TRANSCRIPT
FAMILY AND COMMUNITY DEVELOPMENT COMMITTEE
Inquiry into social inclusion and Victorians with a disability
Melbourne — 20 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
Professor C. Bigby, research program leader, deputy chair academic board, La Trobe
University.
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The DEPUTY CHAIR — Before we begin I just have to say a few things. You would have received
information in the guide that the evidence that is taken at this hearing is taken under the provisions of the
Parliamentary Committees Act 2003 and other legislation, and it attracts parliamentary privilege. However, if
you speak outside the hearing, it does not attract parliamentary privilege. We are recording the proceedings and
a copy of the transcript will be sent to you when it becomes available. If you could talk to us for maybe
15 minutes or so, then for the remainder of the time we will have a chance to ask you lots of questions.
Prof. BIGBY — I have prepared a set of overheads which hopefully now you have a copy of. What I want
to talk about really is the key findings about research on social inclusion that our living with disability research
group at La Trobe University has been doing over the last 10 years. We are a very productive research group. In
particular I am going to talk about the work which is focused on social inclusion and participation of people
with intellectual disabilities, which is a very important and large subgroup of the population of people with
disabilities.
In recent years we have had four PhD students graduate around areas of social inclusion, and we have had a
number of peer-reviewed publications in journals, and reports. I have brought a selection of those with me,
which I would like to give to the committee for consideration, because I think there is some very robust
evidence which is based on really good research rather than hearsay and anecdote — which is obviously
important too. It backs up some of the information you would have received. What I want to do is to focus on
the evidence that we have about continuing social exclusion, look at some of the effectiveness of the current
services — particularly around group homes — and perspectives on what supports and obstacles there are to
inclusion from a number of different perspectives, particularly looking at community group inclusion, and then
look at some of the effective and promising practices and programs that we have looked at.
As I am sure you are aware, social inclusion is a really slippery concept and everybody has their own idea of
what it is. I do not think there is much point in arguing about definitions. If we take simply the one from the
Australian Social Inclusion Board, it is very broad. It talks about participation in employment, education,
family, social relationships and civic society. Disability policy, as you know, has had a strong focus on inclusion
at all levels of society — the individual, the community, the organisation — over a number of years. I guess our
research all comes from a systems perspective around the interrelationship of those different levels and the need
to look at strategies around those different levels.
The ideas of inclusive communities are ones that primarily enable accessibility of physical and sensory ways to
public places, to community groups, to shops and to businesses. Much of the focus in recent years in public
policy has been on accessibility and social inclusion of people with physical and sensory disabilities. That is
what people always revert to when they are thinking about social inclusion: they think about trams, transport, all
those things, being physically accessible. There has been much less attention given to people with cognitive
disabilities and people with communication difficulties, and the types of access and inclusion that they need,
and the way in which public places and mainstream services need to adapt and change in order to be responsive
to that group of people — particularly I am thinking around the health system, the transport system and the
criminal justice system.
The focus on those different systems has happened in parallel with a recognition of government responsibility
that inclusive work is not just around the work of disability services, and that it is a whole-of-government
responsibility. That is something that has changed significantly in the last few years. We have moved from just
thinking that disability and inclusion belongs with that little sector; it is actually everybody’s responsibility now.
One of the things I think we have seen in this sense is a move to de-differentiated policy, where policy has
begun to talk about all people with a disability. In a way it has been very positive, because it has brought
together the common issues, but it has also tended to ignore the different types of strategies that are required by
different groups of people with disabilities.
The annual round table we run was last year on inclusion in mainstream services, and we talked about it being
more than lifts and labradors — which are the simple things that people understand. For people with cognitive
disability it is much more complex. People require skilled individual support or adjustments of systems, and
they require the skills of staff within mainstream systems in order to make those adjustments. One of the
problems has been that we tend to see the representation of people who are more able — people who look more
normal — and they tend to stand for everybody, so we see very few illustrations around what inclusion means
for people with more severe and profound intellectual disabilities and people with more complex needs; we
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seem to revert to much easier people. That means that staff and the general community does not have much idea
really of what we mean by social inclusion when we talk about people with high, complex needs.
