Melbourne Room
DisabilityCare Australia National Conference Day 2 Enabling choice
and control userled disability organisations
LYDIA ROSS:
If I could ask everyone to take their seats. We’re just about to get started. Thank you very much.
Well, welcome to the last of our Enabling Choice and Control concurrent sessions this afternoon. I’m
very pleased to introduce you to Belinda Epstein-Frisch, Catherine Mahony and Linda Hughes and
they’re going to be talking to us about their Practical Design Fund project, which was about setting
up a template and processes for people who are interested in developing their own disability
organisation led by people with disability. The ladies come to us from a range of organisations in the
Hunter. The Community Disability Alliance from Hunter, Family Advocacy and the Physical Disability
Council of New South Wales.
So, please join me in welcoming them to the stage.
(Applause)
BELINDA EPSTEIN-FRISCH:
Thank you. Let’s just get the overheads. Oh… alright… ah ha, here we go. Never… technology’s never
a good feature of mine. What I want to talk to you about today is a little bit about - what we’re all
going to talk about – is a little bit about our project, why we developed a disability support
organisation, what we did in developing it, what we’d like to do now and in the future and what are
the challenges that we face.
Our project, that was begun before the Practical Design Fund, but was actually enhanced through
the money for the Practical Design Fund, was to developed a user-led disability support organisation
and it’s now an incorporated association called Community Disability Alliance Hunter, or CDAH, and
to document the process, so as to provide a blueprint for replication in other parts of Australia. And
there’s a resource that will be up on the Practical Design Fund website that tells our story as well as
putting together a lot of additional resources that would help any other people with disability, and
families who are interested, to do the same thing.
So, why did we decide to develop a disability support organisation? First of all, we were actually very
enthused by the Productivity Commission’s report identifying what was, at that time, a new concept
of an organisation in Australia: a disability support organisation. An organisation that would be an
agent for people with disability, that would stand beside them and help with things like personal
planning and individual guidance, like linking people with the community, assembling packages of
support, providing that value-added in terms of the support that people had. And the aspect that the
Productivity Commission identified that really did interest us enormously was the role of a disability
support organisation in building the capacity of people with disability in families.
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We’d had a little bit of experience, really more from reading than direct experience, with user-led
organisations in the UK and, you know, these sorts of organisations have been relatively mainstream
and have had a pivotal point in leading the whole reform process for people with disability in the UK.
We saw the value of user-led organisations in providing peer support, in sharing the wisdom that
comes from lived experience, in helping people to plan, to build capacity and to build their
confidence. And we thought that was a really very, very important thing to happen in this new
space.
In addition, we saw a number of service providers who’d started to plan to develop this kind of
planning and capacity-building for people with disability themselves. Service providers that were
talking about erecting, you know, paper walls and the like to try and minimise conflict of interest.
And we felt that it was absolutely critically important that organisations operating in this kind of
space were user-led - organisations of and for people with disability - because that would help to
minimise conflict of interest and, critically, because people with disability and their families could
share the wisdom of lived experience assisting other people in their endeavours.
Cath’s going to talk to you now about what we did in developing that process.
CATHERINE MAHONY:
OK, so as… oops, just bumping the microphone. As Belinda said, one of the things that we did as part
of our project is to produce a resource. It’s a nice, easy to read, it’s kind of a bit of our story of what
we did, so it’s not a heavy read that you have to wade through. And, at the end of each of the major
sections of that… or, each of the sections of that report, we’ve included some key learnings, or some
things that we’ve learnt. And, I guess, in my few minutes with you, I’m very vaguely following that
report format. So, a bit of a chat about a couple of different things that were key, and then, the
learnings from each of those sections.
So, the three things that I’m going to focus on that were really significant in us getting to where we
are, which is, as Belinda said, we’re an incorporated association. So, I’m going to focus on building
interest, building relationships and thinking about the infrastructure, or the structure of our
organisation. So, building interest wasn’t too difficult. We, in the Hunter, you may know we’re one
of the launch sites for the National Disability Insurance Scheme. So, as soon as you say, “NDIS,”
someone, somewhere wants to know about what you’re doing. And we, you know, that was the
reason our project was funded, because of its capacity to assist with the rollout of the NDIS. And so,
we really used that as a catalyst and that helped us a lot to build our… to build that interest and our
momentum, I guess. So, we did often link with the NDIS, directly or otherwise.
So, as Belinda said, we did get started before we had the funding. We had the forum in November,
which was called NDIS in the Hunter: Getting in Control. And that was a day that we held for people
with disability, their families, allies and service providers. And that was an opportunity to give people
some information on the National Disability Insurance Scheme and we gave people some examples,
some real-life experiences of how some people were already using their individualised funding to
live the lives that they choose. And then, in the final part of the day, we made that for people with
disability and their families and allies, and we discussed how people with disability can be in control.
