People with learning difficulties in from the cold

The learning difficulties white paper for England has seen
charities united in their praise for its aims and vision. But
concerns exist about the support provided to make the vision real,
writes Lauren Revans.

People with learning difficulties were invited in from the
political wilderness last week with the publication of a white
paper designed specifically for them – the first such paper for 30
years.

“People with learning difficulties have for too long had their
needs ignored,” health secretary Alan Milburn said at the launch.
“For 30 years forgotten generations of people with learning
difficulties have lost out. That must change.”

Valuing People: A New Strategy for Learning Disability for
the 21st Century¹ has been warmly received by all,
and hailed by those who participated in its development as a true
reflection of the concerns and issues raised.

Based on principles of rights, independence, choice and
inclusion, the white paper sets out a major programme designed to
improve life chances for people with learning difficulties. The
government also hopes that, alongside the new Disability Rights
Commission (DRC), the paper will tackle long-standing issues of
discrimination, inequality, and social exclusion.

To encourage action to help the estimated 1.4 million people
with learning difficulties in England, the government will set up
an implementation team of regional development workers by autumn,
and is backing its 11 overarching objectives (see below) with more
specific targets.

These range from the closure of the remaining long-stay
hospitals by April 2004 and the modernisation of day centres by
2006, to the establishment of a learning difficulty task force by
this summer and learning difficulty partnership boards in every
local authority by October 2001.

The white paper also proposes 10 performance indicators against
which social services departments’ progress can be measured. These
will target factors such as the total of direct payments made, how
many people with learning difficulties are in employment, and the
number of staff working in learning difficulties services achieving
NVQ level 2.

Welcoming the white paper, James Churchill, learning
disabilities advisory group member and chief executive of the
Association for Residential Care, says: “The good thing about this
white paper is that although it has its head in the clouds, its
feet are firmly on the ground. If you know you are going to be
checked on, then you jolly well do it.”

To support the new strategy, the government has promised to
create a new learning difficulty development fund of up to £50
million per annum, of which £30 million will be revenue
funding and £20 million will be capital. This will be
introduced in April 2002 and repeated in 2003 – with Hutton hinting
that funding could continue through to 2006.

The revenue element will come by ring-fencing old long-stay
health funding, which currently is lost in the general health
budget when people die. Priorities for the use of revenue funding
include modernising day centres, re-accommodating the 1,500 people
still living in long-stay hospitals, and developing supported
living approaches for people with learning difficulties living with
older carers.

Priorities for the use of capital funding include developing
specialist local services for people with severe challenging
behaviour, and developing integrated facilities for children with
severe difficulties and complex needs.

However, the Local Government Association and others have
criticised the government for failing to identify any sustainable
funding to support these changes. They also disagree with Hutton’s
implication that the “very real significant increase” in spending
on personal social services budgets for the next three years will
suffice.

“Choice costs money and choice is going to mean much more
expensive services,” argues LGA policy officer Noel Towe. “It is
all very well saying that local authorities are getting an extra
3.5 per cent, but the reality is that they are already overspent by
that amount.”

A £2.3 million implementation fund will be available from
April for the next three years to provide central support for the
new strategy, including the development and expansion of advocacy
services. A national learning difficulty information centre and
helpline will be established in partnership with learning
difficulties charity Mencap.

This focus on advocacy services and a person-centred approach
have been among the white paper’s biggest plus points, although
again levels of funding have been called into question.

Director of strategy and policy at the Disability Rights
Commission, Paul Gemmill, welcomed the recognition of the rights of
people with learning difficulties to make their own choices. But he
called for more than the £1.3 million per year available from
the implementation fund for the development of advocacy
services.

“What’s going to be important is to have sufficient funding
around to make it real,” Gemmill said. “The money on offer is a
great start. But with additional funding beyond that a great deal
more will be achieved.”

The principle that people with learning difficulties should have
equal access to ordinary health, education, employment, housing,
and leisure services is a central theme of the new strategy. To
achieve this the government intends to bring the issues to the
centre of the political agenda.

Joan Maughan is chief executive of the not-for-profit learning
difficulties agency, National Development Team. She said: “The
paper has got a sense of corporate responsibility for people’s
rights. It clearly makes references to agencies such as housing,
leisure services, and so on really playing a part.

“That fits very well with other legislation that’s around, and
begins to put learning difficulties services in the proper place
and people with learning difficulties in the citizenship
agenda.”

Inter-agency working and joint partnerships are pivotal to
achieving this goal. While the Department of Health promises to
work closely with other government departments, local agencies will
be required to demonstrate joint working between themselves and,
crucially, with people with learning difficulties and their
carers.

Jeremy Fordham, of Fulham in London, whose three-year-old
daughter has autism, has been involved in setting up local parent
action groups to fight for better services. Welcoming the
opportunity to work with all the relevant agencies on partnership
boards, Fordham said: “We wouldn’t be starting groups of that
nature if we didn’t feel that there is more need for voices of
parents and disabled people to be heard.”

Learning difficulty partnership boards (LDPBs) will operate
within the framework provided by local strategic partnerships
(LSPs) – outlined in the government’s neighbourhood renewal
strategy published in January. Leadership of the LDPBs is likely to
rest with local authorities and responsibilities will include
developing and implementing learning difficulty joint investment
plans and overseeing services planning and commissioning. They will
also ensure that people are not denied their right to services
because of a lack of competence or capacity of service
providers.

Failings of partnership arrangements will be taken into account
in determining the allocation of the new development fund. Where
effective partnerships are not established, the government will
also consider using its intervention powers set out in the Health
and Social Care Bill2 to require the development of a care
trust.

LDPBs will also need to draw up a workforce and training plan.
It is estimated that three-quarters of staff working with people
with learning difficulties are unqualified. A learning difficulty
awards framework, based on two new vocational qualifications, will
be introduced in April to provide a recognised route to
qualification and career progression for care workers in the field.
The government wants all entrants to the field to be registered for
qualification by April 2002. Fourth and fifth levels of the
framework are being developed too.

Overall then, the government’s new strategy appears to have
scored full marks in the categories of process and outcome. The key
to success now is how it is implemented.

As James Bartlett, parent carer and chairperson of Mencap’s
south Wiltshire branch, says: “What I hope the white paper will do
is give key officers the authority, the obligation and the means to
actually put things into practice.”

¹ DoH, Valuing People: A New Strategy for
Learning Disability for the 21st Century, Stationery Office,
2001

Available from Stationery Office website at www.official-documents.
co.uk

² DoH, Health and Social Care Bill,
The Stationery Office, 2000.

Aims of the white paper

The 11 key objectives of the white paper:

• To maximise life opportunities for children with learning
  difficulties.
• To ensure continuity of care and support for young people with
  learning difficulties and their families during the transition to
  adult life.
• To enable people with learning difficulties to have as much
  choice and control over their lives as possible through advocacy
  and a person-centred approach to planning the services they
  need.
• To increase the help and support carers receive from all local
  agencies.
• To enable people with learning difficulties to access a health
  service designed around their individual needs.
• To enable people with learning difficulties and their families
  to have a greater choice and control over where and how they
  live.
• To enable people with learning difficulties to lead full lives
  in their communities and develop friendships.
• To enable more people with learning difficulties to participate
  in all forms of employment.
• To ensure that all agencies commission and provide high
  quality, evidence-based and continuously improving services which
  promote both good outcomes and best value.
• To ensure that social and health care staff working with people
  with learning difficulties are appropriately skilled, trained and
  qualified, and to promote a better understanding of the needs of
  people with learning difficulties among the wider workforce.
• To promote holistic services for people with learning
  difficulties through effective partnership working.