Services for People with Learning Disabilities

Nigel Malin

• Publisher: Routledge
• Year: 2002
• Print ISBN: 9780415099387
• eBook ISBN: 9781134857746
• Topic: Medicine
• Subtopic: Health Care Delivery

Services for People with Learning Disabilities provides a broad review of available services for people with learning disabilities. It describes the present network of services and explains the NHS and Community Care Act (1990) in terminoloy accessible to health care professionals and others engaged in this area. It looks in detail at the concepts underpinning new legislation, including care-management and assessment, quality and inspection, and inter-agency planning, and it supplies up-to-date information on current topics such as advocacy and empowerment, and recreation and leisure. An invaluable resource for all practitioners in health and community care, Services for People with Learning Disabilities will also give professionals and carers a much greater understanding of the changes and improvements that are still needed.

Part I
The service context

1 Classification of people with learning disabilities

David Race

With the first line written on the subject of learning disabilities comes the first problem. For unlike other physiological or biochemical disorders, such as damaged limbs, for which there is general agreement on definitions used for classification, the classification of mental disorder, and specifically that involving people with learning disabilities, has been subject to wide-ranging disagreements among those connected with it. These disagreements, in fact, go beyond classification, and on to causation, prognosis, and the most appropriate method of response by human services. Even the use of the term ‘learning disabilities’ immediately places the authors in a certain sector of opinion; the use of alternatives such as mental subnormality, mental retardation, special needs, developmental disability, mental handicap, or even learning difficulty, would have located them elsewhere. So too, the writing of a book on services, rather than about people with learning disabilities, is seen by some as a political statement, an acceptance of the status quo. However, as Ryan and Thomas (1987) put it: ‘The changing definitions of difference constitute the history of mentally handicapped people’ and so in an attempt to understand that history it is necessary to trace the definitions and classifications made by both individuals and governments in trying to describe the sort of person that this book defines as having learning disabilities.

The most common confusion still existing in the public mind is the lack of distinction between the two states commonly referred to as ‘mental illness’ and ‘mental handicap’. Matthews (1954) quotes a statute of 1325 (De Praerogativa Regis) which dealt differently with the lands of an ‘idiot’ and a ‘lunatic’. ‘Idiots’ (i.e. natural fools) were to have their lands protected, their necessities provided for, and their lands passed to the proper heirs on their death. ‘Lunatics’ (i.e. persons of unsound mind) had their lands protected so that they might be restored to them on their recovery. The difference between the two was thus seen to be one of permanence. The ‘idiot’ was suffering from an incurable congenital condition, whereas the ‘lunatic’ was suffering a temporary loss of reason. A more philosophical distinction was made by Locke, when he concluded that,

In short herein seems to be the difference between Idiots and Madmen, that Madmen put wrong ideas together, and so make wrong propositions, but argue and reason right from them; but Idiots make very few or no propositions and reason scarce at all.

(Locke, 1689)

In other words the essence of the ‘idiot’ was lack of development or defect of mind, whereas the ‘madman’ was suffering from a temporary imbalance which still enabled some effective thinking processes to occur.

Tredgold (1952) used an economic analogy, typically negative and chillingly prescient of certain current attitudes. He compared the person who is ‘mentally ill’ with someone who is temporarily bankrupt and those who are ‘mentally defective’ with someone who has never possessed a bank account or any money to put in it.

These distinctions seem clear-cut, and there is no doubt that the more extreme cases of learning disability were, and are, easily recognised as such when compared to people with mental health problems. The provision of the fourteenth-century statute covered only the landed few, however, and at the village level no provision, and therefore no classification, was needed for people with learning disabilities. The ‘village idiot’ was accepted by the community for what he or she was and dealt with at the level appropriate to the times, with all the local variation this entailed. Later, however, along with the poor, the aged and other people unable to find paid employment, people with learning disabilities, other than those of wealthy parents, began to be segregated from their community and put into Poor Law workhouses. These institutions, particularly after the Poor Law Amendment Act of 1834, were specifically designed to act as a deterrent to the ‘lazy and shiftless’ who were unwilling or unable, for one reason or another, to find work. Since ‘work’ itself was undergoing its most fundamental change of character at the time, numbers in this group were significant. They included, of course, people with learning disabilities and it was, in many ways, the Industrial Revolution and the workhouse which began the isolation of people with learning disabilities from the public, and from public understanding.