We looked at how the user-led organisations had worked in the UK, just very briefly, and that’s
basically where CDAH began. So, by the end of that day, we had about 30 people who said, “Yes, we
believe that we need a user-led organisation in the Hunter and yes, we want to be a part of it.”
And so, we took their names and about a month later we had our very first meeting, just before
Christmas, with a working group of about 20 people who have stayed really actively involved, really
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dedicated individuals. Some of them are here today, so you can have a chat with them after as well if
you like. And we’ve been meeting fortnightly and working really hard to get the organisation
established.
At the same time, we had a steering committee that oversaw the work of, and were really involve in,
getting the working group and CDAH established. And we need to thank both of those groups of
people, the working group and the steering committee.
So, that was… so, we got started and then, in April, with the help of our working group, we held
three more seminars. We gave people some updated information on the National Disability
Insurance Scheme and, again, we focused on how people could use their individualised funding to
get the support they want and live the lives that they want to live.
We also asked the… there was about 100 participants across the three workshops and we asked
them what we could do to assist them. What did they think a user-led disability support organisation
could do to assist their transition to NDIS and individualised funding?
So, in terms of, yeah, getting started and building that interest, the key things that we learnt was,
basically, communicate, communicate, communicate. Get out the word as often as possible. Keep
the information flowing. Try and make everything that you do accessible from, you know, venues to
the information. Make sure that it’s clear for people who might not know a lot about terms like
individualised funding and as NDIS was still very new and there were lots of questions around, I
mean, the conversations around it were still fairly in the early stages.
It was really important to us that we – and we would recommend this to others in the report – is to
seek connections within and outside your usual circles. So, we did a lot of that. We worked with the
media and we used social media to connect with people. And so, they’re other things that we would
recommend to anyone else who wants to start a user-led and we hope that you will want to do that.
Find something that, you know, creates or ignites people’s passions. Find the people who can tell the
story, so who can communicate it effectively and ride the wave of enthusiasm. So, yeah, those are
some of our learnings. Make sure it’s accessible and find people, or organisations, who can talk to
others about what you are doing. So, the whole word of mouth thing can’t… mustn’t be
underestimated and that’s certainly our experience. We learnt to ask for help and we learnt to ask,
you know, people for commitment to our new organisation.
So, that’s what we did to build interest, in a nutshell. And then, the next thing that we did was work
on building relationships and finding partners. So, as a new organisation, we believe it’s really vital to
establish good relationships with other community organisations. We were… we felt it was really
important from the beginning that we were seen as embedded in the community. That’s, I mean,
community is the first word in our title, probably, we need to say no more about how important it is
to who we are and what we want to be.
We also thought it was… to maintain independence, we thought it was important, yeah, to establish
links with organisations that weren’t disability service providers. And, as soon as we would talk to
people about what we were doing, they would often put us in touch with disability service providers.
And that’s OK, but we were wanting to, sort of, inhabit a different space. We sought out community
organisations that believed in the empowerment of people with disability and we met with them,
lots of those, as we were going along. And, while we found lots of goodwill, we probably only make
five really strong reciprocal connections. So, that was a bit of a challenge for us.
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But, anyway, some of the things we learnt when we were building relationships were that money
and resources are scarce in the community sector. There were lots of… there are lots of competing
organisations and causes. We found it was really important to be clear about what we wanted and
what we could offer and, I think as we went, we realised that we needed to become more clear than
we were initially on what we wanted from partners and also, sort of, hearing from them what they
could offer us as well. So, yeah, we did a lot of networking.
We also tried to tap into and to build on people’s… no, I’ve said that, sorry. I think that’s all for that
one. Sorry, my apologies, just had a little glitch. Yeah, and we talked a lot about why we were
passionate about what we were doing, so that was important.
We also, as I said, we talked a lot about the NDIS and we wanted to have a voice around the NDIS,
that was part of what we did and why we were doing what we were doing. So, it’s an important part
of CDAH, is that we’re a collective voice of and for people with disability, particularly as we move to
a new system. We want to have a positive influence on the rollout of the NDIS, so we had meetings
with the local branch, the regional manager of DisabilityCare, and we offered our help in whatever
way that we could. So, our working group members have assisted with the recruitment of
DisabilityCare staff, so the planners and the senior planners and some of the regional support
offices. We would’ve loved to have had a role in the initial selection of those candidates, but we
were really pleased to sit on the recruitment panels and just to make sure that the perspectives and
the interests, best interests of the people with disability, were paramount there.
