Direct Payments Campaign in the U.K.
Presentation for the ENIL Seminar in Stockholm, June 9-11, 1996
The Direct Payments campaign in the UK was started in 1989 by the BCODP
IL Committee as one of its primary objectives. BCODP (British Council of
Disabled People) the national, democratic, representative organisation of
disabled people in the UK. BCODPs Independent Living committee was formed
as a result of the founding of ENIL (European Network on Independent Living)
in Strasbourg in 1989 so that it could advise, develop, monitor, campaign
and co-ordinate IL activities and developments in the UK and also feed into
the European scene through ENIL. The Direct Payments campaign was initiated
in order to change the legislation to make it easier for local authorities
to establish Direct Payment-schemes.
Direct Payment Schemes and the Legislation
The original Independent Living schemes were first set up in the UK in the
early 1980s. Throughout the 1980s they developed slowly but they were still
few in number and only operated in a limited amount of areas in the country.
Most authorities were not keen to take on Independent Living schemes because
they either considered them too risky or were wary of handing over all the
control to disabled people. Direct Payment schemes represented for the first
time a shift of power to disabled people. Most authorities who ran the schemes
either did it because it was a new idea and way of providing services, or
had empathy with the Independent Living philosophy in terms of giving more
choice and control in a disabled person's life. Other factors which restricted
the growth and development of Independent Living schemes was the dubious
and varying interpretation of the appropriate legislation.
After Hampshire had been running Independent Living schemes for three and
a half years, the authorities suddenly reviewed the situation when the county
solicitor and treasurer became aware of the uncertainty of the legislation
and were poised to stop the schemes. Fortunately, at the same time a report
came out from the Audit Commission, which is an independent organisation
that monitors the performance of local authorities. The report highlighted
the Independent Living schemes in Hampshire as being innovative and good
community care practice. This proved to be the saving grace, and on hearing
this the county solicitor and treasurer then changed their judgement and
the schemes were saved and allowed to continue.
The reason for the confusion and the different interpretation of the legislation
was because of a 1948 Social Security Act about Social Services provision.
In this act it states that a local authority can only provide services and
cannot provide cash payments, hence the stumbling block in the law. Even
though Hampshire changed its mind there are still authorities who will not
go ahead with Independent Living schemes which they regard as illegal. The
situation was made worse in 1992 when the then current Minister of Health,
Virginia Bottomley, sent out a circular to local authorities stating that
Direct Payment schemes were illegal. This exasperated the situation, and
even authorities who had been running schemes up until then withdrew them.
This is why the Direct Payments Campaign is so important so it can change
the legislation and clarify everything in black and white. The way local
authorities got around this was by paying the money into a third party i.e..
a disability or voluntary organisation for instance, and then they would
pass the money onto the disabled individual. It was a kind of loophole in
Direct Payments Campaign and Lobbying
The Independent Living movement believes that Direct Payment schemes should
be as of right and that is why a change in the legislation is probably the
second most important priority in the issues of disabled people after comprehensive
civil rights legislation. In the early 1990s when BCODP IL group embarked
on its Direct Payments campaign, it got together with the Spinal Injuries
Association and its parliamentary officer Fidelity Simpson who was an expert
in lobbying tactics and parliamentary affairs. This group then drew up a
tactical strategy for bringing about Direct Payments legislation. Key disabled
people from both these organisations with direct experience of running their
own schemes worked together with Fidelity targeting possible key allies
of Members of Parliament and politicians who would support and fight our
cause. Many letters were written to local and national politicians seeking
support. Numerous awareness raising and briefing meetings were arranged
and relevant publicity drawn up to disseminate information in order to make
the issue public and clear, together with articles in both the mainstream
and disability press.
Lobbying and the Private Members Bill
Not long after the campaign started, the group found a very keen and influential
care and supporter. He was Andrew Rowe, a conservative MP. He fully understood
what we were trying to achieve as he had first hand experience with one
of his constituents, a disabled woman who was running her own Independent
Living scheme and at the same time running her own business. This left a
deep impression on Andrew Rowe who then decided to put together a Private
Members Bill on Direct Payments Legislation. In British politics, a Private
Members Bill is another way of attaining legislation that is not part of
the Government's proposed agenda. It is a difficult way of achieving success
but over the years many innovative pieces of legislation have used this
parliamentary procedure to achieve their results. It is long and arduous
and prone to many pitfalls and political manoeuvring, especially if the
government does not support it.
