Small step forward

In a few months, I am retiring from Mencap after 17 years,
having worked with people with learning difficulties for more than
38 years. It is then inevitable that my review of the first annual
report of the Learning Disability Task Force will look wider than
the report on its own.

Has the inequality and exclusion I saw when I started in 1964 been
overcome, or at least addressed, so that we can see the solution in
sight?

The publication of the Valuing People white paper was a
world-leading milestone in government attitudes towards the
provision of services for people with learning difficulties. The
revolutionary concept – that we should be asking people what they
want and designing services to fulfil those wishes instead of
providing those services and finding ways to fit people into them –
is, to say the least, challenging. It means a major change in
thinking for all of us. Everyone who works in this sector has to be
far more flexible and prepared to make the aspirations of people
with learning difficulties a higher priority than their own
ambitions or job security. My postbag from colleagues all over the
world made me proud to have been involved with planning the Valuing
People strategy and optimistic that I could see how my lifetime’s
drive towards real rights – independence, choice and inclusion –
would be achieved.

So, has my optimism been well placed?

The Annual Report on Valuing People by the Learning
Disability Task Force², published this week, highlights
the fact that a lot has been done and there are areas where we can
be satisfied. Valuing People has made many people think about the
work they do and the way they do it. We have made great progress in
the inclusion of people with learning difficulties in the planning
and implementation processes at all levels. This is certainly true
at task force level, although the picture is less good around the
country in many of the local learning disability partnership
boards.

But the real meat of the annual report lies in the things that the
task force is planning to look at this year, and particularly the
things it wants the government to do.

The question of where learning difficulties fit into priorities for
government departments, health authorities and local authorities
has been raised repeatedly. The budget is frustratingly unclear.
Changes in funding arrangements prevent an overall picture being
painted and anecdotal evidence of shortfalls and cuts contrasts
with the Department of Health’s utterances. I am afraid that this
picture has been all too familiar during the past 38 years.

Let’s be clear: one of the weaknesses of Valuing People was that
little extra money was provided to implement it. Without adequate
funding many of the high ideals will continue to be frustrated. A
central plank of Valuing People is “person-centred planning”, which
was intended to give people real choices in their lives. But choice
and change cost money.

The annual report highlights the growing demand and need for basic
services, the need for learning difficulties to be seen as a
priority particularly in local government and the NHS, the need for
real and effective advocacy and the fact that people with learning
difficulties are still excluded from many mainstream
programmes.

Housing is one area where there is not only a need for new and
imaginative thinking but also simple growth in the services
available. I hear regularly from older parents who still have
ageing sons and daughters with learning difficulties living with
them but are desperate to know what will happen after they have
gone. In some cases the roles reverse and the people with learning
difficulties become the carers of older parents. The needs of these
older parents are highlighted in Valuing People but there is little
evidence of plans to help. In Mencap’s survey of 150 local
authorities last year, we found that only half of the local
authorities knew the number of people living with parents aged 70
or over. Worse, only one in four local authorities have planned
alternative housing for them.

It is vital that in the NHS people with learning difficulties have
a higher priority. Through Mencap’s advisory services, including
the helpline, we hear about the problems that people with learning
difficulties have in accessing mainstream health services. We are
not talking about specialised treatment but simple things like
dentistry and GP support. The problem is that people with learning
difficulties are low on the priority list and the targets do not
take account of their special needs. The low priority leads to low
expectation, and the exclusion of learning difficulties from
training programmes for non-specialised professions. Other areas
where similar problems arise and are included in the annual report
are employment and leisure.

Equally, it is clear that for some specific groups of people things
have not improved a great deal over the past 38 years. Top of this
list are those people with the most severe difficulties and their
families who are still left struggling on their own with little
help, let alone choice, from service providers. The same applies to
families from ethnic minorities who do not choose the support
systems that are available because they do not meet their needs.
Person-centred planning is the key to knowing what is wanted, yet
the development of this is slow at best.

Local planning is the responsibility of partnership boards.
Information to the task force would suggest that their development
is patchy. Real inclusion of people with learning difficulties
appears to be the exception rather than the rule and many
partnership boards seem to be intent on keeping practices the same
rather than changing. Perhaps the concept of putting the
aspirations of people with learning difficulties at the centre of
the planning and implementation process is just too challenging. On
the other hand, there is encouragement as some areas have grasped
the nettle, confronted the difficult issues and are beginning to
make it work.

Valuing People is clear that the last of the long-stay hospitals
that were at the centre of services when I started in 1964 would be
closed by 2004. I would hate to think that the task force’s worries
that this target may not be met are true. But, again, I am afraid
that without the right priorities and money fine objectives will
flounder.

Overall, the start of implementing Valuing People has produced some
encouraging signs but there remain serious doubts and worries. The
prime concern is the way that learning difficulties have fallen
down the priority list of government, the NHS and local
authorities.

During the 1960s it was a series of crises and scandals in
long-stay hospitals that led to the 1970 learning disability white
paper and action. I hope we don’t have to wait for similar
circumstances to force the government to act and realise that
priorities and funding need to change now.

Fred Heddell is chief executive of Mencap and a member of the
Learning Disability Task Force.

References

¹ Department of Health,
Valuing People: A New Strategy for Learning Disability for the
21st Century, The Stationery Office, March 2001.

² Learning Disability Task
Force, Annual Report on Valuing People, National Forum for
People with Learning Disabilities, January 2003.

Websites

Valuing People website at
www.doh.gov.uk/learningdisabilities/access/