Select Committee on Health Minutes of Evidence

Memorandum by MENCAP



  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 disabilities—often 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 is Education.

  4.   John spent much of his life in a series of specialist institutions—institutions 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 care—that 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 services—including 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 people—still 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, etc—a 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 at random.

  2.3  The single system structure of the institutions did not guarantee adequate or appropriate education, social support, or even—strangely in a health care setting and with a "captive" patient population—health 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 care—leaving 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 allocations".

  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 Groups/Trusts.

  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 care.

  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 themselves.

  4.2  We see a number of elements contributing to the successful evolution of specialist services and specialist support:

    (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 groupings—using 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 diversity—for 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 taxation—through 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 medication—in particular invasive procedures such as medication per rectum where there is a prolonged epileptic fit.

  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.

April 1998

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