Our research has shown certainly that staff and others, and sometimes quite senior office-holders within places
like the Department of Human Services, really question the possibilities for social inclusion of people with high,
complex needs. We wrote a paper a few years ago based on some of that research which was titled It’s Pretty
Hard with Our Ones, They Can’t Talk, The More Able Bodied Can Participate, and staff were suggesting —
disability staff whose role it is to support social inclusion — that really it is too difficult for the people who have
high, complex needs and all we can expect is just for them to be present in the community.
We have I think a relatively poor record on social inclusion, and I am sure you have heard a lot about some of
the difficulties and the way there is still to go. There is unequivocal evidence though that living in ordinary
houses in the community with skilled support is a necessary but not sufficient condition for social inclusion.
One of the largest obstacles at the moment is the continuing number — in Victoria only small — of large
institutions that are an obstacle in themselves to social inclusion, and I would hope that this committee would
recognise that and would see the need to recommend closure of those large places as soon as possible. You
cannot have social inclusion if you are segregated and isolated from the rest of the community.
The new cluster models that we are beginning to see develop across Australia, particularly in New South Wales,
are also fairly problematic; there is a danger that we are repeating the past problems of segregating people with
disabilities from the rest of the community. And the evidence shows too that if you segregate people it not only
isolates them from the community, but it gives an impression and it forms public attitudes around where people
with disabilities belong, which is ‘over there’ and not part of the community. Having said that, small
group-supported living, particularly group homes, which have been the dominant model in Victoria, have had
very variable outcomes, and we have seen that from the research that we have done. We have been involved in
looking over a long period of time at the closure of Kew Cottages, and we have seen that the people who move
to small group homes are much more present in the community and they have much stronger social networks
than they had when they lived in the institution, but they still do not have social connections into community.
There are some outstanding examples of really good services, but the majority of people with disabilities remain
with very small social networks that are dense and are made up of family, paid workers, and peers with
disabilities. People have very few social connections that are outside of that distinct social space.
I wrote a paper a number of years ago called ‘Known Well by No-one’, which characterised the situation of a
significant number of people with intellectual disabilities who lived in group homes. Our findings were very
similar in Victoria in 2009, 2010 and 2012, when we did this research, to earlier findings about
de-institutionalisation — that people were present but not included in the community and did not have strong
social networks.
This is a concern because it indicates that our broader policies about social inclusion and changing systems have
not been particularly effective, that we are still getting the same outcomes. One of our concerns and our findings
from the research is that direct support staff and others really are not clear about the meaning of social inclusion.
There are multiple demands on support staff. They have very limited skills around building social connections
and they have this sense that presence is really all we can expect and all they are really skilled to do.
Our research shows that people who live in group homes continue to operate a group-based type of life. They
have outings to public places in groups; they have very few connections to places of membership such as clubs,
organisations, sporting societies and those sorts of places where they are more likely to be known as an
individual and be able to build social relationships.
We have done a large piece of work over the last couple of years, which was a linkage grant, called, ‘Social
Encounters’. It provides some evidence about the inclusiveness of communities. We started this work on the
basis of trying to rethink the distinction between the passive community presence and more active social
relationships. We have always had this distinction in disability between presence and participation, and our
sense was that there was something in between that. The literature from social geography suggests there is this
idea of social encounters, which is about convivial meetings of strangers, where strangers share activities in
public spaces like libraries or places of membership as well as fleeting encounters with other people in the
community, in shops, businesses and just out and about in cafes.
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We did a large survey of four geographic areas where we knew there were group homes, so we knew there were
people with intellectual disabilities living in those areas. Our proposition is that being recognised in the
community as an individual is the first step to being accepted in the community — being there, known and then
leading onto perhaps relationships, but being known and accepted is an important part of social inclusion, and
this ‘being known’ is moderated clearly by people’s social context and where people live.
We found from our surveys that just over half of community members did not know or have contact with
anybody with an intellectual disability even though we knew there were a number of people in these areas,
which is good because it means that at least half did. We found that younger people, people who live in country
areas, people in lower socioeconomic communities, people with a family connection and people who lived in
more cohesive communities where there was more connection generally, were much more likely to have
contact with people with intellectual disabilities.
