Melbourne Room
Day Two
User Led Disability Organisations – Part One
LYDIA ROSS:
OK, well, moving on to our next session for this afternoon. And I have with me here the team from
Lumin Collaborative, who are going to present their practical design project. And Lumin’s work was
really around what does self-managed funding and individual packages mean for people? And what
can we do to make sure that people are able to get the best out of those arrangements, while
minimising unintended consequences and managing risk effectively? So, I shall hand over to Colleen.
COLLEEN JOHNSON:
Thank you, Lydia, and good afternoon, everybody.
I think forward, is it forward? Ah, no, there we are. OK.
We are obviously embarking on a very exciting time and the biggest change in the disability sector in
Australia ever. And, one could say, internationally. There will be a lot of successes over the next
while, but there will also be some glitches. And, based on the premise that the DisabilityCare
Australia is for everybody with a disability, we have looked at potential unintended consequences in
the scheme as it infolds and strategies and safeguards that could be put in place to address that.
We have had discussions with a lot of lovely and knowledgeable people around Australia. We visited
each jurisdiction and we talked to people with disabilities, with parents, families and carers, with
advocacy agencies, with disability program personnel in all of the state and territory jurisdictions.
And, importantly, we talked with public guardians and advocates in each jurisdiction and complaints
bodies, as they have a huge body of knowledge about problems and issues for people with current
arrangements. They’ve also been studying what is to come and have a sense of what would need to
be put in place that would need to change in the future to avoid some of the practices and issues
that we’ve had with four people in the past.
We looked at literature on overseas schemes and we also looked at documentation, evaluations and
had discussions with state people about various trials and schemes that they’ve had in self-managed
funds to see what learnings there were there about issues and potential unintended consequences
for people. We incorporated the learnings from overseas and the documentation and schemes
together with the wealth of data from the consultations to provide our findings.
Just having a look at some of the key messages from overseas schemes. Firstly, the nature and the
scale of the process we’re embarking on in Australia is unprecedented. If we look at Canadian and
US schemes, there are lots of them. They tend to be fairly small-scale and often with quite modest
allocations for people. So, they’re certainly not on the scale that we’re embarking with here. The UK
scheme is potentially very large-scale, but, to date, the take-up of direct funding and self-managed
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arrangements is still very low. There are common findings and experiences from all sorts of national
schemes as well as smaller trials and schemes. There are lots of reports of increased satisfaction on
the part of participants, decreased family and informal caregiver stress, decreased unmet needs. A
lot of people have been able to turn their packages into increased hours and they’ve had greater
satisfaction with supports. And there have also been increased employment opportunities.
All over the world, there are concerns about shortages of support workers. And that’s led to
concerns not only about quality assurance and risk and issues of balancing the need for safeguarding
and some forms of registration of providers with individual choice and control. And, also, concerns
coming out of an emerging unregulated market. So, in some places, there have been large numbers
of migrant female workers, poor employment conditions, minimal training, sometimes no training,
low wages. There’s also higher turnover rates for people with self-managed programs and
employment conditions that are very difficult, often, for people to accept or want to work with. So,
there have been recruitment problems, retention problems, and largely, an inadequate supply of
highly trained and skilled support workers.
We’ve also seen a pattern internationally of varied take-up. So that, in the UK, the take-up of
personal budgets is still low and the take-up is slow in rate. More so for direct funding. This has also
been the case in Canada. Direct payments have also varied very much by groups of people with
disability, so that they are more common with younger people, rather than older people, and people
with physical disabilities, rather than cognitive or psycho-social disabilities.
The arrangements all over the world have varied and this is seen as something that is important to
recognise that no one arrangement or blueprint will suit everyone and we must have a choice of
individual budget arrangements. In Canada, for example, in most of the schemes, people either
largely continue as they were with a state authority sourcing supports and providing supports and so
on, or they do everything. And that means that they have to be a direct employer and do things like
taxation and group certificates and have insurances and so on and so on. So, it’s important to have a
range of options, not an either/or.
