Transcript of interview with Simon Duffy

    Transcript of interview with Simon

    New Asset  
    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

    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

    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

    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

    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?

    New Asset  

    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

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

    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

    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

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

    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?

    New Asset  

    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

    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

    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

    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

    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.




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