We found that people mostly had contact in shops, shopping centres and in the street rather than in clubs and
societies and community groups, which bears out our research from group homes. We found, too, very
interestingly, that some people in the community go out of their way to welcome and acknowledge people with
intellectual disabilities in those public places as a sort of gesture towards social inclusion. But we found, too,
that some people talked about avoiding people.
We identified a number of barriers — why that avoidance was happening and why people were not connecting
with people in those public places. We found that people going out in groups with staff creates a sort of barrier
around people in the community, which means that community members do not make that individual
connection. We found that community members had a high degree of confusion and uncertainty about how they
should behave, particularly in relation to people with very high support needs. They generally have a lack of
confidence about how to behave, a fear of non-normative behaviours and a fear of being engaged in a
conversation or an interaction that they would not quite know how to handle because it was not quite the norm.
Generally people go to places where there are poor conditions for making individual contact and where there is
no chance to have that individual social interaction. You get to be known when you go to clubs and societies,
when you are in places where there is a chance to interact. That obviously does not happen in general shopping
centres and in cafes, which is where most people seem to go.
We identified that there is a very strong role for skilled disability support staff in supporting encounters in the
community. Support staff, whether they come from day programs or whether they come from places like the
KeyRing program or from group homes, have a very important role in planning opportunities for social
encounters, in initiating individual social encounters by introducing people and by prompting interaction, and in
terms of monitoring and supporting encounters, reassuring the public, stepping in, interpreting and helping
people in the community to know how to interact and feel comfortable in doing that. There is a very important
role for staff in facilitating social encounters. We also had a lot of examples of where staff obstruct and get in
the way of those encounters.
The outcome of that research suggests that there is a very strong need for public education and exposure to
people with a whole range of disabilities, particularly people with severe and profound intellectual disabilities
and complex needs who do not use normal means of communication, whom you cannot just have a
conversation with and with whom you need to engage differently. Many years ago the state plan suggested there
would be a public education campaign around social attitudes and encounters with people with disabilities. We
have never seen that eventuate, and I think that is something that needs to be revisited.
We have also done a significant amount of work on inclusion in community groups. I had a PhD student who
finished at the end of last year, and we had again a linkage grant in collaboration with people from the
University of Sydney. That was looking at inclusion of people from supported employment services who were
wanting to retire and also of people with high support needs from day programs who were looking for
alternatives to just going to a segregated day program. We identified clearly that there is a continuum of
participation in community groups from very active participation, where there is equal membership and where
there are shared activities, to where people with and without disabilities benefit from participation. We
identified that leaders of community groups — and we should talk here about the whole range of places in the
community where people spend time — including people who run op shops, people who run things such as the
cat protection society, for instance, and people who run senior citizens centres, have considerable anxiety about
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including people with intellectual disability. They are worried about how people will fit in, and they are worried
about people being manageable.
We identified a number of factors that affect the success of inclusion and of active participation in community
groups like that and in volunteer situations. Those factors include the need to have one person at a time; you
cannot include a whole group of people in a small community group. The group needs to reflect the interests of
the person with a disability. It needs to be person-centred around their interests.
Success also depends on the expectation of members that this is the right place for this person. We had one
example of an op shop where the person was engaged as a volunteer but where there was a clear sense from the
manager of the shop that this really was not the right place for the person because this large charitable
association had sheltered workshops for people like that and their job was to raise money to fund those
segregated services. Expectations are really important.
Shared responsibility: including somebody is everybody’s responsibility rather than just that of the leader.
Accurate and honest feedback to people who are included: people with intellectual disabilities cannot adjust
their behaviour. They cannot learn to fit in unless they are given feedback about the way they behave. Many
people with intellectual disabilities have no experience of interacting in ordinary community groups. Many
people spend much of their lives in segregated groups.
People who are familiar with people with intellectual disabilities, particularly where they have family members,
are very supportive of including people in groups. We found generally that people are very kind, and people
respect and have regard for people with disabilities when they are included in groups. Access to expertise is
really important. Even the most inclusive group we experienced needed to have expertise from our staff around
how to include somebody. People have good intentions, but there is actually knowledge that they need about
how to include somebody. For example, one of the groups let somebody, they thought, choose not to
participate. They said, ‘Oh, we say to everybody, “Now it is time to come and do the cooking”, but she chose
just to sit and watch, so that was her choice’. When we looked at that and talked to them it was clear that
actually the person needed a prompt, needed a cue, needed to be individually invited to participate, and was
very happy to do so. But that knowledge was not within the remit of the community group leader. So you need
that expertise. We do not need specialist separate groups, but we need expertise to be fed into some of the
mainstream groups to enable inclusion to happen.