And what’s also been recognised is that it really is essential to help people in using the scheme,
because choice and control only mean something if people have adequate help with all of the
planning and organising involved in managing supports. And one way of doing that that’s been
successful is agencies run by and for people with disabilities.
Largely… lastly, families and carers schemes can work very well for families and carers, but they do
need to be involved in the assessment processes. They need to have access to good information and
that support in managing packages, not just left on their own, and negotiated contingency plans.
Families are often not able, or loathe, to take on management responsibilities, because they’re
rather concerned about being abandoned and left to sink or swim. There’s no firm evidence that
these direct funding or personal budget arrangements save money, but there are early indication
that they may cost less and, in fact, people in many instances have been able to take their package
and turn them into more supports. One salutary lesson from the UK is that arrangements there have
been beset by excessive bureaucracy.
The… an evaluation of the UK schemes, as a way of finishing this, is to say that the employment
pattern, support structures and questions of equity in the UK schemes are not yielding, at this time,
which was 2009, strong positive outcomes for the generation of older people, or people with more
complex needs. We had a wealth of findings, as I said, from literature evaluations, but also, from
extensive consultations, and we wanted to present that in a way that made some sense in terms of
the operations of the DCA. So, we looked at, or devised, a program logic for the operations of the
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scheme and then looked at all of the processes involved. And you won’t be able to read that, but it
talks about approach and initial assessment when people first come in contact with an agency to
assessment, support planning, sourcing supports, monitoring and evaluation and then, the policy
and statutory frameworks around that to support a system and also, leading to the impacts and
outcomes that we’ve devised from the legislation. And we’ve used that as a way of structuring our
findings, looking at unintended consequences in each of those phases and potential strategies and
safeguards.
So, I’ll hand over to Richard now, who will talk you through the findings.
RICHARD BRUGGEMANN:
Thank you, Colleen. In the work that we present today, this is going to be the stuff that has come out
of our consultations, it’s not our views, and we thank all of the people that have been involved in
that process.
If I had to sum this up in a sentence, I would say that we had a two-tier response towards the
implementation of DisabilityCare. People with physical disabilities were, generally, very optimistic
that it would do what they wanted. One person summed it up, “I’ll have my plan, I’ll get my money
and people can get out of my life.” And I think for people that want that, fantastic.
People with intellectual disabilities, disability complaints organisations, public advocates, public
guardians and advocacy agencies were less sanguine about the changes. And we… when we met
with one group, they said, “We…” you know, basically they were talking about the petty meannesses
that they endure every day, that people read their mail, come into their rooms without asking, that
they boss them around and they punish them if they don’t do what they’re told. And they were
saying, “We don’t think it’ll really change.”
So, there was a degree of pessimism amongst that group and, as we go through this presentation,
we’ll actually see that most of the issues that we are concerned about are those that affect people
with cognitive disabilities and other psycho-social disabilities.
So, if we look at the first instance in the… at the approach and initial assessment part, and I’m not
going to read all of these, because we just won’t have time to do it. But, we’ve just plucked out
some. Some people will be particularly vulnerable and at risk and will not be identified. Some people
don’t recognise that they’ve got a disability. People are not going to approach and they may not be
included. People who are engaged with things like the criminal justice system, the child protection
system, or who need forensic services, again, will be a group that people were believing won’t work
particularly well.
In response to those, the sorts of strategies and safeguards that we saw being important were clear
eligibility criteria, local access points, and by local we mean able to respond to the police to deal
with an issue that night, because that’s where many of these issues emerge. Appropriate flexibility in
the tier classifications and no wrong door. And outreach services I’ve mentioned. And clear
arrangements about the responsibilities of mainstream and specialist agencies, particularly now that
those things will be done not just in different government departments in the state, but between
two levels of government.
In the assessment process, we saw a number of potential unintended consequences raised. That
choices and opportunities would be restricted, that some of the decisions would be dependencymaking and, in a number of the jurisdictions, we were given evidence of where people were wanting
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to make decisions that would make them more dependent and it comes down to, can you choose to
be more independent? Is that where choice goes, or is that a choice you can’t make, so there are
some things there that have to be dealt with?