Anyway, Andrew Rowe attempted this approach twice in three years and both
attempts failed. During this time when Andrew Rowe was trying to progress
his Direct Payments Bill, the campaign group organised a number of meetings
with key politicians to try and influence them about the issue. These included
the then current Minister of Health, and the Minister for disabled people.
Both of these politicians expressed how much they appreciated Independent
Living schemes, but neither were prepared to take serious action and publicly
support them. Our understanding of the situation then was that the treasury
department was not in support of this kind of legislation because of the
economic argument of it costing too much. These developments exasperated
the campaign group and the Independent Living movement; the BCODP Independent
Living Committee then felt another course of action was needed to promote
the Direct Payments campaign and develop its strategy.
However, all was not lost during this period as we were able to gain a lot
of support from a number of important national statutory organisations,
in particular the ADSS (Association of Directors of Social Services) who
passed a motion at their annual conference, supporting the need for Direct
The Way Forward Through Direct Payments Research
After the failure of Andrew Rowe's Private Members Bill and the tactic of
trying to influence prominent politicians, BCODP felt that the best way
forward now would be to commission a piece of social policy research to
come up with some good evidence about the cost implications and effectiveness
of Direct Payment schemes and how they improved user satisfaction and quality
of life. BCODP drew up a workable proposal to carry out this research and
was then awarded a grant from the Rowntree Foundation to do this. The next
step was to contract the Policy Studies Institute who are a very notable
and influential research unit to do the work for us. We felt that by using
the PSI the research would have an impact on politicians and other important
policy makers because the PSI was highly regarded for its social research
and independence. Frances Hasler will now highlight the main features and
findings of the research.
Direct Payments Research
Our research compared disabled people using services with disabled people
using direct payments to employ their own personal assistance. It looked
at the quality of support, at costs, and at user satisfaction.
It found that direct payments offer disabled people a higher degree of choice
and control, and were more reliable than service provision. Service users
reported much higher levels of unmet need than payment users. They were
four times more likely to have difficulty in obtaining back-up for regular
support than payment users. They were less likely to have assistance delivered
in the manner they wanted. These findings are probably not news to most
people in the Independent Living movement, but it was useful to have them
documented by an independent research agency.
On costs, our research found that support financed by direct payments was
on average between 30 to 40 percent cheaper than equivalent service based
support. At the time of the research the average hourly cost for direct
payments users was £5.18; for service users it was £8.52. There
was a marked difference in overhead costs - services had between 20 to 30
percent overheads, payments 5 to 15 percent.
The research also found that people receiving direct payments had markedly
higher levels of overall satisfaction with their support arrangements than
service users. This was mainly due to the increased choice, control and
reliability offered by direct payments. Like other studies, it found that
the highest level of user satisfaction existed where users had advice from
an organisation of disabled people.
Our research was the first study to combine the issues of cost and quality.
It showed that on both counts direct payments are preferable, both cheaper
and better. Information from our research was used by our allies in persuading
the politicians to bring in direct payments. (We could not always get direct
access to the Minister, but we had strong allies in the House of Commons
and among Directors of Social Services who pressed our case.)
Interestingly enough, a week before the BCODP/PSI launch of the Direct Payment
research findings, called "Cashing in on Independence", the Minister
of Health announced that it was the Government's intention to bring about
Direct Payments legislation in the next parliamentary year. We were ecstatic!
After five years of campaigning vigorously, we had achieved the beginning
of our main goal. We were more than pleased that the research and the lobbying
had the impact that we were hoping for. This announcement led to an intense
flurry of activity around the whole issue of Direct Payments and a proliferation
of seminars and conferences were organised by both policy makers and the
Independent Living movement. Also, numerous research projects on Independent
Living issues were instigated. At one of these conferences organised by
the SSI, the Social Services Inspectorate, a number of Independent Living
advocates met up with some key civil servants, who had been delegated the
task by the Department of Health to research and work on implementing the
Direct Payments change. From now on they were crucial in our deliberations
Technical Advisory Group (TAG)
The Government then set up the Technical Advisory Group to work on the research
and implementation of the Direct Payments legislation. This group then invited
participants from a number of professional, statutory, voluntary and disability
organisations. Because of its expertise in this area, BCODP was one of three
disability organisations invited onto the group. Jane Campbell, the representative
from BCODP, was the only Personal Assistance user who had been running her
own Direct Payment scheme that was on the TAG. The TAG group started in
June 1995 and since then has been looking at the key issues and drawing
up guidance for the appropriate civil servants and Government Ministers.