Some of the members of CDAH and some people that we knew throughout our networks also
assisted in the testing of the DisablityCare assessment and planning tool. So they were some of the
things that we did.
We also wanted to get the word about the empowerment of people with disability and all the things
that we stand for. We wanted to make sure that that got out to the general public as well. So, we
made ourselves available to the local media whenever we could and we got to the point where we
would be called upon when little, like, whenever anything happened, any story broke, if you like. We
wrote some opinion articles as well, just to keep raising our profile.
So, some of the things we learnt from those experiences were, we did have to be persistent. So,
that’s important, to be persistent. We talked to people who knew the people that we wanted to talk
to, if we couldn’t always speak to them directly. And whenever we were invited to do anything, we
were really enthusiastic about taking up those opportunities. So, some of the things we learnt were
to talk to people about our vision and to persuade them about why what we were doing mattered.
To ask lots of questions. To get to know the people who make the decisions and to try and be useful
to the people who make those decisions as well. And to find ways to advise the people who make
those decisions.
Finally, I’m just going to talk briefly about building the infrastructure of the organisation. What was
absolutely amazing from the beginning of the process was the alignment of values of the people in
our working group. We were all very much coming from the same place. We wanted to be an
independent and a collective voice for people with disability and we were all committed – and are
committed – to the full inclusion and active citizenship for people with disability.
We want to assist people to build the skills and capacities they need to get the support to live the
lives we choose. So, while there was a bit of toing and froing about our mission and vision and
values, and the wording of those, we were always completely in sync on what we wanted to do and
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what we believe are the rights for people with disability in the Hunter and beyond. So, that was a
really quite a lovely… a wonderful thing.
So, while we knew what we wanted to achieve, it was tricky for us to think through the roles that
CDAH could have. We were thinking about ourselves as in a new space, as part of a scheme, or,
yeah, working alongside a scheme that’s based on some fee for service. So, we had to do some
shifting, some moving, in our thinking and also in our emotional responses. From the system we
know now, to the NDIS and individualised funding, which I think we’re still all trying to imagine what
it might be.
So, we had some fun, ‘cause we got a bit stuck. So, we had some fun and that really helped us. So,
we thought about what were some things that we would buy and what were some things that we
thought that other people with disability might be interested. And we always took the opportunity
to ask other people what they might like as well.
So, some of the key learnings from that experience was it’s good to have some money, if possible. It
was really fortunate for us to have some funding to get started. Our working group is diverse, so
that’s good, and we could support each other to stay involved. We did have to think about some
financial models and, because we didn’t have a lot of expertise in that area, we had to find that
expertise elsewhere. Don’t rush the big conversations was another thing that we learnt, even though
I’m doing it right now. It takes time to think outside the box and to think differently. So, don’t rush
those big things. And, as I say, it was mainly around deciding, yeah, who we are and what we wanted
to… how we wanted to translate that.
And so, we are now incorporated. I think I’ve covered everything I needed to say. So, we might hand
over to Linda.
(Applause)
LINDA HUGHES:
OK, so now we get to the actual part where we’re an organisation and what are we doing? What are
we providing? And I think one of the interesting things is that we’ve been hearing today quite a bit
about capacity-building and not a lot about who is doing the capacity-building and I think that’s one
of the really fantastic and important and unique things about Community Disability Alliance. As a
user-led organisation, we’ve got, you know, a really important role to play in assisting people with
disabilities and their families negotiate this new system. So, what we’d like to provide, I suppose, is
support and assistance to people with disabilities so that they can make the most of individualised
funding. So that they can have real voice, choice and control and each person is supported to live,
you know, is supported in their own unique way to live the life that they choose.
The thinking around what assistance people might require came somewhat from the
recommendations of the Productivity Commission, what the Productivity Commission recommended
as far as supports go for people with disabilities. Certainly, our own experience using individualised
funding, and that’s the collective for the working group. And also, our workshops and our seminars
that we did in April and our ongoing conversations with people with disabilities and families. We had
those conversations about what supports, what would be good, what makes… what would help you
make this all work for you or your family member.
People had told us about what their concerns were and we could start to think about how we could
support people negotiate these changes. So, the first thing I suppose we’re looking at is planning
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support. So, this is support you might get before you go to the National Disability Insurance Agency.
So, before you turn up there, it’s really good to be thinking about what your goals and aspirations
are. Like, hey, have… you know, for a lot of people, they’ve not even been asked what their goals
and aspirations are.
