under the provisions of the Parliamentary Committees Act
2003, attracts parliamentary privilege and is protected from judicial review. Any comments made outside the
precincts of these hearings are not protected by that privilege. All evidence given today is being recorded;
however, we are not being broadcast. Witnesses will be provided with a proof version of the transcript within a
fairly short time frame after the hearing. Could you give a 15-minute overview of your presentation for the
committee, and then we will ask questions.
Assoc. Prof. RAMCHARAN — Thank you very much. I got this presentation down to 15-and-a-bit
minutes yesterday — there is so much to say. I hasten to add that a lot of it is at the level of ideas, so hopefully
you will take that into account. I have called it ‘Social inclusion: Making it real, making it meaningful’. I think
the subtext to that is that it is the journey that counts for people with a disability. I have split it into two parts, the
first of which is, ‘What have we learnt?’ — what does the evidence tell us? The second is: ‘What is in
prospect?’ — what are the ideas we might work with in the future?
Looking then at what we have learnt in the past in these areas, there has been about 50-year history and a
concentration on social skills development and behavioural change — it is probably 150 years if you look
historically — in terms of legislation and policy. Whilst there are merits to it, what we have found is that the
outcomes are that the opportunity structure for learning is significantly important. For example, people in
institutions had many things done for them, so they did not gain skills in areas, such as doing the laundry or
making their own meals and so forth, whereas in community settings you find that the opportunity structure
differs, and the evidence shows that there is a plateau after a time in terms of what people accomplish. The idea
is to create opportunity structures to produce social inclusion.
The second thing is that unfortunately skills development has become part of the whole of life — it is not 'for'
life — so we tend to find that people are learning over a period of life in segregated settings, but not graduating
into wider society. There are real issues here — for some people, not all — about that graduation. It assumes
that graduation model.
The other thing is that the focus on changing a person’s behaviour is often problematic, because if you focus on
the behaviour in the here and now, you miss the reasons why that behaviour is actually there. When people
protest and they resist the lives that they have and they have a restrictive practice placed on them, it does not
take into account that the production of their behaviour has been historically produced in the way that they have
been treated.
If you look at a worst case scenario of this model, we have a pernicious cycle — what I would call modern-day
institutionalisation — in which you have a model that is based on equality of opportunity, and it is the people
who are least able on the basis of merit to succeed who are placed in a separate category and segregated. Once
segregated into that category, they then have to graduate, which they cannot do, so they are stuck in the category
over a lifetime. If stuck in the category over a lifetime, they begin to show the protest and resistance to their
experience, which is then prevented by having a restrictive intervention. What you find in the end is that people
are retired early at the age of 50, and you find a lot of younger people in that sort of care.
The things that we can learn here are: do not segregate the person and do not operate on a graduation model;
create the right sort of opportunity structures and ones that are meaningful in terms of life’s development;
develop skills meaningfully 'for' life and not 'as' life; and create skills in real-life settings whilst reducing
restrictive practices.
We have also relied to some degree in the past on normalisation and social role valorisation theory. These
theories were based on the idea that you give people as normal or socially valued a life as possible, but they
suffer from the problem of what is normal and what is socially valued.
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The other thing that was problematic was that it set unreasonable expectations around what people could
achieve, so expectations around housing and education were quite extreme in terms of their difference from
what people were experiencing. What they did not do in these theories is show the plans, the strategies and the
targets for how to move people into ordinary lives. They claimed that there was a need, but did not show it.
Those theories were important in the closure of the institutions, the remainder of which need to be closed. It has
meant that many people have been left in a different queue. Not many of us would queue up to live in a
community residential unit — we are not joining that queue — so we have to say that there are limitations on
the choice of some people where they have parallel lives or lives parallel to those of the public at large. Where
those lives are parallel, you have segregation; where you have segregation, you cannot have inclusion — they
are the antithesis of each other.
The other point about normalisation theory was that it was service system orientated, and yet what we do know
about social inclusion is we have to look beyond services — and I will come to that at the very end. The ideas
about how services support must be about how they support people in communities, not how the service acts.
