Challenges in Mental Retardation 9780231879491

Table of contents :
Foreword
Preface
Contents
Part I. The Broad View
1. Mental Retardation
2. Are We Retarding the Retarded?
Part II. The Family and the Formative Years
3. Early Childhood Education Is Essential to Handicapped Children
4. Group Approaches in Working with Parents of the Retarded: An Overview
5. Present-Day Concepts of Family Life and Parent-Child Relationships
6. Not All of One Mold
Part III. The Child and the Adult in Residential Care
7. New Horizons in Residential Care of the Mentally Retarded
8. The Lost Years
9. The Team Approach in Daily Care and Management
10. Medical Needs of the Displaced Retarded Child
Part IV. The Retarded Youth in Social Conflict
11. The Problem of Institutional Placement for High-Grade Mentally Defective Delinquents
12. Planning for the Retarded Delinquent
Part V. The Retarded Adult
13. Rehabilitation for the Adult Retardate
14. Administrative and Legislative Problems in the Care of the Adult and Aged Mental Retardate
15. Developing Patterns for Aid to the Aging Retarded and Their Families
16. Income and Social Services for the Mentally Retarded: A Specialized Task for Social Welfare
Part VI. Organizing for the Future
17. Trends and Issues in Mental Retardation
18. Blueprints or Reality?
19. Community Organization for the Mentally Retarded
20. Cooperation Among Voluntary Health Organizations
21. The Role of Public and Voluntary Services in Prevention and Treatment
Appendix: Mobilizing for Action Around the World

Citation preview

Challenges in Mental Retardation

Challenges in Mental Retardation by Gunnar Dybwad

COLUMBIA UNIVERSITY PRESS New York and London

1964

Copyright © 1964 Columbia University Press Library of Congress Catalog Card Number: 64-14438 Manufactured in the United States of America

Foreword T h e publication of selected papers by Gunnar Dybwad marks the confluence of three significant events—the coming of age of an organization, the high point of a distinguished professional career, and the achievement of a more intelligent understanding of the mentally retarded in our society. T h e organization (The National Association for Retarded Children) and Gunnar Dybwad, whose career has been devoted to improving the lot of the retarded and similar causes, are to a very considerable degree responsible for the new enlightenment on the nature as well as the problems and challenges of mental deficiency, and for substantial advances in philosophy, methods of care, and education. Working through the established channels of the Association and with the parent groups throughout the country which comprise its membership, Gunnar Dybwad and his colleagues have helped mightily in lifting the whole level of care of the retarded and in bringing a new note of encouragement and hope to those who have been laboring long and hard in their behalf. At the close of 1963 Dybwad retired as Executive Director of the National Association for Retarded Children. In the future he and his wife, who has been a devoted and able partner, hope to engage in international work for the retarded. This would be not only a logical move at this point in their careers but a timely and highly useful one in so far as the field itself is concerned. Rosemary Dybwad, working as a full-time volunteer for the Association for the last four years, has established communication and in many instances close relations among parent and other groups interested in mental retardation in more than sixty countries, and has thus laid the groundwork for an increasingly productive international program. A paper by her in this collection includes some of her experiences and observations in corresponding with and acting as

vi

Foreword

informal consultant to scores of individuals and organizations in many lands. Gunnar Dybwad received the Doctor of Laws degree from the faculty of Law and Political Science, the University of Halle, Germany, in 1934 and in 1939 graduated from the New York School of Social Work. Research in New Jersey and New York State reformatories and six years of clinical work at the state schools for boys in New York and Michigan gave him a solid firsthand experience with disturbed youth and with their parents. Among the families he came to know were many young people whose inadequate intelligence combined with a lack of constructive educational opportunity gave little hope for even a reasonable life adjustment. From 1943 to 1951 he served with distinction as supervisor of the Department of Child Welfare in Michigan, where he made an outstanding record and gained a grass roots knowledge of state services that stood him in good stead in his subsequent work. As consultant to the Secretary of the Army and the Department of State for several months during 1949 and 1950, Dybwad had an unusual opportunity to apply his social work skills and his keen insight to the problems of child welfare in a new and unusual setting, that is, the U.S. Occupied Zone in Germany. During this period he conducted a child welfare institute for social workers in Germany. His European background and his philosophy of social work as an instrument of international understanding gave him a unique qualification for this assignment. During the six-year period from 1951 to 1957, Gunnar Dybwad served as Executive Director of the Child Study Association of America, an organization well known in this and other countries for its pioneer work in parent education and parent-child relations. In this position he succeeded the founder, Sidonie Gruenberg, a leading figure in the field for many years and a woman of unusual ability. Even so, the Child Study Association moved forward under Dybwad's leadership—one might even say under the impact of his leadership. He built on the foundation and struc-

