Transcript of interview with Simon Duffy

Transcript of interview with Simon
Duffy

Simon Duffy

Learning difficulties consultants Craig Jones, 18, and John
Liddell, 19, and Community Care reporter Amy Taylor
interviewed Simon Duffy, national co-ordinator of In Control, which
helps service users to have more control over their lives, about
the government’s new consultation on disability services. The
interview, carried out on behalf of Community Care earlier this
month, took place at a conference on disabled young people
organised by consultancy and development agency Paradigm.

John: What did you set out to achieve in the In Control
project?

Simon: The project wants to change the whole way social care is
organised so that disabled people can be in control of their own
support. Even if they have a little bit of a disability if you like
and need a little bit of help then they should be in control or if
they need an awful lot of help then they should still be in
control. Everybody whether they have a learning difficulty or they
have a psychical disability whether they have got a disability
because they are getting a bit older and a getting a big frailer –
it doesn’t matter – they should still be in control.
It’s still their life and it needs to be run by them.
That’s the base of what we are trying to achieve.

Craig: Which elements of the independent living part of
the project have been incorporated in the government’s
report?

Simon: One of the key ideas within the life chances of disabled
people is the idea about an individual budget which I think means
people who have a disability will be told how much money they have
to spend on care.

In control has done a lot of work with local authorities to try
and work out what that means, what the right amounts of money will
be and why one person on will get some money and another person
will get less or more. So I think that is the area where the
strategy unit have been listening quite carefully to some of the
work that we have been doing. But obviously we don’t control
what’s in that report we just tell them about what we are
doing. I think that’s probably the most important thing.

Craig: What do you think of the individual budget scheme
outlined in the report?

Simon: Okay, I think the report just talks about the idea in
quite simple terms from what I saw but what we have been doing is
working out the details.

I’m for it for two reasons. I think that if people are
going to have a right to independent living a right to be in
control then you need to be able to work out what the cost of that
right is. It’s no good to disabled people if you have got a
right to disabled living but then you have got to go through a
complicated assessment process where no body knows what they are
going to get out of it that’s not any kind of right that
anybody wants. So I think one important reason for exploring this
idea of a personalised budget is because it’s a way in which
disabled people might actually get some meaningful rights over the
money.

The second important reason is that if people want to do new
things, not just go to a day centre, live in group home but
actually want to do new stuff that makes sense to them in their
life, they want to be creative then they need to know how much
money they are going to get. You can’t do any decent
planning, you can’t do anything creative if you don’t
know what your budget is. So I think that’s the second
reason.

And can I sneak in a third

Craig:  Yes

Simon: I think the third reason which is maybe not so important
to disabled people but that is important for good government is
that in a way the government needs to know what it is going to
spend. And actually that is quite a good idea that the government
knows that this is how many people with a disability there are and
this is what it will cost if we give everybody their own funding
and that it can plan for that from year to year and I think central
government and local government do need to know what that is, they
shouldn’t just be guessing and it shouldn’t be just for
disabled people to keep having to bang on the table and demand more
and there to be no system for actually working that out.

John: Do you have any concern about what the government
is proposing in the report?

Simon: The government’s idea that disabled people should
be told how much money they are entitled to and I think it set a
time-scale of 2012 that everybody should know, I think that’s
great…To me that’s a real big step forward and if we
can pull that off and there will be a lot of work to do between now
and 2012 because I think that for a lot of people regarding this
idea  it will be the first time they have heard of it you know for
most local authorities it is a totally foreign concept so there a
lot of work to do to help people explore it.  But I think that from
my conversations with senior managers in local authorities there
are a lot of them who are up for it. There will be some people who
are frightened and a bit worried but there are a lot of them that
really want to explore this and do realise that this is the way
forward.

Amy: Are there any groups of service users that you
don’t think the In Control project measures would work
for?

Simon: In control set out to create a system that would work for
everybody with significant disabilities and we are still improving
and changing our system so we are not saying that this is the final
story about what an ideal system should look like but we still
think that the system that we designed today is able to work for
everybody. There are issues about how you give people self directed
support when there are significant risks and where there does need
to be somebody else taking important decisions on somebody’s
behalf.

But even if that is the case and it might be the case for somebody
with a severe learning difficulty, it might be the case for
somebody with mental health problems – the fundamental principle of
support available around the person and the decision-making should
be close to the person as possible it still connects as far as I
can see.

I think what we are doing in a sense is taking many of the
things we have learnt about direct payments and extending and
broadening the system so that it can work for everybody… It
creates and individual budget for everybody who needs social care
and it creates a decision making mechanism that’s right for
them.

I don’t see why those principles don’t apply to
everybody.