So, in some ways, we thought about some informal ways we can support people with peer support,
like, a planning café where people can come together and share ideas, experience, and consider
possibilities and hear about what’s going on in the community and imagine possibilities beyond
what’s traditionally available, what we currently know in the disability support system. But, there’s
also a need for more formal planning support, where families and people with disabilities undertake
a really detailed… undertake detailed planning and when this process takes, you know, involves
really deep and rich conversations about where people’s passions are and where their gifts are and
what… how the right supports, you know, enables people to pursue their passions and their dreams.
Without… sorry, with a support system that pretty much denied choice and control, we’re really
aware that people with disabilities and their families require support and assistance to build their
capacity and that’s just, you know, part of the whole process, I suppose, that we see that CDAH will
be involved in.
We want to provide information referral and have resources readily available for people. We’re
really keen to develop a knowledge base about some of the technical issues involved in the NDIS, or
individualised funding. We want to help people when they have their package of funding, when
they’ve come back from the NDIA with their bundle of funding, and we want to help people
assemble those packages. And that might involve quite a bit of shopping around with disability
services, or even community services, to find out what’s available and what will best meet people’s
needs so that they have choice and control over their lives.
Down the track, we’re looking at brokerage and fund management and, importantly, this includes
people with disabilities and their families acquiring the skills, so they can manage their supports
themselves. So, in some ways, you know, the success of the Community Disability Alliance might be
defined by when people no longer need us.
People want to choose their support workers. We really hear that a lot, you know, that’s really
important. They want to be able to do the choose who supports them, when, how and why. And this
‘cause it gives great freedom and flexibility. But, people are also daunted by this process of
management, and I think it’s really important that we actually, you know, develop some resources
and some training for people to build their capacity to manage the human resources that are there
providing their support.
I suppose, all of this continues to be a bit of a challenge without core funding, but I’ll pass over to
Belinda for the final part.
BELINDA EPSTEIN-FRISCH:
Going in the wrong direction. Sorry.
Just some final challenges that we face at the moment. The first and foremost is that we don’t have
core funding and we are probably unlikely to ever get core funding. Although, we’ve certainly made
our approaches. We certainly have lots of submissions out in lots of places for grants, but, you know,
what we’re… CDAH will be doing is competing with organisations that have a long history and
additional funding that has come from fundraising events and the like, together with, at the other
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end of the spectrum, a whole range of new consultants that will come into the marketplace, who are
working, you know, perhaps individually with the infrastructure at the kitchen table and whose
overheads are going to be low.
So, it is a challenge. Certainly, in the capacity-building money that the DisabilityCare Australia is
talking about, we understand that there may well be some of that for service transformation. And, if
that is the case, we’ll be making the case very strongly that, if there’s money for service
transformation, perhaps there ought to be some funding for developmental, you know,
development of organisation such as CDAH, user-led organisations that are coming in for the very
first time.
One of the challenges that we’ve also had that I think Cath and Linda both referred to is the whole
notion about what should be free and what should we be able to charge for? The people who are
attracted to CDAH have all come from strong – not surprisingly – strong social justice perspectives,
where building the capacity of people with disability is something that should happen as of right. So,
the notion of people having to pay, there’s a kind of a discomfort, there’s a sense of how do we work
around it? If we’re successful in some of the block grants that we’ve been seeking from philanthropic
organisations and big companies and the like, then we’ll be able to be out there providing a whole
range of capacity-building activities free of charge to people.
But, you know, it’s a tricky business out there. And so, one of the other sources of funding that we’re
hoping for is that when people go to DisabilityCare for their assessment, that they’re actually talking
to, as part of that assessment process, about their own capacity-building and developmental needs.
Not just in terms of the lifestyle support people need, but if people want to actually be able to work
together with others, you know, improve their own skills at visioning and planning and bringing
others in and developing informal support and being able to direct their own support now and into
the future, that they should be able to get some resources as part of that and that they might be
things that people might use at CDAH as well.
So, it’s kind of in that funding area, but we’ve got, as everybody said, a strong working committee
that’s brainstorming and out there trying to do what we can to make this a viable organisation.
Here’s the website: www.cdah.org.au and you can send us an email at info@cdah.org.au and there’s
a mobile number to contact us. We’re a small organisation, but I think with a viable future and I
really recommend to you that you look at the resource that was… the action research that was the
other part of our project, because it tells our story in more detail and provides some really useful
resources that will help others who are interested.
Thank you.
(Applause)
LYDIA ROSS:
Thank you very much. That is the end of our session for this afternoon. I’ve just got one quick
announcement. If you are missing a hotel key, one key has been found and is down at the
registration desk. So, if everyone can check their pockets, make sure they’re not missing anything.
We are now going to break for just under 15 minutes and the last session of the day starts in this
room at quarter past four.
Thanks very much.
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