Foreword

vii

ture created by his distinguished predecessor and added his own colorful and creative touch and originality. It was the directorship of the National Association for Retarded Children, however, that furnished to Gunnar Dybwad his greatest opportunity and challenge to date. Here his past experience with families in stress, with parent groups, with voluntary organizations, state departments, and the federal government came into play with a sharp focus on the needs of the retarded. His forte has been in face-to-face negotiations with local, state, and national groups; in outlining problems to legislative committees, where he has shown extraordinary skill; and in the ability to see deeper and further than most. These gifts along with a delightful sense of humor, an exhaustive knowledge of the field and the people in it, and the courage to deal with the truth rather than capitulate to the easy compromise explain to some degree the nature and extent of his great contribution to the field. The effect has been electric, bringing new currents of thought and a new spark to the members of the Association, new light to the public, and a clear delineation of issues to the professional community. A reading of these papers will convey some of the stress and tension of the times, a knowledge of the forces and factors at work for and against the best interests of the retarded, and a great deal concerning the philosophy and convictions of a man who can both think and act. LEONARD W. MAYO

Executive Director, Association for the Aid of Crippled Children Chairman, President's Panel on Mental Retardation (1961-62)

Preface Gunnar Dybwad was Executive Director of the National Association for Retarded Children for seven of its thirteen years. During these years he and NARC challenged each other, and together challenged the American people, to do justice to the mentally retarded. Not "simple justice," but full justice in all its complexity—the justice of respect, justice in opportunities for retarded children to grow, to learn, and to succeed within their limits, justice under law, justice in the long view, and that ultimate justice of prevention, by all attainable means, of mental retardation in the yet unbom. Dr. Dybwad's prepared talks and articles, addressed to a wide variety of audiences, constitute one kind of testimony to this process of challenge—testimony some of which, it seemed, should be gathered "for the record" at this time and made available to a wider readership. NARC extends its thanks to the associations and publishers who have graciously permitted republication of papers selected for this book, among them the American Association on Mental Deficiency, the American Public Health Association, the National Association of Social Workers, the National Council of Churches of Christ, the National Association for Nursery Education, the Ross Laboratories, and the Woods Schools. We who, as successive tenants of the elective office of President of the National Association for Retarded Children, shared the tasks and rewards of leadership with Gunnar Dybwad through his seven years know that the excitement and upthrust, the hard work and determination, as well as the challenges, which these years brought forth were all more intense because of the unique intellect and energy of our chief of staff. Now he will seek still other challenges for himself in the cause of those who need his kind of championship. The decision of the NARC Board of Directors to

χ

Preface

couch its tribute to him on this occasion in the living form of this collection of selected papers is one in which we join wholeheartedly. August ι, 1965 J.

CLIFFORD

MACDONALD

ALTON F .

LUND

E L I Z A B E T H M . BOGGS VINCENT J . JOHN

FITZPATRICK G.

FETTINGER

Contents Foreword

ν

Preface

ix I.

THE BROAD VIEW

ι.

Mental Retardation

2.

Are We Retarding the Retarded? II.

3. 4. 5. 6.

19

T H E F A M I L Y AND THE FORMATIVE YEARS

Early Childhood Education Is Essential to Handicapped Children (with Edward LaCrosse)

89

Group Approaches in Working with Parents of the Retarded: An Overview

41

Present-Day Concepts of Family Life and Parent-Child Relationships

53

Not All of One Mold

76

III.

7.

3

THE CHILD AND THE ADULT IN RESIDENTIAL CARE

New Horizons in Residential Care of the Mentally Retarded

83

8.

T h e Lost Years

9.

T h e Team Approach in Daily Care and Management

109

Medical Needs of the Displaced Retarded Child

113

10.

IV.

99

THE RETARDED YOUTH IN SOCIAL CONFLICT

11.

T h e Problem of Institutional Placement for High-Grade Mentally Defective Delinquents 1x7

12.

Planning for the Retarded Delinquent

142

Contents

xii V.

13· 14. »δ-

ι

6.