Further details of the development of provision for people with learning disabilities will be given later, but returning to the development of classification, most of the next steps were legal ones. The Lunatic Asylums Act (1853) instructed the justices of every county and borough to provide asylums for the ‘pauper lunatics thereof and stated that a ‘lunatic’ meant every person of unsound mind ‘and every person being an idiot’. This contrasts most confusingly with the working of the Idiots Act (1886) which stated that ‘“Idiots” or “Imbeciles” do not include lunatics’ and that ‘“Lunatic” does not mean or include idiot or imbecile’. Still further confusion was brought about by the Lunacy Act (1890) which defined a ‘lunatic’ as ‘an idiot or person of unsound mind’. In addition to this lack of distinction between what were, in effect, the most severe and obvious cases of people with learning disabilities and mental health problems, the group known as the ‘feebleminded’ then entered the picture. Hitherto this group, now considered to have relatively few learning disabilities, had not been thought to be suffering from any defect but, in the main, to be simply lazy or wicked.

By the last decade of the nineteenth century, however, the concept of feeble-mindedness had developed to such an extent that charitable institutions existed for the ‘care and education of the feeble-minded’ and in the 1901 census the category of ‘feeble-mindedness’ was included. This resulted in the reporting of some 13,000 cases.

With the continuing definitional problem, it is scarcely surprising that a Royal Commission, set up in 1904 to make recommendations concerning the care of the ‘feeble-minded’, requested an extension to its remit to cover all forms of mental disorder, including mental illness. Its report, published in 1908, recommended a general term to cover all these forms of disorder, called ‘mental defect’. The terminological confusion was then compounded when this overall category was used synonymously with that applied to a more restricted group, excluding those with mental health problems. The ‘mentally deficient’ were the class of person classified and dealt with under the Mental Deficiency Act of 1913. This Act provided the first supposedly exact definition of the various grades of ‘mental deficiency’, which was restricted to that arising ‘from birth or from an early age’, and its categories were to remain the legal terminology for nearly half a century. It classified ‘defectives’ under four headings.

1. Idiots—these were persons who were ‘so deeply defective in mind from birth or from an early age as to be unable to guard themselves against common physical dangers’.
2. Imbeciles—these were persons who, whilst not as defective as ‘idiots’ were still incapable of ‘managing their own affairs’.
3. Feeble-minded persons—these were persons who were not as ‘defective’ as ‘imbeciles’ but required ‘care, supervision and control for their own protection or for the protection of others’.
4. Moral defectives—these were persons who ‘from an early age display some permanent mental defect coupled with strong vicious or criminal propensities on which punishment has had little or no effect’.

The language of these classifications is a clear indication of how much more of a social and administrative issue, rather than a clinical one, is the situation of people with learning disabilities. All definitions are couched in terms which describe the results of ‘defect’, rather than any scientific definition of what ‘defect’ actually is, and all contain descriptive statements which are totally bound up with the contemporary standards and understandings of a particular society. Thus, for example, ‘common dangers’ in an industrialised western society are very different, then as now, from those found in the remoter parts of the Third World. Even between town and country within a particular society the skills necessary to ‘manage one’s own affairs’ are rather different. The Act was, of course, a product of its time and in particular of the powerful pressures on the government to avoid a ‘national degeneracy’ resulting from the ‘propagation of the unfit’. These fears were given voice by, amongst others, the Eugenics Society. Their prime case was, in Tredgold’s words,

that as soon as a nation reaches that stage of civilisation in which medical knowledge and humanitarian sentiment operate to prolong the existence of the unfit, then it becomes imperative upon that nation to devise such social laws as will ensure that those unfit do not propagate their kind.