The final element of success is around having an integrating activity. Some groups are easier to fit into than
others. Sharing activities is a key to social inclusion, and some groups have mechanisms for enabling that to
happen. For example, in a walking group people walk individually or in pairs. But if you call everybody
together at the beginning and say, ‘Who is going to walk with who to start off with?’, that is an integrating
activity that ensures the person with a disability has somebody to walk with.
The skills of the person with a disability are really important too, and we need to remember that people can
develop skills and can be supported to do that.
In terms of the role of mentors within groups, our pilot program demonstrated that you can support and train
other community members in groups to provide support for inclusion, to provide people with social support
around fitting in, to be the introducer and to understand how to support people to be involved in particular
activities. But underpinning support for inclusion in groups, with the structures that underpin that, it needs to be
somebody’s role.
Again, this comes back to specialist expertise and specialist programs to facilitate inclusion. It needs to be
somebody’s role to locate, to understand, to match somebody to the culture of a group, to negotiate their
participation, to recruit and support mentors, to troubleshoot and to monitor somebody’s inclusion. We found
that clearly people can be quite independent in groups, but things change. People’s individual circumstances
change, their mentor might leave or the group might change. You cannot just leave people to be part of a group
forever, because they are likely to end up sitting in the corner or not being able to get there if something changes
in their lives.
The example we have written about in the book that I will give you is run at AFFORD enterprises in New South
Wales, which is the transition to retirement project. It now supports people, based on our research, to attend a
community group one day a week instead of going to work. There are some extremely good programs here in
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Victoria. They are programs; they have a logic and they understand what they are trying to do, and they are
based on some of the research evidence that we have got. Shepparton Access is one very good example;
Inclusion Melbourne, which no doubt you have heard from, is another very good example. This is about
developing specialist expertise and programs to support inclusion in mainstream groups. It is an investment.
What we are seeing a lot of is simple companionship, where people are getting support workers to go with
them, to go out for coffee, to go here, to go there. You could do that forever more. If you invest in a strong
program, you will not need that one-to-one support all the time in the long run. One-to-one support with a
support worker is not really social inclusion in that same way.
I am nearly there, if I could continue. We have also just finished a linkage grant around self-advocacy. We have
been looking at the connection between self-advocacy and social inclusion. Again, I had a PhD student who has
just finished, and we did a number of other projects around that. Traditionally you think about self-advocacy as
being part of advocacy for social change. What we have tried to do is to look at how self-advocacy groups,
which are small peer groups of people with intellectual disabilities, contribute to social inclusion. We have
found some very strong themes about the significance of self-advocacy groups both to individuals’ positive
social identities and their inclusion in society. This came from research that was done in the UK by the PhD
student and a comparative study that was done here in Australia.
We found that self-advocacy groups are small places where people belong and have a sense of ownership and
control. They provide opportunities for a whole range of activities and social roles for people with intellectual
disabilities, such as involvement in campaigns, government consultations, research, collaboration, training and
project work, both paid and voluntary.
For individuals they lead to social connections to their peers, to their colleagues and to other people with a
whole range of common interests. They may be segregated groups, but they are a way into mainstream
connections to other advocacy groups, to other training groups and to other people in the community. They
provide people with an occupation and the opportunity to do something worthwhile — paid or unpaid — and
they provide an avenue for involvement in civic society by people with intellectual disabilities.
For the wider community they demonstrate that participation is possible by people with intellectual disabilities.
They act as role models of what is possible. Self-advocacy groups raise expectations that governments,
committees and organisations will include people with intellectual disabilities on their boards and in reference
groups, and self-advocacy groups create a pool of people with skills to be able to participate on those boards.
Again I had a PhD student a number of years ago who was funded by a scholarship from the Department of
Human Services and whose thesis looked at the skills that are necessary to support people to participate on
advisory groups and boards. She found that the most important thing is the attitude of other members of the
board rather than individual support.