THE RETARDED

ADULT

Rehabilitation for the Adult Retardate

153

Administrative and Legislative Problems in the Care of 164 the Adult and Aged Mental Retardate Developing Patterns for Aid to the Aging Retarded and Their Families 174 Income and Social Services for the Mentally Retarded: 185 A Specialized Task for Social Welfare VI.

ORGANIZING

FOR T H E

FUTURE

Trends and Issues in Mental Retardation Blueprints or Reality?

197 221

19·

Community Organization for the Mentally Retarded

233

20.

Cooperation Among Voluntary Health Organizations

247

21.

The Role of Public and Voluntary Services in Prevention and Treatment: Implications of the Findings of the President's Panel on Mental Retardation for Programs and Services to Children and Youth 270

ΐ7· i8.

Appendix: Mobilizing for Action Around the World, by Rosemary F. Dybwad 281

I. The Broad View

1 Mental Retardation Mental retardation is a condition which originates during the developmental period and is characterized by markedly subaverage 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 subdivisions 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 factors 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 over-all 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 ' S e e Richard L. Masland, Seymour B. Sarason, and T h o m a s Gladwin, Subnormality (New York: Basic Books, Inc., 1958).

Mental

4

The Broad View

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 textbooks 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.

Mental

Retardation

5

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 the 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. 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 Massachusetts 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

6

The Broad

View

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 1920s 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

Mental

Retardation

1

original colonies developed in various states. Somewhat later a system of parole was developed, and in the 1930s New York State pioneered with family care for the mentally retarded after the system had worked out successfully as an extension of 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 1920s, 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 Word 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. T h e 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 N A R C 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 over-

The Broad

8

View

come 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 in 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 blueprint of research needs.* 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 state-wide 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 Ν A R C 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. •Ibid.

Mental

Retardation

9

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 leisuretime 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 N A R C legislative program suggested 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 195g, 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

10

The

Broad

View

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 preschool children. Thus, no facilities are available for reevaluation of older children. Yet with the present state of knowledge, longrange predictions are usually not feasible 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. 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 * American Association on Mental Deficiency, Λ Manual on Terminology and Classification in Mental Retardation, Supplement to American Journal of Mental Deficiency, September, 1959.

Mental

Retardation

11

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. 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 programs. It is estimated that well over a million children in the United States are in need of mental retardation programs in the 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

12

The Broad

View

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. O n 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 T h i s 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 sig• Stanley P. Davies, The Mentally Retarded in Society (New York: Columbia University Press, 1958). While taking no position on the mandatory inclusion of the severely retarded in the school enrollment, the author states: "For retarded children in the school enrollment, the school itself should assume the entire responsibility for supervision through its social service. Practically speaking, however, and excepting the larger cities, the schools probably will not have, in the near future, enough social services to deal effectively with the extra-school problems of mentally de&cient children."

Mental

Retardation

»3

nificant that 37 states (as of August, 1959) allow for state-level support of classes for trainable children, either by specific mandatory or premissive legislation or by administrative regulation or interpretation. 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. T h i s 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. T h e 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 percent were institutionalized. (The remaining 8 percent 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 presently still limited facilities. Twenty-seven percent of those who resided in the community worked for pay at the time of the study; and an additional 9 percent had no job at the time but had previously worked. T h u s 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 ' G e r h a r t Saenger, The Adjustment of Severely Retarded Adults in the Community (Albany: New York State Interdepartmental Health Resources Board, 1957)·

»4

The

Broad

View

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 N A R C 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. T h e 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 a program should be the responsibility of the public welfare agency or the vocational rehabilitation 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 bed exceeds, by far, the 150,000 presently available. However, opinions vary sharply as to future trends. In the opinions of some the extension and

Mental

Retardation

!5

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 f-acilities 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. T h e absence of evaluative research in the area of residential care is particularly significant in that regard. Special

Aspects

The recent advances in mental retardation have not so much increased the number of the mentally retarded in the community as their "visibility." T h e 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.

ι6

The Broad

View

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 Ν A R C in 1959 lists 20 legislative and governors' commissions concerned with state legislation and programing for the mentally retarded.® Research Developments A comprehensive survey of recent research developments is provided in the volume Mental Subnormality.'' 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 'National Association for Retarded Children, Legislative and Governor's Commissions Concerned with State Legislation and Programming for the Mentally Retarded. 1 Masland, Sarason, and Gladwin, Mental Subnormality.

Mental preventing d a m a g i n g

Retardation

conditions

during

pregnancy.