We cannot evaluate the outcomes on the basis of whether the service is successful; we have to evaluate them in
terms of what it means for the person in their communities, their natural supportive networks.
We have similar theories from O’Brien, the five accomplishments, which established important principles:
community presence; relationships; choice; competence; and respect. Once again, though, these theories were
very much couched in terms of service delivery. If you look at the evidence from research studies now, what
you find is that there have been a lot of changes in things like what people eat and when they go to bed — ‘Oh
yes! We have taken Johnny or Jane down to the leisure centre twice this month’. The problem with that has
been the production of what I would call, and other people have called, a leisured class. It is not about producing
leisure opportunities in the community; it is about building in the fabric of support within community relations,
work, education and so forth — all of those areas — and contribution to the community that are important,
alongside leisure. We should not be producing a leisured class, and we should not be rating services on the basis
of those outcomes. I will come to that at the end when I talk about choice.
The idea of Reinders — in terms of active citizens, equal citizens — is based on the idea that people have
something to contribute to their community, that they bring gifts. It is an extraordinarily strong argument on
moral grounds that the respect for diversity, autonomy, choice and citizenhood are at the very core of people
contributing to their communities. However, it relies a great deal on the public to change their attitudes. The
idea here is simply 'being there' produces these relationships. I think there is merit in that argument, but it does
not hold water. There needs to be some sort of community development initiative. There needs to be some sort
of practice that supports those sorts of changes where people are there in their communities.
We also have the social model, which of course is at the heart of the Convention on the Rights of Persons with
Disabilities. The social model suggests that disability is socially created — for example, society builds housing,
transport and communities which are designed to exclude. The social model proposes that a focus on
accessibility will ensure that we socially produce inclusion, but there are some issues with this. Firstly, even
where you have design that is accessible, it is never always accessible to all, so there are additional things that
need to be done in order to include everybody. It is also a very broad normative theory, and it does not respect
diversity sufficiently, so particularly people with intellectual disability find difficulty in that model.
Then there are the postmodernist theories, which talk about the recognition of diversity, the importance of a
positive identity, celebrating disability identity and making claims as people who share an interest in order to
make change. I think there is merit in some of that as well.
In summary: No segregation by design, no graduation model, reduce restrictive practices, the right opportunity
structures for meaningful skills in everyday settings, community presence, relationships, choice, competence
and respect — respect for diversity, citizenship, self-determination, accessible environments and the need for
advocacy and voice while celebrating disability identity.
What do we have in prospect? What are the things which may have merit and contribute to this idea of social
inclusion that I think are going to be guiding our thinking in the future? Clearly the first is human rights. We
have the CRPD — the Convention on the Rights of Persons with Disabilities — and we have the Victorian
Charter. One of the things here is that it is really important to recognise that most of the ideas around social
inclusion rest in the economic, social and cultural rights, and yet those are not recognised in the Victorian
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charter. Whilst they are recognised in the CRPD, we need some targets and ways of looking and improving
those rights.
It also remains weak in terms of the everyday fulfilment of rights. We have strong complaints procedures, we
have strong representation through the Disability Services Commissioner, we have VEOHRC and we have the
Australian Human Rights Commission; however, underneath that, 99.9 per cent of the things that happen to
people go on. Many of them are infringements and people do not feel empowered enough to do anything about
them. So we need an everyday human rights package and a way of operationalising it in everyday practice.
We also need a dialogue in terms of rights between the right-bearers and the duty-holders. There is a necessity
here for people with disabilities to feel they can actually speak up in some way and pressure for change by
placing into the public domain the issues which they need resolved in their lives. Advocacy is really important
in that. It is singularly missing in the NDIS and I feel something needs to be done about that. Also, these formal
systems that do exist can be disempowering.
Then there is co-production. Co-production represents a new approach to the way in which services are
delivered in which people with disabilities are themselves seen as part of the solution. They contribute to the
design and also perhaps the delivery of those services. This is not a participation model, this is a co-delivery
model, and it fits very well with the individualised funding-type arguments that underlie the NDIS and
present-day thinking because it means that people actually use their funds to collaboratively create what they
want with others. We are building new forms of social relationships here, maybe even with chambers of
commerce, local businesses and communities as well as with the disability services. That break from disability
services is really important for inclusion.
