Memorandum by MENCAP
RELATIONSHIP BETWEEN HEALTH AND SOCIAL SERVICES
1. "Learning disability" (formerly
known as mental handicap) is a term used to describe impairment
of intellectual functioning which is identified at birth or during
a child's early years, and continues throughout life. It is commonly
assumed that there are in the United Kingdom well over one million
people with some degree of learning disability, and over 200,000
people with severe learning disability.
2. Like other people, people with learning
disabilities may have or acquire additional physical, sensory
or mental health disability. The more severe the degree of learning
disability, the greater the likelihood of additional disability.
Those born with the most severe and multiple disabilities are
likely to have a shortened life-span. However, expectation of
life for people with learning disabilities has increased substantially,
and later years bring additional disabilitiesoften with
earlier onset than in the general population.
3. Most people with learning disabilities
live in the community. This has always been the case. Most
of these live with their families. People with learning disabilities
have educational, income, health, housing, employment, leisure,
social, and social support needs, like the rest of the population.
If one single social policy category label has to be attached
to learning disability, that label is not Social or Health, it
4. John spent much of his life in a
series of specialist institutionsinstitutions which had
themselves over their long history been at different times mainly
educational, or mainly social care or mainly health. He now lives
in his own flat (housing), goes to a local college (education),
receives income support (social security), helps older people
at a local centre (work), uses his local GP and local hospital
(health), attends a local club (voluntary sector), travels widely
(public transport), has a network of friends (social), and has
a support worker (social care) as an ally in securing access to
local opportunities and to generic or specialist services.
1.1 The Royal Society for Mentally Handicapped
Children and Adults (Mencap) is the largest charity in the UK
working with and for people with learning disabilities and their
families. We work within England, Wales and Northern Ireland,
and in close partnership with our Scottish counterpart Enable.
Nationally and locally, and in partnership with others, we campaign
for civil rights and for improved services and opportunities for
people with learning disabilities; seek to raise awareness and
inform attitudes; and provide a range of services and opportunities.
People with learning disabilities are having an increasing say
in our affairs, alongide parents and professionals.
1.2 Mencap is committed to the principle
of community carethat is to the principle that people with
learning disabilities should enjoy the opportunities from which
they can benefit and receive the support they need in their own
homes and in their own local communities. For some, this will
mean home ownership, employment, marriage and raising a family,
and making use exclusively of generic opportunities and generic
services. For others, with more severe and complex disabilities,
it will mean supported access to generic opportunities and services,
and also an important role for specialist servicesincluding
specialist staff working into the community and into generic opportunities
and services. However, degree of disability does not imply segregated
provision as well as more intensive support. For example, people
with more severe disabilities have also become home owners, and
gained paid employment. Helen has profound and multiple disabilities,
but has been a valued member of her local church and her local
community for 25 years.
1.3 Historically, and currently, the main
barriers to achievement have not been disability, but a shortfall
in skills, resources, structures and imagination and consistency
to support the achievements of people with learning disabilities.
The disabilities are real, but so is the potential . . . and neither
the social model, which sees people as clients, nor the medical
model, which sees them as patients, has done justice to that potential.
(Individual doctors, nurses, social workers, and teachers, have,
however, seen the potential in individuals and worked hard to
bring it to fruition.)
2.1 At its peak, the institutional model
of care (hospitals from 1948 but colonies or something else before
that) catered for 65,000 peoplestill a minority, though
a substantial minority of the total population with learning disabilities.
That model was one which sought to provide total support under
a unitary authority: education, employment, health care, leisure,
social care, income, and a social life. Hence the description
"The total institution". It was seen initially as beneficial,
and directed towards asylum, sanctuary, etca place of refuge
from a hostile world. Good people worked, and good things happened,
in these settings, but the "scandal" reports of the
1960's confirmed that protection had shifted to control, and that
with control had come abuse . . . and these were not safe places.
Most important, they were not places in which individuals were
treated as individuals.
2.2 John stayed in an institution where
false teeth as well as underwear and top clothes were allocated
2.3 The single system structure of the institutions
did not guarantee adequate or appropriate education, social support,
or evenstrangely in a health care setting and with a "captive"
patient populationhealth care. Today, the hospitalised
population is only about 3,000 people, and over 60,000 people
live, under various auspices and with diverse funding, in supported
accommodation of different kinds in the community. The majority
of (some 160,000) adults and nearly all (some 30,000) children
with severe learning disabilities live with their families. The
experience of the remainder of the 1.2 million people with some
degree of learning disability probably lies between that of people
with severe learning disability and that of the general population.
