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Reprinted by permission of the National Association of Social Workers from Social Work Year Book 1960
NATIONAL ASSOCIATION FOR RETARDED CHILDREN, INC.
386 Park Avenue South
New York 16, N.Y.

MENTAL RETARDATION is a condition which originates during the developmental period and is characterized by markedly sub-average intellectual functioning, resulting to some degree in social inadequacy.

There is a great variation in the use of terminology relating to this condition, both in the United States and abroad. Several years ago the World Health Organization proposed that the problem be referred to as mental subnormality with two major sub-divisions reflecting causative factors: mental deficiency for those cases where biological factors have resulted in an impairment of the central nervous system, and mental retardation for those cases where the causative factor are in the social, economic, cultural, and psychological realms. Masland, Sarason, and Gladwin used this terminology for their survey. (1) However, there has been little inclination to follow their lead, and the American Association on Mental Deficiency has gone on record as recommending the overall use of the term mental retardation, their own official name notwithstanding. In any case, in perusing the literature in this field one needs to ascertain the particular author's use of terms, and this is especially important with foreign sources.

Another point of confusion of significance to the social worker also relates to etiology and involves the phrase "environmental factors." At first glance one would relate this term to the cases originating from social, economic, cultural, and environmental influences, and this is indeed appropriate. However, the term is also used within the broad biological category to separate endogenous -- that is, genetic -- factors from exogenous -- that is, environmental -- factors such as damage to the embryo from a virus infection of the mother, or injuries suffered during the birth process.

Even in limiting mental retardation to a markedly subaverage intellectual functioning, leaving out the sizable "dull normal" group, a wide realm is covered, from those so severely impaired as to require permanent bed care to those whose retardation is a problem only during the exacting days of public school attendance. Until recently the terms moron, imbecile, and idiot were used to denote degrees of impairment. Because of the unhappy connotations these words had assumed, the terms mildly retarded, moderately retarded, and severely retarded have been substituted. Another new terminology speaks functionally of these groups as marginally independent, semidependent, and totally dependent. With the increasing emphasis on educational programs the mildly retarded are often referred to as educable, the moderately retarded as trainable. The term feeble-minded has fallen into disuse altogether.

The problem of proper identification and classification does not pertain just to the individual afflicted with the condition but to the condition itself. Traditionally mental retardation was looked upon merely as a mental health concern, in so far as text books and governmental activities were concerned. Today's more comprehensive knowledge has made it clear that such unilateral identification is most misleading and apt to hinder effective program development, whether in practice, teaching, or research. Now the pediatrician claims a primary stake in this area as a general health rather than just a mental health concern, while from other sides the sociologist and social worker, the educator and the psychologist make similar claims. Not only have more than 90 causative factors been identified as operative in mental retardation, representative of these various fields, but they frequently manifest themselves in combinations requiring diagnostic and therapeutic measures from different fields. In practice this has resulted at the present time in heated legislative arguments as to which state agency should have prime responsibility for this field, and has similarly vexed the community planners.

No definite statistics are available regarding the numerical extent of mental retardation, and even the estimates differ widely. However, the most authoritative sources agree that the present number of mental retardates should be estimated for the United States as five million individuals or approximately thirty per thousand population. Of these thirty, about twenty-five are mildly retarded and five are moderately retarded, leaving one in thirty in the severely retarded group.

Several important considerations suggest caution in the use of these figures. First, in many cases the basis for these classifications remains in practice the intelligence quotient (I.Q.) arrived at on the basis of one or more standard tests, with different ceilings prevailing from state to state. In view of the fact that the numbers sharply increase the higher the ceiling is pushed, those using an I.Q. of 75 would include a far larger group among the mentally retarded than those using a lower figure of 70. Furthermore, we are not dealing with static groups. Studies both here and abroad have shown that an individual can move from one group into another as a result of improved performance. Finally, recent medical advances also substantially affect these figures: the advent of antibiotics has markedly decreased the previously high number of deaths from infectious diseases during childhood and adolescence, and this will increase the number of adult retardates in our communities. Medical skill also keeps alive an increasing number of infants who formerly would have died before or during birth.