The other one is the capabilities perspective. I believe that it is hugely important. It incorporates not just human
rights but areas of life that are in the everyday domain. It is all about things like laughter and creativity and the
connection to the environment as well as rights. If we cannot get those things right, we will not get social
inclusion correct. It is based on the idea of fulfilling a person’s potentiality. What makes life meaningful is that
we are pursuing our aims, dreams, wishes and aspirations, and we are struggling to do that by fulfilling the skills
that are appropriate at that point in time for what we are doing. We do it with the skills development and we do
it with the support we need, but we might not get there. People do not necessarily ever get there, but it is the
journey that really counts. That is what makes life meaningful. We need some stuff in there that challenges the
risk model as well.
Then there is new choice theory. I mentioned earlier that people have said that they can go to bed when they
want and they can eat what they choose and that is all that choice is. Over the past 30-odd years we have seen
that everyday choices and a few lifestyle choices may have changed, such as how we look and how we
represent ourselves. But when we look at the key pervasive life choices — that is, those choices which affect
everything else, like where we work, our education, our health or our intimacy in relationships — when we look
at any of those areas in terms of statistics, they have not sufficiently changed. So we should not be glossing over
this idea of choice by saying there are these small choices which people are achieving; we should really be
concentrating on those key ones and ensuring there are targets, ways, means and guidance to produce the
outcomes for those people.
That is very difficult in a system of equal opportunity and merit because, as we have already said, people cannot
achieve in that system, so the question then becomes: how do you change society to ensure that there is
recognition of other things? I will finish on that in just one moment.
The other thing about the freedom of choice model is that we have based it on this idea that everybody has
choice. I have written a piece — and I have handed you some evidence on it as well — around choice making.
Nobody is free to choose; none of us have freedom of choice. The key question is: are the limitations on choice
just or unjust? The document I have handed you shows some ideas around how you consider that from a human
rights perspective or how you can make judgements about those limitations and also the importance of
advocacy in trying to make changes in people’s lives either by themselves or with people with whom they share
ideas.
Just to sum up: a focus on capabilities I think is really important for the future. Then there is developing
potentialities, support designed to accomplish hopes, dreams and wishes and better epidemiological data based
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on the social determinants of outcome and not on medically set criteria. There should be ideas around
community development initiatives, which break the link with services and ensure that services are seen
generically across the community at large and not just within disability. That will require some
cross-government work. There should be government strategies and targets around pervasive life choices, as
well as new models for exploring the social return on investment. That is a really important idea. Your return on
investment is not just in monetary terms but in terms of the social outcomes that are produced for people. In fact
they are probably offsetting a lot of the budget as well. If people are happier, they are going to produce less of a
need for services.
There should also be new models which recognise the contribution that citizens make to society — for example:
can you recognise civic work and can you recognise creativity in community spaces? What is the space people
can occupy where they can contribute something, be recognised for it and celebrate it for what they bring to
society? All personal development must be guided by capabilities, but it also has to be set within the
individualised planning framework that we presently have. In other words do not have individualised planning
that does not do anything. We need to make organisations accountable for not meeting those plans and we need
to use capabilities to centre it on the person and make it a part of what their life accomplishment actually is as a
development. We need systems of representation, advocacy, choice, dialogue model, co-production and
co-design of services and understanding choice and its nature and reasonable and unreasonable limitations on
that choice. Finally — I am nearly there — we need to create a dignity of risk. We need to create hope, we need
to create resilience and we need to free people to be unencumbered by the formalities of the service system. We
need supportive natural networks and to leave those networks to be natural. That really means rethinking the
sense and the way in which services tend to bureaucratise the person and make them an item that can be
recorded. Reducing the bureaucracy in every setting, circumstance and situation should be done because the
higher the bureaucracy, the lower the natural everyday informal feel that people have about their everyday lives
and the more constrained and controlled people will feel as a result. With direct funding — individualised
funding — it is possible to see possibilities about how you reduce that bureaucracy to some degree.
That is where I have left it. I have run through a whole heap of ideas, which will hopefully furnish you with
some things that might support you to think through the future as well as what the past says. It is at the level of
ideas. Sorry, there is a lot of stuff there I know.