(Tredgold, 1909)

The basic impetus was therefore towards segregation, which the Act put into operation, and which will be considered further in Chapter 4. The classification of ‘mental defectives’, with all its inherent subjectiveness, therefore remained as a potent force.

Although subjective, the definitions do lend themselves to a judgement of social capacity which can be related to the norms of the day, and demand at least individual attention. In contrast, contemporary work elsewhere had just begun to develop the means of applying a ‘scientific’ classification to the development of the mind which, it was thought, placed individuals in their rightful position in the distribution of intellectual abilities, from where they could never move and by which society could judge their ability. Binet and Simon’s series of tests, first published in 1908, and revised in 1911, with their underlying idea of ‘mental age’ related to chronological age to provide an ‘Intelligence Quotient’ were quickly added to the prevailing opinions of inherited defect to provide the idea of mental ability as a basic physiological function, unchanging over time, which could be measured scientifically by standardised methods. The implication was therefore that your ‘intelligence’ was inherited, and no amount of learning or changes in social conditions would affect your position in the cerebral hierarchy.

This criterion for mental ability, and thus for mental disability, found many adherents, especially in the US, where Terman’s revision of the Simon/ Binet tests was widely adopted, but debate continued over the nature of ‘defect’, and the use of purely intellectual criteria for a classification. Tredgold, although one of the foremost proponents of ‘national degeneracy’ and the need for segregation, maintained his original view that ‘social inefficiency’, regardless of IQ, should be the means by which ‘defectives’ should be classified: ‘the essential purpose of mind is that of enabling the individual to make a satisfactory and independent adaptation to the ordinary environment of his fellows…hence I regard the social as the most logical concept of mental deficiency’ (Tredgold, 1952, op.cit.). Pearson, amidst a polemic against American eugenics, also suggested that social inefficiency be the criterion for segregation (Pearson and Jaederholm, 1914; Pearson, 1914) as well as examining some of the theoretical statistical failings of the IQ adherents.

In England, therefore, the accepted classification of ‘mental deficiency’ was not altered by the new tests from that of the 1913 Act, and the only major change prior to the fifties was the inclusion, in the Mental Deficiency Act of 1927, of the effects of disease or injury as a cause of the ‘deficiency’. The later Act therefore added the definition that ‘Mental defectiveness means a condition of arrested or incomplete development of mind existing before the age of eighteen years, whether arising from inherent causes or induced by disease or injury’ thereby including such causes as encephalitis and meningitis which the definition of the 1913 Act had proscribed.

In the US, no nationally established provision or legal classification existed, but the American Association for the Study of the Feeble-minded (the latter term being then used in the US to cover all levels of learning disabilities) adopted a standard set of IQ levels, with corresponding descriptive terms:

Idiots—were defined as persons with a mental age of not more than thirty-five months or, if a child, an IQ less than twenty-five.

Imbeciles—were defined as persons with a mental age of between thirty-six and eighty-three months or, if a child, an IQ between twenty-five and forty-nine.

Morons—were defined as persons with a mental age between eighty-four and 143 months inclusive or, if a child, an IQ between fifty and seventy-four.

IQs and mental ages were measured by the Terman revision of the Binet Scale. The qualitative definitions attached to these groups are essentially similar to the first three categories used in England, i.e. ‘Idiots, Imbeciles, and Feebleminded persons’, and thus, to some extent, there was common agreement between the two systems. Both of them, however, suffered over the ensuing thirty to forty years from arbitrariness of application, with over-zealous use of the ‘moral defective’ category in England being particularly subject to criticism, and the early strict categorisation, and hence segregation, of those with IQs below seventy-five being the most controversial aspect of services in America (Wolfensberger, 1974).

The English position may be summarised by the following quotation from the Wood Report, the report of a committee of experts set up in 1924 to consider the amount an...

Table of contents

• COVER PAGE
• TITLE PAGE
• COPYRIGHT PAGE
• CONTRIBUTORS
• ACKNOWLEDGEMENTS
• INTRODUCTION: A POLICY OVERVIEW
• PART I: THE SERVICE CONTEXT
• PART II: IMPLEMENTING THE COMMUNITY CARE ACT