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Historical

The first serious study of mental retardation came from two French physicians, Dr. Jean Itard and Dr. Edward Seguin, in the first decades of the nineteenth century. The first specific step in the United States was the opening of an institution in 1848, now known as the Walter E. Fernald State School, followed shortly by institutions established in New York, Pennsylvania, Ohio, Connecticut, and Kentucky. In 1876 a group of superintendents founded what is today known as the American Association on Mental Deficiency. High optimism regarding the effectiveness of institutional treatment prevailed in those early days and emphasis was on a forward-looking educational regime. When it later became clear that the high expectations could not be fulfilled, a strong counterreaction followed and the institutional programs were reduced largely to custodial care.

An event of lasting significance was the publication in 1877 of a study, by a volunteer welfare worker, of "the Jukes," a presumably degenerate family spreading illiteracy, disease, crime, and pauperism through the generations. Twenty-five years later Dr. Henry H. Goddard published his famous history of the "Kallikak family," reemphasizing what he saw as the dangers to society from inherited feeble-mindedness, and this study remained standard fare in our colleges and universities until the comparatively recent past, confirming the pessimistic attitude toward the feeble-minded and pointing to such measures as segregation and eugenic sterilization. While the Kallikak study is now thoroughly discredited, Goddard's leadership at the Training School at Vineland, and in particular his introduction of the Binet test to America, have earned him just and lasting fame.

A hopeful note was introduced with the establishment of special classes for retarded or backward children, first in Providence, Rhode Island, in 1896, followed in quick succession by large cities throughout the country. These classes were in general for the mildly retarded, then still known as morons; and it was not until the 1920's that there were introduced in a few localities classes for the moderately retarded, now called "trainables."

Parallel with the establishment of special classes, new developments occurred in the institutional field, as it became evident that the then prevailing policies of institutionalization would lead to more serious overcrowding. So-called colonies were organized for the dual purpose of moving part of the institutional population to cheaper quarters in rural areas, and of utilizing these people for remunerative work, first on farms and later in other work situations such as domestic work for the women. More recently the name "colony" has been given in several states to new residential facilities for the mentally retarded, but this is not related to the original colonies developed in various states. Somewhat later a system of parole was developed, and in the 1930's New York State pioneered with family care for the mentally retarded after the system had worked our successfully as an extension of the state hospital care for the mentally ill. Finally, one negative development should be mentioned in these brief historical comments. When the child guidance clinic movement came into being in the 1920's, mentally retarded children were included in the program; however, the clinics' attention focused more and more on the emotionally disturbed and mentally ill child, and soon retarded children found themselves excluded altogether from any of these services. At the time of World War II the field of mental retardation was seriously lagging as compared with developments in other areas of health, welfare, and education. There were exceptions to this in research, residential training, and public schooling, but these were isolated islands of excellence in a field that was as much neglected by budget directors as by institutions of higher education; as much by the related professions as by the general citizen.

The Role of the Parent Movement

In 1950, groups of parents of retarded children which had formed during the preceding few years came together in Minneapolis to establish the National Association of Parents and Friends of Mentally Retarded Children. The name of this organization was changed in 1952 to the National Association for Retarded Children (NARC). Within a few years this organization gained an influence in its sphere of work without parallel in the history of voluntary organizations in the welfare and health field. Although deeply concerned with the welfare of their own children, the leadership of NARC showed great wisdom in focusing on broad, long-range objectives. Realizing that significant improvement could only come from enlisting the aid of federal agencies in a nationwide attack on the problem of mental retardation in all its ramifications, the Association developed and presented to Congressional leaders a forward-looking program designed to overcome the long neglect of the field. At the same time, the Association recognized that one of the most serious weaknesses inhibiting progress in mental retardation was the lag in research and the scarcity of outstanding professional leadership. A scientific research advisory board was created to move forward these areas; and in 1955 a major three-year survey was launched to take stock of research activities in the field of mental retardation and to draw up a blue print of research needs. (2)

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Today, the Association has close to 700 units throughout the country and in military establishments on foreign soil. Many of them maintain pilot projects of community services for the mentally retarded, and all of them assist in community and statewide planning. Increasingly this participation is recognized formally and officially. A recent check of sixteen special state commissions dealing with the problem of mental retardation showed that in eight of them representatives of NARC units had been asked to serve as commission members. In the institutional area, parents' associations are rendering extensive volunteer service and have furnished special recreational equipment.