The CHAIR — Thank you. There is certainly a lot digest.
Assoc. Prof. RAMCHARAN — Sorry.
The CHAIR — That is the benefit of having you here to provide those thoughts and ideas. Social inclusion
to each individual could be and is very different. Certainly people with disability will have a difference of view.
You talked about hopes, aspirations and dreams. Given social inclusion is very individualised, how do you
therefore measure how successful we are in getting that to happen?
Assoc. Prof. RAMCHARAN — First of all we need to reconsider the place of the quality of life measures
we have presently been using in terms of academic outcomes. They are end-of-life measures. We need to be
looking at processes and the outputs of processes. I think if you look at a number of the initiatives that are taking
place at the moment, they are about how you develop peer support, for example, or how people can actively
learn and build naturally existing networks. It is how you build social capital: what is the bridging, what is the
bonding, what are the sorts of ways in which people are being supported in naturally occurring settings? All of
those have indicators which can be measurable.
We also need to look at a structural level as well. For example, if you look at the way in which human rights
indicators are constructed at the moment, it might be possible to develop some human rights indicators about
outcomes in relation to economic, social and cultural rights. We can see from issues around housing, education
and health, for example, where there is inequality. There are also indicators there about social inequality. We
have a lot of those in relation to the way in which we are recording how the Indigenous population is faring. I
think there could be some around disability as well. What we do know is that those indicators of social
inequality are reproduced over generations too. People with disabilities are unlikely themselves to flourish, but
so too are their children — if they have children. We need to look at those issues around those sorts of social
inequalities and measure them.
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When you look at other societies — say, for example, in northern Europe — what you find is that the
differential that exists between those who have and those who have not produces better outcomes in terms of
how comfortable a society feels with itself. So there are measures at a structural level that can be looked at: the
indicators — the social epidemiology, if you want to call it that. There are also things in there about the social
return on investment: what are the sorts of ways in which people have benefited within their community and
contributed something to it? I think we have not concentrated at all in the research area on what contributions
people actually make, so that would be an area that we want to go to as well.
The CHAIR — Can I just follow that up with a further question, in relation to disability services and the
audit structures they come under now? Would that not also be part of that verifying the plans that you talked
about, in terms of their individualisation and the implementation as well? Does the fact that those audits are
regular and are followed up with corrective action and improvement opportunities not fulfil some of what you
are referring to?
Assoc. Prof. RAMCHARAN — To some extent. There are additional things that I think would need to be
included, if I am right, that are not at this present stage. Firstly, where the plan has not been accomplished. This
is trying to press organisations to ensure that they do accomplish the plan as an important indicator. If people
have taken their funding elsewhere is also a very important indicator. So there are things to do with the plan
itself. I have lost the third point.
The CHAIR — You can come back to it.
Assoc. Prof. RAMCHARAN — There are important things that in addition I think should be taken into
account in relation to the individualised planning framework, for sure.
Ms HALFPENNY — I have a few questions. Is it okay if the secretariat write to you and ask a few
questions as well, if we do not have time to do them?
Assoc. Prof. RAMCHARAN — Absolutely. I will be very happy to respond.
Ms HALFPENNY — The first is around what you were talking about, the everyday rights and advocacy
versus making complaints to the Equal Opportunity and Human Rights Commission. How would you see that
happening in terms of government policy or support or whatever?
Assoc. Prof. RAMCHARAN — At several levels, and it goes back to the point that Dee has just made as
well. What I was going to say is that where there have been limitations on choice making, I think those should
be automatically sent back to some systemic advocacy organisation, because where you have repeated issues
they build up into something that the government needs to do something about. It is part and parcel of creating
the right sort of system of advocacy at a systemic level. So in answer to your question, Bronwyn, there are
systemic-level issues where we need some mechanism to demonstrate where there are recurrent problems
occurring again and again.