Craig: Given that everyone seems to think that direct
payments are a good idea but not many people are given the
opportunity to take them up do you think many people will be given
the opportunity to take this new scheme up?

Simon: Well I think direct payment started from a very low base
which was nobody or next to nobody getting it and year after year
more and more people take it up. So the growth year after year has
been very high. So there seem to be plenty of disabled people
willing to take the step of taking on direct payments. It’s
taken a while for local authorities and service providers to figure
out how to support people, how to open up their systems, and
I’m sure as we explore other forms of individual funding like
personalised budgets the same will be true. People take several
years to create a system that will work for everybody. But
ultimately I can’t see that there will be many people saying
I don’t want any control over my service, I don’t want
to know what resources I’m entitled to. I’d rather you
took all those decisions away from me and away from my family and
away from my friends and do all that for me. I don’t want an
individualised service, I just want to be in something that you
created for anybody. Just stick me in that. I don’t think
that there will be a lot of people queuing up to say that.

There might be a few people who at the moment just feel a bit
confused by the whole system and resist taking on any challenge.
Change always takes time and some people are more willing to change
than others and that’s perfectly natural but ultimately I
don’t see any reason why the idea of personalised budgets
won’t work for absolutely everybody.

John: The report doesn’t contain any figures on how
much money the government will provide to carry out the changes.
Does this worry you and do you think the changes will require a lot
of money?

Simon: Well people will always argue that there’s not
enough money or that there should be more money in the present
system. But it’s worth thinking and remembering how much
money is already spent on social care alone. I think that the
figure that I saw quoted recently was £15 billion is spent on
social care and this is for the whole social care population and if
you divide the number of people receiving any form of social care
by 15 billion it’s about £9, 500 per person and £9,
500 per person isn’t peanuts. That’s quite a lot of
money. If you look at the figures for people with learning
difficulties who generally are people who need more support I think
the whole budget for people with learning difficulties, the whole
local authority budget I should say and divide it by the number of
people with learning difficulties who get any kind of service it
comes out at £25,000 per person or there abouts. Again
that’s a very significant amount of money and I’m not even
counting in money that’s in the health service money
that’s in the benefits system money in education and
employment I’m just looking at the money that local
authorities spend on social care. So is there were enough money is
there not enough money is a difficult question to have a final
answer t o everyone will always want more money but I think its
unarguable that there is a significant level of funding in the
present system it’s just spent very poorly. It’s spent
on services and systems many of which people don’t want but
which serve their own interests so the challenge will be to move
money that’s currently spent on services into the hands of
disabled people. That’s a big management challenge. We know
that it can take years to pull that off.

If you take for instance a typical day centre it might employ
dozens of staff and if you actually looked at how much money was in
that day centre you would actually find that it was about 10
thousand pounds per person using that day centre now 10 thousand
pounds in the hands of someone with a disability can go a long way
to give them a very full meaningful day time life. But I
don’t think there are many people using day centres who feel
that is what they are getting for their 10 thousand pounds.

So I don’t think the main challenge is about increasing
the amount of money. I think that is an issue that will always be
with us. But if you look honestly at what money is in the current
system it is very significant it is just spent very poorly.

Amy: What role do you see social workers as having in
the system of individualised budgets?

Simon: I think there are two big roles. They might be slightly
different roles and we might need to think about the distinction
between these roles. But there is a role that is probably a little
bit like the care management role which is about letting people
know how much money they are entitled to and checking things are
okay and In Control has done quite a lot of work with care managers
to help them rethink their role and modernise the role of care
managers and some time to slim it down as well. To work with local
authorities to show them that many of the functions that care
managers carry out now could be done by disabled people themselves,
or by families or by other independent people. But that is not to
say that there isn’t going to be a significant role for that
care management function and if fact we hope In Control hopes that
if we could reorganise the care management function it would
actually give care managers the opportunity to do their job
properly with a small but significant number of people who really
do need to access care management.

In the second part I think that in a sense social workers’
old role perhaps might be rediscovered  in this new world. What
some people will need is something that might well be called
brokers that might be people who can help them figure out what to
do with their individual budget. I think that’s very
different to the care management role I have just described to you.
And lots of people can do that not just social workers but social
workers either working for a local authority or who are independent
of a local authority might be one of the number of groups who have
a valuable skill to offer to disabled people and which disabled
people may choose to purchase from social workers.  I think the
interesting thing will be is what needs to change is also a balance
of power here so I’m talking about a role where social
workers are not in charge of the disabled person but they are
offering a service to disable people that if they value they will
take up and pay for.

Amy: So social workers could become the brokers to help
disabled people to navigate the services available?