Self-advocacy groups are really important vehicles for social inclusion. It is important that we begin to see them
as a vehicle for social inclusion and that we seed new small groups. Groups need to be small, not huge. They
need to be networked together. They require skilled support and funding to enable that to happen. At the
moment the funding sources are very unclear.
The DEPUTY CHAIR — I am just a bit worried that we only have about 10 minutes or so for questions.
There might be something in here that is not self-explanatory that you might want to draw us to. I do not mean
to interrupt, but I know that people have questions. Because this is written, we can read it. Maybe there are a
few things that are not clear which you could draw our attention to.
Prof. BIGBY — It is written in dot points, so it is really hard — —
The DEPUTY CHAIR — Maybe you could even talk a bit about the key issues — I do not know.
Prof. BIGBY — Just finally, to pick up on what the previous witnesses said, at the moment we have some
work in progress on looking at supported living options, knowing that there is very little research on those
options. There is much more research on group homes. This is work in progress, but it echoes quite a lot of the
experience of the KeyRing people — that drop-in, tailored support does work for people who are living
independently or with friends in rental accommodation. People in those sorts of situations value freedom and
independence, and they appear to be much more socially connected than people who are living in group homes.
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Maybe they are a more able group, but maybe not. We found from our work in group homes that there are a lot
of people living in group homes who if they lived in the UK would not qualify for group homes. A lot of people
have the potential to live much more independently than they are at the moment.
In these sorts of settings, people require a safety net support. They have support for cooking and cleaning and all
those basic things, but it is the unexpected that trips people up — when a letter comes, when they need a health
appointment or when there is particular incident. It is that type of support that is not well funded and is not seen
in people’s funding packages. That is the type of role that the coordinator of the KeyRing service actually does.
The great thing is that the people who we interviewed felt safe and secure that they could always pick up the
phone and would have somebody who would be able to solve the problem, and that was the KeyRing
coordinator. The KeyRing coordinator said that works really well; however, we are not well funded to do that.
There are a number of informal KeyRings that exist that have no funding at all for that. People obviously have
difficulty with rental costs and experience discrimination in rental markets. People are concerned about their
safety at night and about interference from phone salespeople and door-to-door people. People are very
vulnerable.
One of the issues we found was access to the internet. A lot of people who live independently can use the
internet and use it at their day programs and in public libraries, but they do not have access at home because
there is no support available for supporting people to negotiate how to get that access and to use it well. That
means increasingly they are going to be excluded from information and knowledge. It is a real gap that nobody
has paid much attention to in terms of making that technology accessible to people with mild intellectual
disabilities.
My main messages are that there are a lot of good intentions around social inclusion, but we have not made a lot
of progress. The undifferentiated approach is fairly difficult; we need to recognise the diversity of people with
intellectual disabilities — people with disabilities in general — and think about what inclusion looks like and
how we achieve that for some of those very different groups. We need differentiated, targeted strategies at all
levels of the social system. We need to work with the existing community infrastructure that we have —
existing community groups, clubs and societies that really are the fundamental basis of civic society — and
work to include people individually in those places, because that is where they will be known and where they
will be able to build their social connections.
We need to avoid specialist segregated programs but acknowledge the role of expertise in building mainstream
capacity. I think, as a researcher from the outside, we need to make much better use of the evidence that we do
have about what works and why it works. We need to invest in skilled work and specialist programs, and that
investment will pay off in the long term. There are a number of examples, but there are not that many in
Victoria. I think we need to build some evaluation into programs and we need more demonstration programs to
prove what works and how it works and not rely on spin and hearsay about what works, because when you
begin to look at some of the things that people say about services they are not actually borne out by research.
People are very good at glossy brochures at the moment, particularly in this current climate.
The DEPUTY CHAIR — Thank you; that was really good. Just in terms of working with mainstream
groups and participating — this is a question about an experience, I suppose — I want to ask you what you
think should happen, because obviously it was done wrong as it did not work. This was a group that my son was
involved with. He does not have a disability. It was a group that was teaching gymnastics to young children —
teaching them how to roll and jump and those sorts of things. I think there was a mainstream program, and there
were a couple of able-bodied children and some children with a disability. One of the problems that happened
was that the children without the disability ended up leaving because they would be waiting for their turns for
an hour. Obviously that was done wrong, and I am not saying that that is not how it should be — I
understand — but how do you ensure that a program attracts both those with a disability and those without one
and ensure that they all stay there? Does that make sense? I am sure this happens a lot, and I do not know what
the answer is. What are your thoughts on that?