Ms HALFPENNY — As opposed to the individual complaint that is dealt with, there ought to be a way to
look at systemic — —
Assoc. Prof. RAMCHARAN — Yes. There is also the importance of funding self-advocacy, so that people
who feel minded to — and not everybody does and that is fine — can feel they are part of something bigger and
can feel that they can bring their point of view into a group which has enough strength. There is a concept called
equality of arms, I think, in law, which means that in order to make your point strongly enough you need to
have enough power behind you. I think self-advocacy offers one opportunity by which people can collectively
have the power to make the point that they want to make.
That feeds into the human rights model, because what you then have is a new form of dialogue. The human
rights literature in Australia at the moment is talking about this idea of dialogue with government and judiciary,
at those levels, but in fact we need a more mundane dialogue, a dialogue between the people who receive
services and the people who have responsibility to provide them. Unless you have that discourse and dialogue
going, I think that change is very slow and so you get a report once every 40 years but what you need is
consistent funding to support people to speak out. It is nothing to be frightened of. This is what makes change in
society. I know government sees it as problematic, but it is really important.
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I think it is about the way in which you fund advocacy but it is also, to be frank, about the way in which you
support the naturally existing networks and families who are under huge amounts of stress and pressure — so
families and also friends, too, who provide that supportive fabric for people with disability in the community.
Ms HALFPENNY — In terms of families, I know that people are concerned because there are ageing
parents with a child who has disabilities. Do you think the government should be doing something in terms of
any sort of transition to provide for that child into the future, so that the parents are not so worried about what is
going to happen to them and where they will end up? I assume as part of the family there is the social inclusion
to some extent but the concern is whether once the parents are too old or have passed away that will continue or
something else terrible will happen to their child.
Assoc. Prof. RAMCHARAN — I have been researching for 25 years in this area and my first study was of
500 parents in Wales during the period of what was called the All Wales Strategy for Delivery of
Normalisation-based Services. That is their major fear: ‘What happens when I’m gone?’. If you have a
framework that is planned and where you can see what the outcomes are and you work towards them, there is
less chance that it is unpredictable.
Ms HALFPENNY — Does the government do any work on that or do you think it is done well at the
moment?
Assoc. Prof. RAMCHARAN — I think it needs more. Also, if you look to the UK, for example, they have
the Carers (Recognition and Services) Act, which separates out carers for additional supports and payments,
which I think is really important as well, because they provide many billions of dollars of care free of charge,
which is never taken into account, and there is very little recognition of that. Clearly in times of austerity it is
problematic but I think that we owe carers something. A lot of families are in difficult situations. We all care
about our children and when things go wrong or if there are challenges over a life course, they just grind you
down — and many families are ground down. We need more funding and to work better as well.
Mr O’BRIEN — Thank you for your presentation. After hearing your evidence, I thought I might ask you to
give your thoughts on an important term of reference of our inquiry — that is, reference 1, which is ‘Define
‘social inclusion’ for Victorians with a disability’, particularly with the tensions you have identified between
what is society, in a sense, and how we continue the process of seeing the person rather than the disability
et cetera, all access-type situations when, if one is to be totally integrated, then in a sense it is normative to say
that the problem is becoming less measurable because a large section of society is dealing with various forms of
disadvantage. It is particularly acute in regional areas, mental health areas, alcohol areas, Aboriginal areas and
intergenerational disadvantage. Could I just give you a chance to help us to define social inclusion for
Victorians with a disability?
Assoc. Prof. RAMCHARAN — I am sorry to respond indirectly. The first point to make is that social
inclusion, as defining it for the individual, is again taking an individualised model, so that it actually places
some sort of focus and responsibility on the person. But I think by recouching it in terms of what we all need to
do to create inclusive societies, the responsibility is spread. So I think it has at least two aspects: one is the
responsibility on the person, the other is the responsibility of society. We need to recognise those two.
I am not going to give you a clear definition — I am sorry to avoid it — but I think it is also a dynamic concept;
it is not an outcome, so it has to be defined by the person in terms of their hopes, dreams and wishes. It has to be
defined from the earliest points in life. There is a lot of stuff down there where as children we are taught to think
in particular ways about our future. We are limited almost inevitably if we are separated, if we are not
recognised and if there is no expansive choice making as part of the repertoire of things that we might do. All of
us have great dreams, maybe to be astronauts who go around the world; none of us ever accomplishes it, but we
are on that journey.