And, again, the safeguards were the assessment processes themselves, them being robust. There
being developmental, so that, particularly for people with cognitive disabilities, that they are based
on the assumption that people are here now, but their skill level may be there later on with the right
supports and the wrong supports may keep them at that level of dependence for the rest of their
lives. That there are a range of interventions and supports that are needed and that, for some
people, rather than an individual program, there may need to be a program approach. And, in South
Australia, the services there were criticised very roundly by the coroner a few years ago, when a
young man with Asperger’s hanged himself and where he’d been provided an individual service. And
the coroner was saying this guy needed to be in a program where there was somebody in charge
who knew what was going on. That there were processes to deal with the things that go wrong and
not just, sort of, tendering the job out to an agency that, at the end of the day, although a very good
agency, wasn’t able to provide the support that was needed.
In the area of support planning, again, there are a number of things that were identified. Some
people will do better when they’re assertive, articulate and have less complex needs. Self-direction,
for some, will take too much time, or it’ll take a lot of time. We talked to one advocacy group and
they talked about a guy who had come out of an institution and it took them about 10 weeks to find
out what it was that was the thing that was important to him. Are we going to have that amount of
time? Are we going to put that amount of effort into it? Because, if we don’t, we’ll get second-class
solutions for people and they won’t be the solutions that’ll be important to the individuals.
One of the concerns that we also heard was the inadequate attention paid to transition points in
people’s lives. And the inadequate flexibility and… of services and, particularly, where those things
impact on mainstream services, for example, like transport in remote areas. Dependency-making
choices, I’ve already mentioned. Funding solutions, rather than the requirement to implement parts
of a plan focusing on things that are valued in the community. You know, one of the things we heard
often was that, you know, when you’re dealing with trying to get people involved in community and
you’ve got a funding process, it often, sort of, defaults to, “Show me the money.” And we would be
very concerned if the only solutions, particularly for people with those significant levels of cognitive
disabilities, was, basically, service-based solutions.
Some confusions about roles, you know, enduring power of guardianship, power of attorney, how
does that fit with nominees? Who will be nominees? Will parents be nominees? Parents are usually
a very positive force in the lives of people, but we also heard many instances where parents were
not positive influences, in fact, where they impeded the development of their sons and daughters.
Potential strategies and safeguards. Choice and control injected into every element of the process.
Supported decision making. And it’s so important to have heard the work of ADACAS and the people
in the room before us about ways in which people with intellectual disabilities and other cognitive
disabilities can be involved in making their own decisions. That the processes need to be iterative.
That, you know, you take a step forward and it doesn’t work and you try again and you… doesn’t
work and you try again and you keep going until it does work. And dealing with conflicting needs,
particularly in… amongst, for example, people from (inaudible) backgrounds, where there may be
cultural issues about the role of parents, and particularly fathers, in the decision making process.
That there… that plans have explicit goals and that they are followed through. I can’t tell you how
many goals I’ve seen that, sort of, sit in a filing cabinet until they are renewed the next year. And the
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guy who had as his goal that he wanted to go fishing never goes fishing. Unfortunately, there’s still
too much of that and plans without action are, basically, useless. There needs to be arrangements to
deal with unforeseen events and crises, and, once again, this means that at 2 AM in the morning,
there needs to be some capacity to respond with something worthwhile, otherwise we’ll find people
with cognitive disabilities spending their times in prison cells and police watch houses. And it’s
important that there’s some process to deal with those issues.
There needs to be an option for building an ongoing case management. One of the things, one of the
big differences we saw, was that for people with physical disabilities and, perhaps, some other
disabilities, you plan your life, manage it, you are responsible for the outcomes, you judge whether
you’re doing well. For people with cognitive disabilities, it will not be that simple and someone will
have to be doing that for you in many instances. And making sure that you don’t get exploited.