Prof. BIGBY — I hope some of what I talked about demonstrates that you cannot include groups of people
with disabilities in mainstream groups — —
The DEPUTY CHAIR — Without the extra support and without — —
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Prof. BIGBY — Why do you want to do groups? You need to have individuals. People need to be supported
to join — —
The DEPUTY CHAIR — Sorry, it was a community group. It was not a — —
Prof. BIGBY — Yes, but we end up saying, ‘Let’s have five or six people with intellectual disabilities come
to this group’ — —
The DEPUTY CHAIR — No, no — —
Prof. BIGBY — That is what happens.
The DEPUTY CHAIR — I do not think that was how it was. The parents of the children — —
Mr MADDEN — Just brought them individually.
The DEPUTY CHAIR — Yes.
Prof. BIGBY — Or together?
The DEPUTY CHAIR — Individually.
Prof. BIGBY — But you ended up with five or six people in a mainstream group?
The DEPUTY CHAIR — Yes, so obviously it was advertised within a certain group of people — I do not
know — but that was — —
Prof. BIGBY — People end up — —
The DEPUTY CHAIR — I am just trying to understand, I guess, how you do it — —
Prof. BIGBY — People end up drowning — —
The DEPUTY CHAIR — Is it by extra resources? I do not know.
Prof. BIGBY — I do not think you can do it in that way.
The DEPUTY CHAIR — Right, okay.
Prof. BIGBY — You have to start with the individual and say, ‘What do you want to do? Do you want to go
and join a gym — a program for kids?’. You find one in their local area where they can join in and get support
to join in that, not to have five or six other people with intellectual disabilities go, because then they become
different and separate. You have to work with the individual to attend, but then you have to do the background
work with the people who are attending, with the leaders of that group and with the other kids in the group if
necessary. You have to manage and almost shape that inclusion to make it work. It will not just happen, because
people do not know how to respond to kids with disabilities or adults with intellectual disabilities. One of the
things is you cannot do it in big groups. There are so many examples where neighbourhood houses get
swamped by people with intellectual disabilities and then everybody else leaves. You need to replicate what the
community looks like. There is 1 to 3 per cent of people with intellectual disabilities in the community. You do
not need more than 1 to 3 per cent in any community group.
There are well-intentioned things that go very wrong. What we are beginning to see is HACC services or local
government saying, ‘Oh, let’s have a men’s shed for the special needs people’. You have one for everybody else
and then you put all the special needs people there, or you swamp the mainstream one with special needs people
and then it becomes a special needs one. The work of inclusion, I would argue, is really skilled, and we actually
do know now a lot about how to make it work. We need to invest in programs like Inclusion Melbourne and
Shepparton Access that understand how to make that work on an individual basis.
Mr MADDEN — It is almost like investing in an advocate on behalf of that individual with special needs to
go to whatever group they might be thinking of joining and negotiate the way in which you manage all the
issues that that individual might present in terms of the broader group, but also specifically for that individual.
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Prof. BIGBY — That is right, but you do not need that advocate there all the time.
Mr MADDEN — No, but just to help skill up people.
Prof. BIGBY — Yes, but you need to have access to them in case. That is where I think we need programs
that will support that to happen and that have that expertise, rather than saying, ‘Let’s find you a support worker
one-to-one who can go with you’, which is what we tend to do in schools, so you get this limpet who comes
along and gets in the way of any inclusion and is not particularly well skilled. We have to think about programs
that provide individualised support that is intermittent, episodic and skilful.
Mr MADDEN — And flexible.
Prof. BIGBY — Yes, flexible — all of those things. We need those designs and we need to invest in those
types of things. Then we will get inclusion, because it is skilled, difficult work in relation to people with higher
complex needs. It is not so difficult for people with physical and sensory disabilities. They can argue for
themselves; they can work it out. They just need to get there.
Mr MADDEN — Yes, that is right. Thank you.