Altogether, the form, scope, and effectiveness of NARC's activities on the local, state, and national levels constitute a new phenomenon in the field of health and welfare services; and throughout the published literature of recent years, it is acknowledged that it was this citizen effort that brought new vigor and broader perspectives to the field of mental retardation.

Service Programs

In spite of the tremendous progress that has been made in the care of the mentally retarded, it is not possible to point to any one community in the United States which offers a well-rounded program for the retarded, let alone is quantitatively able to deal with the service load.

Such a well-rounded program must provide for the mildly as well as the severely retarded; for those living at home as well as those requiring residential care; for the young and for the adult. The fact that many of these programs require active participation from a wide cross section of the professions, none of which can claim the dominant role, creates problems as to the appropriateness of administrative sponsorship and source of support. At least as far as the severely retarded are concerned, many communities have had no experience in providing services and are hesitant to assume such new responsibilities in a period of shrinking budgets. The number of retardates needing service suggests that many of these functions should be considered public responsibilities, yet there is no precedent as to which ones should be a municipal, county, or state responsibility.

Planning for specific services is further complicated by the fact that as the new programs initiated during the past five to seven years are taking effect, the needs for service are changing. Thus, a retarded child whose parents had the benefit of competent clinical evaluation and helpful parent guidance, and who has had the benefit of more adequate diet and physical regime and of some preliminary training and group contact in a preschool situation, presents quite different needs in terms of schooling and leisure-time activities than his far less fortunate counterpart did ten years ago. In turn, the improved schooling he now can receive in many communities is likely to improve his status in so far as eventual adult rehabilitation services are concerned.

With so much in flux, qualitatively as well as quantitatively, long-range planning is difficult.

The key problem confronting parents of mentally retarded children is the need for competent diagnostic services. Rather than find a solution through increasing the resources of existing child guidance clinics under psychiatric auspices, the basic NARC legislative program suggests that funds be made available to the U.S. Children's Bureau for development of pediatric clinic facilities as part of the maternal and child health programs supported by the Bureau in all the states. By 1959, Bureau funds had assisted in establishment of 50 such clinics in 44 states, and more than 30 community retardation clinics were operating with support from other sources. Unfortunately, this tremendous improvement still falls far short of existing needs, and waiting lists of from six months to one year are still not uncommon. This creates serious problems since, in at least some of the cases, a delay in proper diagnosis and consequent delay in proper management of the child may result in irreparable further damage. Furthermore, many of these new clinics are limiting their services to infants and pre-school children. Thus no facilities are available for re-evaluation of older children. Yet with the present state of knowledge, and thus further evaluations are needed as the child moves through developmental Stages.

With the establishment of so many special retardation clinics, the need for interprofessional as well as intraprofessional communication has become particularly acute; yet wide variations in the use of terminology and classifications provided a formidable block toward that goal. Therefore, the American Association on Mental Deficiency, through its Project on Technical Planning and Mental Retardation (supported by funds from the National Institute of Mental Health) undertook preparation of an extensive Manual on Terminology and Classification in Mental Retardation. (3) This Manual, published in September 1959, utilizes largely the etiological terminology of the American Medical Association's Standard Nomenclature of Diseases and Operations. A particularly significant contribution is the introduction of a new behavioral or psychological classification, using as its base two dimensions -- measured intelligence and adaptive behavior. It remains to be seen how quickly this new, diagnostically far more adequate classification will be generally accepted by all professions concerned as a substitute for the more and more inadequate traditional classification based on intelligence test performance alone.