Sourcing supports. We’re moving quite quickly here, because we’ve not got a great deal of time to
go. We were really concerned about the limited choices, particularly in some areas. The providers
who will be able to be involved and perhaps also the providers who’ll be squeezed out of provision,
not because they’re providing bad services, but because it’s just such simple things as not being paid
in advance. And that will benefit large organisations that have got healthy bank balances. Small
organisations may fold under those circumstances and it’s often been those small organisations that
have been innovative.
An over-reliance on the market to meet demand and quality and quantity. Do we see that in other
aspects of our lives? How many of us are happy with our telecommunications provider? Do we do
anything about it? Are market forces effective there? Why do we need an ombudsman to deal with
these issues? We can’t necessarily guarantee that market forces will fix these things. Again,
dependency-making and we’ve seen this, particularly, in one program with day programs, where,
basically, no one moves towards employment, because if you did that, you wouldn’t be paid to have
them into your program. So, the actual system is structurally set up to keep people dependent.
People getting fewer supports than they expected in the past. Opportunistic providers targeting
people to manage their funds. And a lot of the commercial practices like loss leading, and we’ve
heard an anecdotal story, we haven’t been able to track it down, of loss leading. And client capture,
like, when you’re in, don’t talk to other people, we, you know, we don’t want you to be getting silly
ideas about other things that might be possible in your life.
The inappropriate use of funds. It’s going to happen. We don’t want to dwell on it, but we think that
it’s a part of the planning process to ensure that the money is spent on the things that it’s meant to
be spent on.
Yeah, now, I’ve got a bit out of… so, there also need to be a range of options for choice and control
and self-management. Not just the employment of staff. We heard before that if you have to employ
the person, pay the tax, et cetera, it just makes it too difficult. There are independent contractors.
There is an array of ways in which people can engage the people who support them and, where you
have a cognitive disability, you may not be able to make all of the choices, but there will be some
things that you’re able to decide and you should be able to decide the maximum number of those.
There’s a need for online, up to date databases, developing a comprehensive workforce strategy,
dealing with the vexed issue about whether families can be paid to provide supports, and there is
some information from overseas that’s important there. In the area of monitoring, evaluation and
quality assurance, we believe that it’s important to… for there to be a process of monitoring, dealing
with crises, that if we don’t deal with these things, it’ll be… it won’t. That there won’t be
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accreditation systems that focus on facilities, sorry, the accreditation systems will focus on facilities
rather than participant outcomes. And we just make the point in passing that we would want
different arrangements to become a provider in this environment, lest we have the situation which
occurs under the current provider panel arrangements around Australia and, in those arrangements,
there is still a significant amount of abuse and neglect of people with disabilities. So, what’s going
wrong in those systems that those things happen? There needs to be some values base.
I’m getting the message here that we need to keep moving on. The… some of the safeguards. The
support plan is the cornerstone of monitoring and evaluating outcomes and outcomes do need to be
monitored. They are not, at the present time, you know, a lot of organisations have got very
fantastic masthead statements about what they do, but there’s no mechanism for actually seeing
that they actually do them.
Specific provision in support plans for ongoing case management where necessary. Quality
assurance framework based on outcomes. Clear and effective sanctions for poor performers.
Approved providers to report numbers and bases of complaints, actions taken. Mandatory reporting
of injuries, unexplained incidents. And I’ll let you read the rest of those.
The role of the DCA in its capacity and operations, again, the concern was that it would become a
transactional model, rather than one built on enduring relationships. That it would become rulebound, and that equal assistance rather than equitable outcomes may be the modus operandi. And,
again, the ways in which we deal with that are to ensure that the voice of all people with disabilities
are heard in the directions and governance of the… of DisabilityCare. And I’ll just make the comment
in passing: in this gathering that we’ve had here in the two days, there’ve been an immense amount
of accommodations for people with physical disabilities and sensory disabilities, what
accommodations have there been for people with cognitive disabilities to understand what is going
on? And, you know, it’s very telling that…
(Applause)
RICHARD BRUGGEMANN:
…you know, how many of those people have genuinely been able to participate and be involved in
this, you know, ground-breaking event? So, I think that that’s one of the things that we really are
concerned about.