Social inclusion is a journey in which we seek to accomplish those things that are meaningful and have the
context, the support and the settings, both naturally occurring and in terms of the disability support that makes
that possible.
Mr O’BRIEN — Can I just ask you as a supplementary question, how do you regard the approach that has
been adopted with the NDIS and the Victorian disability plan as furthering that sort of thinking or as a step in
the right direction?
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Assoc. Prof. RAMCHARAN — I think quite clearly individualised funding is a centrepiece to choice
making. It gives people the opportunity to spend the money the way they wish, unless you get bureaucratic
systems which do not allow them to do that. So we have to protect that choice. We also need to be very careful
that we do not bureaucratise informal aspects of caregiving. There are lots of things going on there at the
moment, for example, around whether or not the caregiver is registered, and all of the bureaucracy that goes
hand in hand with that begins to formalise what might have been very important informal relationships. There
are real issues here about the context of recording and public justification for expenditure which are highly
problematic. But if we go too far down the formal direction, we will impose on the natural nature of those
relationships.
Also I think we need to be sure that there is no conflict of interest in the choosing of the services, and we should
not have appointees under the NDIS who are appointed by the service from which the person is receiving the
service. If that is the case for people who cannot speak for themselves, what you are going to get is pressure for
them to receive the service again. There is that, and they need to be supported to transfer to other organisations
more easily, because if you really genuinely have a demand-led economy then you need to ensure that there are
not too many restrictions on that demand.
It is hopeful for the future, but there are things that still need to be done and protections that need to be in place.
Mr MADDEN — Thank you very much for your presentation. It was very impressive. You mentioned some
of the generic programs. I am interested in how you might describe some of the successful generic programs
that you have seen. I am conscious of cases where sport has had programs over the years that might have been
specific for certain disabilities, but then sports have moved into the realm — some, and very successfully —
where they will have a whole lot of programs under the one umbrella of one sport; they do not differentiate, but
they provide a more supportive environment for people with certain disabilities. They are the sorts of generic
models I have in mind when you mention ‘generic’, but I wonder if you might describe some successful generic
service models that you might have seen in your time.
Assoc. Prof. RAMCHARAN — Okay. I will just give you one example which has great relevance for me
because it is also research based. It is a piece of research funded by the Big Lottery Fund in the UK. They
require beneficiary involvement. They do not fund academics. They fund community organisations which then
have academics, or else they build their own capacity. We went with an interest in women with disabilities who
were pregnant and their experience over that period. They said, ‘We’re not interested in that, we’re interested in
the fact that women have their children taken away’, and one of the reasons they say is that they did not have
sex education and relationship training.
We said, ‘Right, we’ll write something up on that’, which we did. We went back and they said, ‘Didn’t we tell
you we wanted to do this research using theatre?’. So we went away and did something on theatre. The idea
here was to have a group of young people from 16 to 25 with disability doing theatre, spending 20 weeks
learning it, 20 weeks specifically addressing issues around relationships and sexuality.
That first 20 weeks was getting to know each other, but it meant that people who could not speak for themselves
could act it out, so they learnt through the doing. At the end of it, the main product of that research was not an
academic article; the main product of that research was a troupe of young people with disabilities who will sell
their services to schools to actually deliver sexuality and relationship training to many people with disabilities.
They have become part of the economy. They are paid as a troupe; they are not paid individually, so each gets a
wage. Being paid a wage from your local education authority means that you have quite a lot of money in and
you can go off and you can do other things.
The idea here is building that capacity for employment, for having something to offer, amongst people who
would not otherwise work — something that is creative, enjoyable and produces good economic outcomes.
People pay their taxes as a result, and people are included who would not otherwise be included. So there are
ways of actually employing people in those sorts of situations where the group is paid, but everybody gets paid.
There is an example of how you might structure your community-based initiatives around people with
disabilities contributing something to their community. I have heard great ones. The chamber of commerce
employed a mystery shopper. They had a group of people with a disability who were mystery shoppers. You tell
your staff, ‘There’s going to be a mystery shopper, and you have to treat everybody well’, and that sort of thing,
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but what they do not know is that it is the person in the wheelchair coming up to your counter, which is up high.