It was later partially responsible for drawing up the Government's consultation
document on Direct Payments which was distributed out for comment.
Since the Direct Payments Bill was announced in the Queen's speech (which
is the Government's annual statement of what they intend to legislate for
the next parliamentary year) last November, there has been a tremendous
amount of activity on the political scene. BCODP has been extremely busy
lobbying and briefing the Members of Parliament with a tremendous amount
of success. The Bill has progressed very well up until now and only has
its final stage to go through. We hope that this Bill will be passed before
the end of July which is the end of the parliamentary year. As Frances has
been one of our two main persons doing this work she will now outline some
of the main tactics and outcomes of this time.
The Lobby for Direct Payments
The Government Bill for direct payments is very short, what they call "enabling
legislation". All the details are to be put into regulations, which
are published after the Bill becomes an Act. The Government has published
a consultation document setting out the sort of regulation they have in
The most important things to be decided from our point of view were:
The Government planned to restrict eligibility to people with a physical
disability under the age of 65. This was clearly discriminatory and we had
to oppose it.
The Government does not propose to set cash limits for how much can be paid.
They propose that authorities must give people enough to meet their legal
obligations, such as paying National Insurance. However, this is not a very
big concession. Workers in the UK have very few employment rights until
they have been with an employer for two years.
The direct payments Bill is a "permissive", not "mandatory"
legislation. That means that it allows authorities to make payments but
it does not compel them to. Each local authority can make its own policy
to this. We wanted the Government to set national rules.
Other items we were concerned about were:
support services, on which the Government are not making any directives
who may be employed as a personal assistant - the Government want to prevent
people from employing close relatives.
The Progress of the Campaign
Our campaign has been on two levels. We have worked with Parliament, allying
ourselves with paid lobby workers from other organisations. And we have
worked through our networks, getting our members to approach their Members
of Parliament. Working with paid lobbyists has been a new venture for us.
In the UK there are a large number of charitable bodies concerned with disability..
Although they do nothing to promote Independent Living, they all wanted
to comment on the Bill and to influence the Government. So we had to educate
them about Independent Living at the same time as trying to influence Members
of Parliament and Members of the House of Lords.
Our biggest victory so far has been to convince the Government that people
with learning difficulties (intellectual impairments) should be included
in the scope of the Bill. The organisation controlled by people with learning
difficulties, People First, did some very effective lobbying on this subject.
And then, during the "Committee Stage" of the Bill (where a small
number of MPs go through it in detail) the Government were defeated on key
vote over eligibility, meaning that all disabled adults, whatever age or
impairment, would be covered by the Bill.
We have not managed to shift the Government on the same areas. They will
not make the Bill mandatory. So local authorities can choose whether or
not to have Direct Payments.
On other areas, such as employment of relatives, we are still in discussion.
Throughout the campaign we have tried to keep our supporters fully informed
so that they can contact MPs and Lords to press our case for change. We
have had to write lengthy briefings to assist Opposition MPs. Our research
was helpful here, as it gave us good background material, but having regular
contact with Personal Assistance Users was vital too, to get new quotes
and up-to-date facts.
Throughout the campaign we have had to respond not just to Government but
to social work and charity professionals who were worried about direct payments.
Some of them support the Government approach of making Direct Payments available
to a small elite group. We had to argue the case for full eligibility over
and over. We have had to explain the principles of Independent Living over
and over. We have been helped by having very clear principles and a united
Disabled Persons Movement.
We are now waiting to find out what further changes the Government proposes
to make to the Bill before its final stage in the House of Commons. We expect
the Bill to come into effect next April. That will be the end of stage one
of our campaign, to make direct payments legal. Stage two will be to make
sure that all local authorities use their power, and bring in Direct Payments
in their area.
John Evans and Frances Hasler. June 1996
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