I’m going to skip… we’ll just go through, Colleen, but we’ll skip the next two sections on statutory
and legislative and policy framework and the capacity-building of the system, because there are
some things that we need to just recognise, that need to be addressed as we move forward in this
process.
The first is that there needs to be… we can’t rely on market forces is my view. We need a
comprehensive national legislatively mandated complaints system based on the Victorian model.
The Victorian model provides a positive, pro-active approach to complaints and organisations
dealing with them. We need that at a national level. We need consistent national adult protection
measures, building on the Victorian model and including community visitors. Capacity to investigate
reported abuse and exploitation and I need to say it here, some people believe, also, mandatory
reporting of these issues when they occur would be a great way in which these things could be
brought to the attention of the decision makers.
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A comprehensive system to monitor and measure outcomes. I recently did a review of day programs
in South Australia. The stated aims of these programs are that people develop skills and meet new
people and have new opportunities. And what information does the government get to indicate that
those things are happening? Zero. Not one report from organisations to the funding body to say, “72
per cent of our clients met their goals this year.” So, if you don’t measure it, it’s not important, and
that’s certainly what we found in many of the programs that were offered in South Australia.
There’s a potential for the system to default to full funding of services, rather than integrating with
informal community supports. I’ve suffered this from personal experience. We had a really proactive
program to include people and communities. We then overlaid it with a funding – individual funding
– model. Within two years, the informal system was gone. It was basically, “Give me the money.”
And, if that’s all we achieve out of this, we haven’t achieved a great deal.
There needs to be an integration of principles and values with all levels of the system and I
remember, many years ago, after the Disability Services Act in 1986, that many of the senior
members of the department at the time took a personal involvement in SRV training. And, you
know, they were the ones involved in the programs. It need… we need to see that values base go
right through the system if we’re going to have the system work in the way in which we believe it
should.
We need capacity-building at individual, organisational and community levels. We need workforce
plan to deal with the emerging issues of the system. And we need, in my view, to be cognisant of the
fact that just having a whole host of new providers is not necessarily going to provide innovation.
Again, in South Australia, where has the innovation come from? It’s come from people, instead of
buying their services through a provider, using their money to make their own boutique service. And
some of those services are fantastic. Not driven by providers in a marketplace, but rather by families
who’ve had an enduring vision for their son or daughter that they’ve been able to put into effect and
to make happen through things that have actually been of interest to them and have been built on
their strengths and gifts. And I think that we need to ensure that, in this process, we don’t just rely
on market forces to make those things happen, but that we actually empower families and
individuals to make those things happen for themselves.
So, where we’ve got to is this: we think that the new system is going to be fantastic. We think it’ll
work better for some people than others. We think that, with some safeguards, particularly for
those people with cognitive disabilities, that it can also be a system that builds on their strengths
and enables them to have a really good life. And a lot of people have talked about, you know, a
particular person, you know, Ned and Fred, we’ve heard of them all during this process. Well, let me
just tell you about Charles. He lives in a unit in an institution in South Australia. He’s got no language.
He’s got no family. And how are we going to find out what’s important to him? Or, will it just be
other people making the decision? We can find out. We actually had a process, it was immensely
time consuming, it involved people observing over a long period of time, and then people observing
the observers to make sure that they were not letting their biases get into it. And it was immensely
complex, but it actually let us choose things, or let the individual choose things, like, who are the
people that he likes sitting next to? Or, did he like to have tea or coffee? You know, not mindshattering decisions, but decision that these people had never made in their lives.
And these decisions came about through taking an immense amount of time to work with
individuals to make those things a reality. And, if we don’t do that in this process, it will always be
other people who will be deciding the lives of people with cognitive disabilities. And we can do
better than that. Thank you.
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(Applause)
LYDIA ROSS:
Well, thank you very much, Richard and Colleen. That concludes the session and afternoon tea is
being served downstairs in the lobby and the next session will start at half past three. Thank you
very much.
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