The mystery shopper, who is the person with a disability, gives the report. You have 19 per cent of people with
disabilities at any one time who have troubles with activities of daily living. They represent a huge proportion of
your population and they have a big spending power. If you do not get your services right, you are not going to
sell anything. So there are ways in which you can impose pressure by involving people in the constructive
change to society that is required to produce inclusion.
If you look at the UK, for example, they have self-advocacy groups operating — over 1000 locally — in nine
regions. Those nine regions are fed into one central self-advocacy group, with representation all the way
through. That group had two people who advised the government every week. One example of the way in
which this operated was in relation to the police. You might have heard of the campaign on bullying and
victimisation in the UK around people with disabilities. The local groups engaged the local police constabulary,
asking, ‘What can you do in my community to change things, the way we are treated?’. The nine groups worked
at county level, so that they were engaging the police authorities at county level and providing training. Then at
government level there was a link between the Department of Health, which housed disability, and the Home
Office, which looked after policing. There was cross-government operation on the basis of a circle of issues
feeding back from thousands of people with disability and self-advocacy groups right the way up to
government — a dialogue model, one in which you get the production of change in society and where
government departments come together.
It is really important to see that the role of government is not just within one department; it crosses different
departments. You have to find strategies and ways of actually doing that. I am sorry, I am giving a broad-level
response to your question, but there are so many different ones that I could talk about. Those are the sorts of
things that I have in mind.
Mrs COOTE — I have many questions that have arisen, as you can well imagine, out of your presentation,
and I have one that I know will not be easily answered. When you talked about the five accomplishments you
said that it relies strongly on changes in public attitudes as a response to people simply being there in the
community and that it needs community initiatives. Then you went on to explain the bureaucratisation of the
NDIS and the traps we could fall into. Given that this is the biggest change that we are going to have in this
country, and given that there is an enormous opportunity there, how do you believe that is going to relate to
what we as governments can do to translate this item in O’Brien’s accomplishments in the NDIS
implementation and beyond?
Assoc. Prof. RAMCHARAN — That is a massive question. I honestly do feel — and I have not researched
this — that so much time is spent on the production of quite exhaustive assessments and so much money goes
into that as well, and they are based on models that I do not think privilege the areas that we are talking about
here today. They do not privilege the way in which people’s lives are connected into their communities. I think
that if we were assessing such community connections, we might have a better way of creating citizenhood — I
will not say citizenship — or something where the premise upon which we are basing all our initiatives for the
person are ones that are tied to their inclusion and not tied to some pathological disability inside them.
For all these years we have just relied on the assessment of their psychology and their medical condition. Whilst
those are important, they need to be situated. The important thing for the future, if we want to get people back
into their communities, is assessing that connection, assessing the extent to which we are producing social
capital, if you like, and we are building social networks of support that will outlast and outlive the present
people in those persons’ lives. That is one way in which I think money can be reallocated — to think about how
we undertake the assessment in the first place. That is the most important part of changing, because after every
premise comes a syllogistic reasoning. You start with behaviours but you end up with changed behaviours, and
here are your restricted practices. You start with what communities are there; you end up with what
communities do you empower and how do you work with them?
I think it is good the committee has chosen social inclusion, because it is really the centrepiece for the future and
it is one way you have to resolve some of the fundamental ideas that society is based on. Again, equality of
opportunity must come into this thinking as well. It is based on merit. People with disabilities are unlikely to
have the same merit conferred. Whatever we might think and however we might conjecture, that is likely to be
the case. So in the absence of equality of opportunity, how can we restructure what is recognised to be valuable
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in people’s lives and how can we actually fund the sorts of initiatives which support that? There are some really
fundamental things, deep-lying things in this which are really fundamental to change.
The CHAIR — Thank you very much, Associate Professor Ramcharan. I will just remind you of what I said
earlier, that you will be provided with a proof version of the transcript for today. On behalf of the committee, I
thank you very much for attending this hearing and for your contribution.
Assoc. Prof. RAMCHARAN — Thank you all very much indeed.
Witness withdrew.
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