in conversation with david ellis
TRANSCRIPT
I N C O N V E R S A T I O N
In conversation with David Ellis
Andrew Holman, Inspired Services publishing Ltd, Cotswolds, Centre Drive, Newmarket, CB8 8AN,
UK. (E-mail: [email protected])
• David has been
in learning disability
services for ages,
now he has retired.
• He helped start
Valuing People and
got people with learn-
ing disabilities invol-
ved in making it.
• He was then invo-
lved in setting up the
National Forum for
people with learning
difficulties to check
on how Valuing Peo-
ple was going. They
made a big difference
at first.
• He is worried about cuts and thinks people need to shout
loudly.
• He asks everyone to keep on working to make things
better, there is still lots to do.
David Ellis is one of those people who seems to have been
around in learning disability services for ever, but not for
much longer. He has retired, and this time, he assures me, it
is for good. So what better excuse to have an ‘In conver-
sation’ over lunch about projects we have both worked on,
old times, the low down on what really happened behind
the scenes in government and also find out what he plans to
do with himself now.
David started work as a social worker in the London
Borough of Camden, not initially with people with learning
disabilities. This, however, soon changed and, after a period
with the Social Services Inspectorate (SSI), he became an
advisor on learning disability in the Department of Health
(DH). We worked together when he commissioned Values
Into Action (VIA) to undertake research work on people
with learning disabilities using Direct Payments.
This was an exciting time, but people with learning
disabilities were initially excluded from having Direct
Payments. David recalled the group of physically disabled
residents who started the movement in Hampshire: ‘That lot
were intellectually able, they had the capacity to take charge of
things in a way that other people don’t have the capacity to. In the
original days of Direct Payments it was said that ‘oh no, you can’t
be giving people money unless they know exactly what they’re
doing’, there was a lot of hoo-ha about that in the system’.
Fortunately, our work with the DH enabled us to fight for
their inclusion, and the day before our first conference and
book on people with learning disabilities using Direct
Payments, ‘Funding Freedom’, I received a letter from
the Minister agreeing to include people with learning
disabilities.
Our paths crossed again in the development stages of
Valuing People. David remembers ‘Valuing People started off
with Jim Kennedy, the chief inspector at SSI. He and I sat down
and talked about learning disability and what some of the issues
were. We thought ‘wouldn’t it be a good idea if we had a modern
strategy?’ It seemed as though everybody was rather marking
time. People were not accepting the idea of independent living and
the idea of people with learning disabilities getting housing and so
on, well nobody in the department anyway. Outside, yes, but
within government that just wasn’t a runner. This was the tail
end of the Tory administration that had very much run out of
steam’.
This must have made it very difficult, it must have taken
some tenacity to make things happen. ‘There was no political
backing or anything like that. But to cut a very long story short,
we decided it would be a really good thing to do and started to
move it forward. Over the next year or so it started to blossom’.
Following the 1997 election, we had a new Labour
government, ‘full of energy and enthusiasm’. Their manifesto
had focused on independence and choice and it was these
themes Ellis concentrated on. This persuaded the Minister,
John Hutton, to agree to do the work, and later to do it as a
cross government white paper that came to be called
Valuing People, the first new policy initiative for thirty
years. Given the government’s focus on including people in
policy development, we looked at how people with learning
disabilities could be involved in this work. Ken Simons,
from the Norah Fry Research Centre, had set up a Service
Users Advisory Group and it was this group David asked
me to look after, supporting members to input into the
strategy.
ª 2010 Blackwell Publishing Ltd, British Journal of Learning Disabilities, 38, 83–85 doi:10.1111/j.1468-3156.2010.00628.x
British Journal of
Learning DisabilitiesThe Official Journal of the British Institute of Learning Disabilities
The group, all people with learning disabilities, travelled
around England listening to what self- advocates had to say.
Importantly, they were also full and equal members of the
Learning Disability Advisory Group. With this background,
it was a natural development for Valuing People to focus on
the four areas of Rights, Independence, Choice and Inclu-
sion. The service user input and representation was signif-
icant. It was a very early example of the co-production of a
policy paper and led the way that many other disability
initiatives have since emulated.
David attributes the success of the policy development
firmly with the abilities of the team leader, Ann Gross. ‘It
was incredibly lucky, in civil service terms, to have such a great
team of people come together. Ann came from having had a great
success on the Children’s Bill and it was a real feather in the cap
for learning disability to have a civil servant who was seen as a
rising star. This makes a hell of a difference, if you’ve got people
who aren’t stars running a policy then it doesn’t go anywhere’.
Again, Labour was doing things differently and we
needed a public face to lead the policy. ‘We employed Rob
Greig to come along and help and then he took over the running of
the white paper – well, he helped to take it forward’.
Unfortunately, Ann moved on, but before she did, we still
had further ideas for developing the voice of service users
that flowed from the success of the service users’ group.
David states: ‘part of my particular role around Valuing People
was to focus on advocacy and this resulted in the creation of the
National Forum of people with learning difficulties. The forum
was seen as a good way of demonstrating that people could have a
national voice’.