A single authority model would obviously work differently where
those for whom it caters are living in their own homes or with
their families rather than in large institutions, but we do not
believe that this is the right model for community care. It would
at best be a bringing together of health and social careleaving
out the crucial elements of education, employment, income and
leisure. Moreover, like a Ministry of Co-ordination in Whitehall,
it would have to work through what would remain distinct entities.
The Northern Ireland combined health and social services system
struggles with the problems of communication, professional identity,
professional competence, legislative requirements, with which
we struggle elsewhere in the UK.
2.4 Moreover, the social support and health
care needs of people with learning disabilities are generally
not specialist needs: they are needs for access to the same services
that other people need and use. Hence the problem to be tackled
is that of creating a sensible partnership between generic and
specialist services: specialist services where these are needed,
competence for dealing with special needs in generic services,
and specialist support into generic services where this is required.
2.5 A unitary Learning Disability Health
and Social Care Authority would be what people made of it, and
law and finance and external monitoring allowed them to make of
it. However, the probability is that it would not of itself break
down internal divisions; it would create new dividing lines between
itself and other agencies; and it would deprive people with learning
disabilities of the healthy pressures for improvement that come
from the shared experience of people with and without disabilities.
John would see it as largely irrelevant to most of his needs.
Helen is much more dependent on specialist services, but her home
may well become a Housing Association property, and her main resources
outside her home are ordinary community resources.
3.1 Joint Commissioning, for example in
Oxford and now being developed in Bromley, is a growing and much
less radical approach to working together. It is concerned with
those needs which are best addressed by specialist services or
specialist support, and it requires a sharing of: identifying
needs and wishes, planning to meet those needs and wishes, allocating
resources accordingly, ensuring implementation of those plans,
and monitoring outcomes. The move to joint commissioning has been
made more difficult by different financial and planning timescales,
different structures and accountabilities, different legal identities
and obligations, but above all by the common problems of unpredictable
and often reducing finance. Committee members will be familiar
from constituency experience of the adverse implications for planning
of both local authority funding settlements, and such changes
in Health Authority funding as the recovery of "old long-stay
3.2 Joint commissioning has been an important
step forward from Joint finance. The latter has facilitated joint
working, but through use of marginal rather than core financing.
Moreover, and perhaps because this is money at the margins, joint
finance expenditure has sometimes been rather tangential to the
main service programmes, lacking in structured and consistent
planning, and not always handled purposefully within a genuine
joint framework of co-operation between Health, Social Services
and the Voluntary Sector.
3.3 If, as we would argue, it is by pooling
resources and activity, rather than by take-over or re-structuring,
that co-operation within specialist services and between them
and generic services is to be secured, the issue arises of how
this is to be maintained and developed in the context of the Government's
move from existing and proposed structures to Primary and Community
3.4 We are at a transitional point where
there is a lack of clarity both about concepts and structures.
The purchaser/provider split has not been formally abandoned though
it is being changed, and the Health Authorities are seen as having
a framework role to replace their purchasing/commissioning role;
but full-blown Primary and Community Trusts will combine commissioning/purchasing
and providing functions, and might be thought to leave rather
a marginal role for Health Authorities. There is an emphasis on
local identity, but it is not necessarily the case that a population
base of about 100,000 will reflect either a natural local community,
or an historic service configuration, or a natural organisation
level for combined primary and community services. There will
be some restoration of local authority involvement in the new
structures, but by a representative presence rather than by required
partnership; and the extent to which Groups/Trusts will purchase
or provide social care is unclear.
3.5 The White Paper guidance implies that
Learning Disability and Mental Health will not be part of the
new Primary and Community Groups/Trusts. The small and shrinking
number of Learning Disability Trusts, and the discussions about
catchment area and function for those which remain, suggest that
local specialist Learning Disability Trusts will rarely be viable.