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Interprofessional communication is not the only problem facing the clinics. Much thought has been given recently to improving communication between the clinic and the parent. Experience has brought out that it is difficult for the average parent to encompass the ramifications of a clinical diagnosis of mental retardation, and for this reason a number of clinics are presently supplementing their program of parent counseling with a broader program of parent education.

Furthermore, management of the more severely retarded child whose condition is often aggravated by serious physical impairments poses many special problems for the family. A number of clinics have therefore found it advisable to establish home training programs, usually utilizing the services of a specially trained public health nurse.

Since the prevailing attitude discourages more and more placement of infants or very young children in institutions unless they require intensive nursing care and medical supervision, the need for services to afford the child's mother some relief from care is becoming more evident. However, few communities so far are prepared to provide this relief either through homemaker service or day care. See FOSTER CARE FOR CHILDREN and HOMEMAKER SERVICE. While this type of service would be geared primarily to the needs of the mother and the family at large, communities have also begun to develop preschool services particularly adapted to provide group experiences to the young retarded child who formerly usually grew up in isolation from age-mates. For children with multiple handicaps, such programs also provide opportunities for physiotherapy, which often may be essential to equip the child for the more demanding standards of later schooling. General development of this type of service eventually may result in a substantial increase in admissions of the more severely retarded children to special education programs in the public schools.

Role of the Public Schools

The situation regarding schooling for the mentally retarded presents a very uneven picture throughout the country as is, of course, also the case with other specialized school public schools. Probably only one-fifth, or somewhat over 200,000 are receiving such instruction. While the situation is improving from year to year, there are still states where even classes for the high-grade retardates, the so-called "educables", are not yet mandatory upon the school boards. Even those school systems which are ready to provide for these children have difficulties establishing classes because of the acute shortage of qualified special education teachers. Appropriation by Congress in 1959 of $1,000,000 to advance training opportunities for teachers of the mentally retarded should ameliorate the situation. However, the results of such a program will not be immediately effective.

A controversy of major significance, which is evident in many parts of the country, pertains to schooling of the more severely retarded, the so-called "trainable" children. Both from school administrators and from certain leaders in the field of special education has come the assertion that these children are not fit subjects for the public schools but should be a responsibility of welfare agencies. On the other hand, a recent sociologically oriented text reports that an increasing number of public schools, utilizing their social service staffs in conjunction with the work of special teachers, are accepting a primary responsibility for the trainable as well as the educable retardate, and are seeking to discharge this responsibility with the aid of community welfare agencies whose resources they call upon as needed. (4) This matter is of crucial significance to community planners, not only from the point of view of providing the best possible care for these children but also because of the fiscal problems involved. If classes for trainables are a responsibility of the public schools, the source of funds is clearly established. If, however, the task of training the severely retarded is to be left completely to non-school community welfare agencies, as some educators advocate, there would not only be a question in many states as to administrative responsibility as well as source of funds, but there would even be a question as to whether this should be a public or a private responsibility. Therefore, it is significant that 37 states (as of August, 1959) allow for state-level support of classes for trainable children, either by specific mandatory or permissive legislation or by administrative regulation or interpretation.

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One of the arguments made against assumption of this responsibility by the public schools is that sooner or later children classed as trainable will find their way into public institutions. This point has been effectively refuted by a study by Gerhart Saenger, sponsored by the New York State Interdepartmental Health Resources Board and published under the title The Adjustment of Severely Retarded Adults in the Community. (5) Saenger followed up a large sampling of pupils who, between 1929 and 1956, had attended classes in the public schools of New York City set aside for pupils with I.Q's of between 40 and 50, that is, the upper level of the trainable classification. The findings revealed that two-thirds of these former pupils were living in the community (1,742 out of a total of 2,640); only 26 per cent were institutionalized. (The remaining 8 per cent had died since leaving school.) Even though some of those now in the community may eventually be admitted to institutional care, others who were so committed might well have remained in the community had there been available the persently -sic- still limited facilities. Twenty-seven per cent of those who resided in the community worked for pay at the time of the study; and an additional 9 per cent had no job at the time but had previously worked. Thus the Saenger study, undoubtedly of greatest significance to community planners, points up that the trainable group not only must be considered for public schooling but, in addition, merits screening for vocational preparation or rehabilitation.