Simon: Yes they could but I don’t think we need a closed
shop on that. I don’t think we need to say right we will now
create a whole new professional system of navigators and only
social workers can do that. I think we need to explore various
options and I also think we need to leave the door open for people
who don’t actually feel that they need those systems
navigators – not assume that everybody always needs a professional
to come into their life and tell them what they need to do. In lots
of areas of life where a bit of independent help can be valuable
but we don’t need to create a whole industry of independent
help.

Many people can figure things out for themselves as long as we
make the system clear, open, clear entitlements, in other words we
really need to avoid bureaucratising the social care system as we
change it. We need to make it easy for people to be in control easy
for them to make their own decisions easy for themselves to
navigate the services.

Amy: Does this require a cultural shift to get social
workers to let go of the power?

Simon: A bit. It’s a cultural shift, it’s also
unpicking distinct roles. If you like the role of care management
the role of system navigator the role of somebody watching out for
vulnerable adults those are actually very different roles and if
you muddle them up you make it very difficult for social workers to
make sense of their job. Its very difficult for a social worker to
help people navigate systems so it’s not navigating a system
is it its just getting control of their own life and do what they
want to do with their life.

It’s very difficult to give people that role and at the
same time give them a whole lot of health and safety
responsibilities so that they have then got to go in and check that
people are safe they have got to check about arrangements that
aren’t working. I think those are different roles and
it’s a culture change but its also a sophisticated system
changing the development of some different roles for social workers
I think. To some extend I think it’s a rediscovery of the
older purpose of social work. I don’t think that all of these
things are new I think some of these things are very old and we
kind of lost our way a bit.

Amy: Does this spell the end of social services
commissioning?

Simon: I think obviously you know in a world where most of the
purchasing power is in the hands of disabled people then commission
changes character radically. There are a couple of things you need
to say about that however. First of all it’s going to take us
some years to get to that situation so we don’t need less
commissioning in those years we need more. We need more thoughtful
creative commissioning. Commissioning like helping centres for
independent living extend their roles and work with a wider group
of people, commissioning like getting service providers competent
to offer genuinely individual services and to manage individual
services on peoples behalves. So actually I think there’s an
awful lot that commissioners will need to do. Of course in the
long-run their role will be changed because they wouldn’t be
managing so much of the money but even in the long-run I think
there will still be some kind of strategic overview. I’m not
sure that we will want this to be done by professionals on their
own in offices or in commissions I think actually as much as
anything this is something that disabled people themselves will
need to play a big role in  and if you go to some countries like
the United States you will see that in each state they have what
they call a development and a disability board which is where
professionals and disabled people come together to set out long
term planning objectives for their community.  Now I think that
kind of role which is very similar to commissioners will need to
continue and of course there are many commissioning roles that
don’t depend on controlling the money but are about
relationships, so for instance making sure that disabled people get
full access to decent education. It’s still a commissioning
task in a sense it’s just not the business of going and
purchasing lots of places in group homes or paying for a day
centre.

The government report is clearly just the beginning but if you
think about personalised budgets as simply people telling you what
you are entitled to up front and that seems to me like a pretty
good idea I would rather be in that position than be guessing or
being stuck in some ongoing assessment process or fair access to
care process where I just don’t know what my rights are.

Amy:  The government’s idea goes beyond social
care doesn’t it?

Simon: Yes. I don’t know how all these details are going
to work. In Control has started to experiment with some of this
taking some forms of money from health and education and including
them within the individual budgets. But to be frank that is even
harder than the initial task of figuring out what the social care
bit of the funding is.

Amy: The government’s idea is much wider than this
isn’t it?

Simon:  That’s right. We are working with health and
education so in Wigan for instance we are doing some work where
education funding will be able to be included in the planning and
the fundamental idea is very sound which is that there might be
lots of different sources of funding in different areas but that
isn’t what the disabled person is interested in. They want to
actually figure out a solution that makes sense of them and there
solution isn’t going to come neatly tied up with different
government departments. So if there are different forms of funding
it would be much better for the disabled person if they could be
consolidated in one sum that they can use flexibly and if they want
to use a little bit more to support their employment activity or a
little bit more to support their education activity or a little bit
more to improve their housing options then why should we stop
them?

It is very important because the system is very prone to tie
resources up to connect resources to particular activities. 
That’s how the system works. So from the education
department’s point of view you can see it’s reasonable
for them to say well this is education money it should be spent on
education. But we need to move to a position where it is actually
the disabled person who can make the right judgment and the right
balance of judgment about what exactly they need. We don’t
need them to be just trying to play by every single government
department’s particular set of rules.

In 99 per cent of circumstances it’s the disabled person
who is going to have the best idea of what to make as a priority
especially if there are a few people around who can at least
challenge them and ask them and say how is it going? Which I think
is an important part of the system which isn’t being taken
away. There’s still accountability there in the system but
the leadership is transferred to the disabled person.