Mrs COOTE — Christine, thank you very much indeed. There is a lot of information here. One of the
things I would like to ask you about is that we have a once-in-a-generation opportunity with the NDIS to make
certain that we do not build in unfortunate cultures into what is going forward. From what you said, there will
be a different configuration of living. Hopefully people will not want to go into group homes. People will make
other individual choices et cetera, certainly in our trial site with Colanda. How do you envisage getting the right
culture in this process? There are planners working in the NDIA at the moment. I know you have a big section
in here on the NDIS in the paper that you have included, but it is more a practical thing that I wanted to ask
you — about how we get it right now so that we are developing models to roll out across Australia. What
should we be looking at now in the planning to make sure that we do not get it wrong?
Prof. BIGBY — You need to look at the research and the evidence about what we know works and what we
know does not work. We know that clustering people together in large or small groups does not work. It is an
obstacle to social inclusion. We know that small, ordinary houses of one to four people — one person, two
people, three people or whatever, but not more than four or five — is a necessary but not sufficient condition.
We need to think about the models of how we find people housing with the people they want to live with, not in
the way that fits the service system. Then we need to think about how we are going to provide support.
I worry that we are too focused on models and too focused on housing. It is actually the type of support you get
once you have got a house that makes the critical difference. We are hopefully going to have much more
dispersed housing and much more dispersed support, so we need to create a culture of excellence of support.
We know what good support practice looks like: it is about enabling and facilitating people to be engaged in
their own lives in both the house and the community.
The challenge, I think, is to create cultures in organisations that are managing that support of teamwork around
people and of practice leadership. The evidence from our current research shows that if you have strong practice
leadership at the front-line leader level — the front-line manager or supervisor — then you get really good
practice. If we do not pay attention to the practice, and then the leadership of that practice, we will end up with
really poor services. A lot of people are really concerned at this moment about ending up with large clusters of
housing or large mini-institutions, which could set us back 40 or 50 years.
Mrs COOTE — Do you think that is really the case and that people are looking under the new NDAs at
cluster housing? Do you think that is really where they are going?
Prof. BIGBY — In New South Wales, yes.
Mrs COOTE — I am speaking about Victoria. In New South Wales they have got some major problems
with their institutions in Newcastle, as you and I both know, but here in Victoria I do not think that is the case.
Prof. BIGBY — I am beginning to hear people being very frustrated. People are saying, ‘When we went to
the NDIS, or NDA, they asked how many hours of support we needed. They said, “Housing isn’t our
responsibility. That’s the state government’s responsibility”‘. Then they say, ‘We went to the state government,
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and they said, “That’s not our responsibility”‘. I think we need to think about people as individuals.
Redeveloping Colanda is probably not a good way to think about it. It is about the number of people who are in
Colanda and what the best housing option is for each of those individuals.
Mrs COOTE — Colanda is the only one we are dealing with here in this state. The reality here is that we
are looking at Sandhurst, for example, and we are looking at individual needs, as you know. That is hopefully
what we are going to do with Colanda as well. You are saying to put the emphasis on the support rather than the
housing. If the support is right, they will find private state-run — well, into the future, who knows whether it
will be state run — housing that is appropriate to the KeyRing model, as long as they have sufficient support. Is
that what you are saying?
Prof. BIGBY — As long as the quality of the support is sufficient, not necessarily the quantity. It is the
quality as well as the quantity, and I think it is the ‘and’. You need housing. People are going to need access to
affordable rental housing, and they are going to need the appropriate support. I do not see any reason why we
cannot continue to have small group homes. We know from the research that they can deliver really good
outcomes if they have really good support and supervision. It is not the only model, but it is one model and we
do not necessarily have to discard it completely. We already have a huge infrastructure of good homes which
are going to remain part of the system for a long time, so we cannot afford to demonise them. They do have the
potential for good outcomes.
The challenge is that people with disabilities suffer from being in low socioeconomic groups, the same as other
people in the community. Access to affordable housing is really problematic for that whole group of people.
You have to solve that problem.
Mrs COOTE — And we will not be redeveloping Colanda.
Prof. BIGBY — I am pleased to hear it.
The DEPUTY CHAIR — Thank you so much for coming in.
Prof. BIGBY — Thank you.
The DEPUTY CHAIR — If we have some further questions, is it okay if we write to you?
Prof. BIGBY — Yes, sure.
Witness withdrew.
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