Rehabilitation

While the mentally retarded have been included within the scope of activities of the federal Office of Vocational Rehabilitation since the Barden-LaFollette amendments of 1943, it was only since the amendments of 1954, Public Law 565, that there has been distinct growth and development of vocational rehabilitation services for this group. Specialized sheltered workshops for the mentally retarded have rapidly grown in number since that time; and in 1959 the National Association for Retarded Children published the results of a survey which reported on 56 sheltered workshops operated by NARC member units. Twenty-six of these included young adults classed as trainable. Experience in the workshops over the past several years has brought out clearly that the mentally retarded can be gainfully employed in a wide range of jobs, including manufacturing, and that the success of the retardate in the workshop does not depend as much on his intellectual endowment as on his personality structure and adaptive behavior.

The success of present rehabilitation programs has suggested an extension beyond the limits of productive, potentially gainful activity into so-called independent living programs. Here the emphasis is on training the severely handicapped person toward greater independence in matters of simplest daily living, such as self-care. In considering legislation to that effect, Congress was made aware that a question can be raised as to whether such program should be the responsibility of the public welfare agency or possibly be a joint effort of the two.

Residential Care

In view of the fact that not only lay citizens but many professional people are inclined to associate the problem of mental retardation with institutionalization, it is significant that federal figures for 1957 indicate that of the 5,000,000 retarded persons in the United States, only 150,000 reside in public institutions. These same figures indicate that the number of high-grade retardates is decreasing and the number of severely retarded increasing in the institutional population. Practically all states have long waiting lists, so that the figure for needed institutional beds exceeds, by far, the 150,000 presently available. However, opinions vary sharply as to future trends. In the opinions of some the extension and improvement of community programs will limit institutional placement to the most severely retarded only. Others maintain that the institutions will also have increasingly a function as centers for intensive training and physical restoration, thereby improving the individual's capacity for adjustment in the community. Furthermore, the increasing life span of the mentally retarded brought about by improved health care, and in particular by the use of antibiotics, most likely will also eventually result in the need of residential facilities for these individuals in their later years.

It has been suggested that these tasks are sufficiently diverse in nature, requiring different facilities and different staff, to warrant breaking up the present large institutions into smaller units, better adapted to the needs of the respective residents and located closer to population centers.

Without doubt the institutions have not kept pace with the considerable improvement made in community facilities since 1950. The absence of evaluative research in the area of residential care is particularly significant in that regard.

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Special Aspects

The recent advances in mental retardation have not so much increased the number as their "visibility". The Social Security Act amendments extending benefits beyond the age of 18 to those children of wage earners who were permanently and totally disabled before age 18 have been of particular importance. In 1957, two-thirds of those eligible were diagnosed as mentally retarded. All this has resulted in increasing attention being given to the legal status of the mentally retarded, to provisions for guardianship, and to general community acceptance.

Governmental Programs

The field of mental retardation provides impressive testimony as to the effectiveness of enlightened Congressional leadership. A great share of the rapid progress is due to earmarked appropriations for special programs in mental retardation made to the U.S. Children's Bureau, the U.S. Office of Vocational Rehabilitation, the U.S. Office of Education, the National Institutes of Health, and the National Institute of Neurological Diseases and Blindness, all of which, in turn, have stimulated state programs.

On the state level, the Council of State Governments has given stimulating leadership; and a study published by NARC in 1959 lists 20 legislative and governors' commissions concerned with state legislation and programming for the mentally retarded. (6)

Research Developments

A comprehensive survey of recent research developments is provided in the volume Mental Subnormality. (7) Work in the medical and biological sciences seems to be quite superior to what is being undertaken in psychology, sociology, and education. Undoubtedly this is due to a lack of well-trained research workers in those fields. The rapid program developments and the demand for still further increases in service make evaluative research an urgent necessity in addition to the long-range basic research. Biochemical studies are pushing ahead the frontiers of research in mental retardation and one may well expect significant new findings as to a common base for certain types of mental illness and mental retardation.