And have a national voice it did with regular contact with
Ministers. ‘We went through a happy time of having a number of
people with learning disabilities who had quite an effect on the
Minister. I remember Mabel Cooper who came and nailed Ivan
Lewis about the adult placement changes. That actually made a
major difference to his thinking and we managed to get it put back
properly to where it should have been, they had made such a cock
up of it before!’ David saw self and peer-advocacy as
important, ‘They were all valuable tools to ensure that the
services that were provided were actually the services that people
wanted, not just what they were given. And therefore they would
be smarter services with less waste’.
Our conversation turned to the old Disability Act, and the
failure of government to implement the legal right to
advocacy for fear of the costs involved. It feels like ever
since then we have used various means to try to get it back
on the agenda. ‘The trick with Valuing People was that we were
trying to change policy in a dramatic way without legislation and
without any money. Although there were bits of money, it wasn’t
like a big piece of legislation with a whole load attached to change.
It felt a little bit like being in the film the Dirty Dozen..., just a few
of us going in to create change without much in the way of
resources to do it. People had to work smarter and because of that
it encouraged the growth of new ideas like In Control. That
crystallized it in a way that really grabbed the interest of the policy
makers because here was somebody who’d said: ‘look, if you do it
this way you’ll get better services and you’ll save all this money.’,
That was unbelievable’.
I had always been surprised at the take up of In Control
without the extensive research such a change should
demand. ‘The reality of course with In Control was that it was
a bit of a false dawn – yes it will make a major difference to certain
groups of people but if you try and apply the whole thing across
the board there won’t be any cost savings. There is still a central
issue with services for older people: do they really want to be
organising and supplying their own services, or do they just want
to be given them? The jury’s still very much out on that one’.
Valuing People did not have the impact we all wished for
in those early days. As a result, we had the three year
extension that is Valuing People Now with the new
co-directors Anne Williams and Scott Watkin. It took a
while for them to be appointed and get going of course, but
does David think it is having any more impact than the
original? ‘If I look at the things that didn’t work particularly for
Valuing People, partnership boards were one of the biggest
problems. They were attempting to bring together all the resources
and all the decision making under one body that would have some
power. There were very few partnership boards around the country
that have got much power and some of them have almost fallen
into disrepute. It seems as though Valuing People Now has
refocused some of the efforts and understanding about partnership
boards’.
At the age of 60, David moved from the DH to SCIE, the
Social Care Institute for Excellence, as their principal
advisor on learning disability, following an invitation from
the chair, Jane Campbell. I wondered how successful this
had been and how much attention SCIE paid to learning
disability issues. David agreed it could do more: ‘I think that
we’re in a position of needing to refresh some of our learning
disability work. We’ve done work on commissioning that was very
helpful, and on transition, but we could do with another piece of
work on learning disability which is something we’re thinking
about at the moment’.
I mentioned rumours that SCIE may not survive the
coming cut backs. ‘The answer is that we’re subject to review.
We were expecting one at the end of last year, but we still haven’t
had it. So it’s very difficult to know what the future holds. SCIE
are quite well thought of by the system, but it wouldn’t surprise
me if there wasn’t a bit of an amalgamation’.
Our conversations always turn political, and this one was
no exception. ‘We’ve got two things happening, one, the election,
and two, the financial crisis. The financial circumstances are bad
now and are going to be enormously worse this time next year,
and worse still the year after that’. Learning disability services
never seem to fare well when cuts happen. Compared to
other interest or lobby groups, we have never been good at
campaigning or shouting loudly. I wondered what David
thought about how bad it would get? ‘Well I think they’re
84 In conversation
ª 2010 Blackwell Publishing Ltd, British Journal of Learning Disabilities, 38, 83–85
going to struggle, along with everybody else. Traditionally we’ve
always had people with learning disabilities not at the top of the
pile in terms of social and health care and that means it’s easier for
your services to be cut than other people’s’.
‘That will vary dramatically from one place to another. But I
think where it will create pressures is for carers and families, there
won’t be the same resources around. It’s the ones who shout
loudest who are the ones that get, that is a fact of life. It doesn’t
help in terms of maintaining and improving services, but you have
always got it and I don’t see any hope of that changing. And as I
will require more services myself in the near future I’m going to
start shouting loudly and demand them’!
David is not giving up work entirely of course, although
he is having a ‘gap year’ to go off riding his motorbike across
other continents, ‘Everybody else has had one so it’s about time I
did! But I’m staying involved in learning disabilities as a trustee
at the Rix centre at East London University’.
There is no denying that things have moved on consid-
erably in David’s time. ‘It’s actually quite a positive view if you
think back forty years and the institutions. It has changed
dramatically for many people’. But life still is not rosy for
everyone, ‘The problem with it is we could go to some
establishments run by large national bodies and you would find
that people’s experience still wasn’t brilliant’.
What messages, I asked, would David want to leave us
with? ‘Keep on trucking is the overall message. We can’t give up.
We have set a new direction and that is about achieving
independence for people with learning disabilities. I don’t see
anybody being in a position to row back from that now, or putting
them all back into Leavesdon or wherever it was. So that’s good.
But people with learning disabilities and their families and carers
and the people who work with them and are interested in them are
going to have to continually do battle with the rest of the system to
make sure that they get their fair whack. That’s the reality of it -
there’s no sunny side up plan that we can all reach where life’s
going to be dead easy’.
In conversation 85
ª 2010 Blackwell Publishing Ltd, British Journal of Learning Disabilities, 38, 83–85