The implication is that Mental Health and Learning Disability
will be housed together. That is already a not-uncommon model,
and it may sometimes be appropriate. However, our instinct is
that the substantial differences between the two sets of services,
together with the common and unfortunate confusion between the
two conditions, argue against a norm of hosting learning disability
with mental illness and separating it out from primary and community
3.6 We favour a common standard for quality
services rather than a standard service model, but we can envisage
joint commissioning between a Primary and Community Care Trust/Health
Authority and a Local Authority or Authorities as being a viable
option. This implies a common set of principles, a common set
of outcomes for the individual by which to measure standards,
and common ground in involving people with learning disabilities
and their families in decision-making and in monitoring.
4.1 If, as we have argued, the structures
through which specialist services and specialist support are delivered
constitute only a small part of the challenge to provide people
with learning disabilities with adequate opportunities and support,
it is also true they are only one aspect of the specialist services
4.2 We see a number of elements contributing
to the successful evolution of specialist services and specialist
(a) A Central Government strategy for learning
disability services drawn up in consultation with the voluntary
sector, the research centres, and the professional and other groupingsusing
a focus group such as that created by the Learning Disability
Coalition, and spanning both the range of needs and the range
of Government policy initiatives.
(b) Realistic funding which takes account
of the demography of learning disability (more people with greater
needs) through local needs assessments and local disability data
bases, innovations in service content, and impact analysis of
major social policy changes. (Preliminary work has suggested a
substantial shortfall in existing social services funding.)
(c) Recognition of the realities of service
diversityfor example variations in the extent to which
the NHS is involved in residential provision, and respect for
that diversity provided that it is grounded in quality.
(d) Respect for professional identity, and
its development where, as in the case of social work, it lacks
a powerful framework; but training (including wherever possible
joint training) at both pre-qualification and post-qualification
levels, and for non-professional staff, which enables providers
to support a competence-based service. (Competence must be defined
not just by skills but by knowledge and understanding, since so
much depends on relationships and not just techniques. It must
also be informed by the expertise of people with learning disabilities
and informal carers.)
(e) Charging policies which start from the
principle, common across the health and social care dividing line,
that people whose resources are predominantly social security
benefits should be charged for essential services only to the
extent that social security benefits are specifically provided
in order to meet those charges. Outside this, services should
be funded from taxationthrough which all contribute according
to their means.
(f) Priorities which are broad enough to
include both those whose severity and complexity of needs are
such that they tend to secure some, though not always appropriate
or adequate, provision; and those who are less disabled but who
can not justly be left to their families to support indefinitely
. . . or wisely left until they too reach crisis point.
4.3. The positive history of learning disability
services is that of individuals with vision and commitment and
ability (including people with learning disabilities themselves,
parents and professionals of many kinds) who have moved things
forward despite the current systems and current attitudes. Our
hope is that, as we stand at the threshold of further major change
in all areas of social policy, we will both allow scope for those
pioneers to do what systems themselves can't do; and allow the
possibility of their innovations becoming normative. Their philosophy,
which we embrace, is that people with learning disabilities have
the capacity to do greater (and more ordinary) things than we
give them credit for, if we are ready to learn with them . . .
and refuse to lock ourselves into the usually mistaken belief
that this week's "solution" is the final solution.
4.4. Direct payments and brokerage, and
the separation of housing and housing support from care, together
with personal futures planning which is about support and opportunities
and not about service systems, are beginning to show how people
can be treated as individuals without the group rigidities of
either the old institutions or `"traditional"' community
care. The largest single dedicated professional group, learning
disability nurses, has played an important part in this, though
not without difficulties in securing recognition for professional
practice and identity outside a health setting. Community learning
disability teams have played a valuable support role, though under
threat because they fit uneasily both the purchaser/provider split
and the Health/Social Services divide.
4.5. We are beginning to escape from the
"logic" that if you live in a health home you must use
a health day service (and vice versa); or the "logic"
that health care can not be delivered in a non-health setting.
We are still suffering from the total illogicality that while
family carers are expected to cope with almost all health care
needs, children are missing out on schooling, and adults are missing
out on day service opportunities, because nobody is prepared to
handle medicationin particular invasive procedures such
as medication per rectum where there is a prolonged epileptic
4.6. For both John and Helen, it is not
the major upheaval of a further re-organisation that is needed,
but a shared vision across the whole range of services and opportunities,
based on an individual assessment of needs and wishes, and, for
specialist services and for specialist support in accessing mainstream
services and opportunities, a process of joint commissioning and
joint monitoring to joint outcomes agreed with the person with
learning disability and/or their advocate.