Prevention

Phenylketonuria is a biochemical disturbance which usually results in serious retardation. Discovered in 1934, it is now subject to a simple inexpensive test and, if detected in earliest infancy, can be controlled by means of a specific radical diet. While numerically this disease accounts for only a small fraction of the mentally retarded, it has highlighted the distinct possibilities for prevention of mental retardation not just in the distant future but in the here and now. However, medical science has discovered other means of preventing certain types of mental retardation: by surgical intervention, by improved techniques of delivery, and by preventing damaging conditions during pregnancy. Translated into community planning this means that mental retardation has become a promising new field for public health action. The significance of such prevention can materially be measured by the fact that for the average state the admission of every 30 patients to the institution for retardates means an eventual expenditure by the taxpayers of one million dollars at minimum.

International Developments

The founding of the National Association for Retarded Children was paralleled by the development of similar organizations at that time in several European countries. In the Far East an active parents' organization existed in Japan. The Scandinavian countries lead in the development of small residential units. Holland has done outstandingly well in the development of sheltered workshops. The most significant international work so far has been a group of seminars on the mental health of the subnormal child sponsored by the European Regional Office of the World Health Organization in 1957 and 1959.

Bibliography (8)

American Association on Mental Deficiency. State and Private Training Schools for the Mentally Retarded. A directory. Issued biennially.
-----. A Manual on Terminology and Classification in Mental Retardation. Supplement to American Journal of Mental Deficiency, September 1959.
American Journal of Mental Deficiency. Quarterly.
Boggs, Elizabeth. "State Programming for the Mentally Deficient" in Community Organization 1958. Columbia University Press, New York. 1958. Page 130-9
Children Limited. Bimonthly.
Davies, Stanley, P. The Mentally Retarded in Society. Columbia University Press, New York. 1958. 248 pp.
Dittman, Laura. The Mentally Retarded Child at Home. U.S. Children's Bureau, Washington, D.C. 1959. 98 pp.
Dybwad, Gunnar. "Community Organization for the Mentally Retarded" in Community Organization 1959. Columbia University Press, New York. 1959.
Hart, Evelyn. How Retarded Children Can Be Helped. Public Affairs Pamphlet No. 288. Public Affairs Committee, New York. 1959. 28 pp.
Hormuth, Rudolf. "Community Clinics for the Mentally Retarded," Children. September-October 1957.
Kelman, Howard R. "Social Work and Mental Retardation," Social Work. July 1958.
Masland, Richard L., Seymour B. Sarason, and Thomas Gladwin. Mental Subnormality. Basic Books, Inc., New York. 1958. 442 pp.
Murray, Dorothy. "Needs of Parents of Mentally Retarded Children," American Journal of Mental Deficiency. May 1959.
National Association for Retarded Children. Legislative and Governor's Commissions Concerned With State Legislation and Programming for the Mentally Retarded. 1959. 28 pp.
-- -- . Responsibility for Costs of Maintenance and Training in Public Institutions for the Mentally Retarded. 1958. 26 pp.
-----. The Evaluation and Treatment of Children in Clinics. 1956. 132 pp.
Powers, Grover F. "Professional Education and Mental Retardation," Pediatrics. December 1957.
Saenger, Gerhart. The Adjustment of Severely Retarded Adults in the Community. N.Y. State Interdepartmental Health Resources Board, Albany. 1957. 176 pp.
Stacey, Chalmers L. and Manfred F. DeMartino, eds. Counseling and Psychotherapy with the Mentally Retarded. The Free Press, Glencoe, Ill. 1956. 478 pp.
U.S. Department of Health, Education, and Welfare. Departmental Committee on Mental Retardation. Mental Retardation: Programs and Services of the U.S. Department of Health, Education, and Welfare. 1959. Mimeographed.
World Health Organization. The Mentally Subnormal Child. Columbia University Press, New York. 1954. 46 pp.