17 Translated

into c o m m u n i t y p l a n n i n g this means that mental retardation has become a promising new field for p u b l i c health action. T h e significance of such prevention can materially be measured b y the fact that for the average state the admission of every 30 patients to the institution for retardates means an eventual e x p e n d i t u r e b y the taxpayers of one m i l l i o n dollars at m i n i m u m . International

Developments

T h e f o u n d i n g of the N a t i o n a l Association for R e t a r d e d C h i l dren was paralleled by the d e v e l o p m e n t of similar organizations at that time in several E u r o p e a n countries. In the Far East an active parents' organization existed in Japan. T h e Scandinavian

coun-

tries lead in the d e v e l o p m e n t of small residential units. H o l l a n d has done outstandingly well in the d e v e l o p m e n t of sheltered workshops. T h e most significant international work so far has b e e n a group of seminars on the mental health of the subnormal child sponsored b y the European R e g i o n a l Office of the W o r l d H e a l t h Organization in 1957 and 1959.

BIBLIOGRAPHY 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. New York: Columbia University Press, 1958. Pages 1 3 0 - 3 9 . Children Limited. Bimonthly. Davies, Stanley P. The Mentally Retarded in Society. New York: Columbia University Press, 1958. 248 pp. Dittman, Laura. The Mentally Retarded Child at Home. Washington, D.C.: U.S. Children's Bureau, 1959. 98 pp. Dybwad, Gunnar. "Community Organization for the Mentally Re-

ι8

The Broad

View

tarded," in Community Organization 1959. New York: Columbia University Press, 1959. Hart, Evelyn. How Retarded Children Can Be Helped. Public Affairs Pamphlet No. 288. New York: Public Affairs Committee, 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. New York: Basic Books, Inc., 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. Albany: N.Y. State Interdepartmental Health Resources Board, 1957. 176 pp. Stacey, Chalmers L „ and Manfred F. DeMartino, eds. Counseling and Psychotherapy with the Mentally Retarded. Glencoe, 111.: T h e Free Press, 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. New York: Columbia University Press, 1954. 46 pp.

Reprinted by permission of the National Association of Social Workers from Social Work Year Book, i960. Copyright i960 by National Association of Social Workers, Inc.

2 Are We Retarding the Retarded? Presented at the Tenth Anniversary Convention of the National Association for Retarded Children, Minneapolis, Minn., in October, i960 In striking contrast to the vigorous and determined leadership of the early pioneers of our movement who pursued their course of action in the face of seemingly unconquerable odds, there is too much readiness in our midst today to accept the limitations others set to our work, and indeed increasingly one hears the comments " W e are tired" and " W e do the best we can." Surely a vital organization should not be tired after just ten years of existence. And just as our early leaders were not content when officials or agencies assured them in those days that they did "the best they could do," but demanded the best possible for the retarded, we, as local, state, and national association, must apply the same measuring stick to our own present efforts. There is of course much to report that is encouraging and that is indeed inspiring. In preschool groups, in public school programs for the retarded, in residential care and sheltered workshops, there are many examples of outstanding programs which represent new imaginative thinking and set new frontiers. But all too often one finds that programs have been at a standstill, local units are content to "hold the line," and far from planning aggressively a well-rounded program for all the retarded, many communities offer a very limited program to only a small portion of the retarded. When it takes not only months but years to put into effect simple public health measures, such as those needed for the prevention of mental retardation due to phenylketonuria so that as a result of these delays children needlessly become victims of this

20

The

Broad

View

now controllable disease, it is time to become impatient, it is time to get angry. Perhaps there is need for us to remind ourselves from time to time of the accomplishments of Dorothea Dix, the New England schoolteacher who in the last century singlehandedly fought for humane treatment of the mentally ill and the mentally retarded, appearing before and gaining support from state legislature after state legislature at a time when there was no place for women in public life. Or perhaps we must remind ourselves with greater frequency of that most effective champion of our cause, Representative John Fogarty, who relentlessly day after day battled for hours on end in the House of Representatives on behalf of the retarded and of other handicapped people and who finally won the fight after everybody was sure it was a hopeless effort. Did he do this because he is a politician or because he is a man with a purpose and the determination to stick with it? Lest you feel that I am shouting for more action just for action's sake, that I am asking that we storm forward without really any place to go, let me specify some of the areas where I feel we are falling behind from lack of determined push. It was nearly 100 years ago that Dr. Samuel Howe, the first superintendent of this country's first institution for the retarded, now the Fernald School in Massachusetts, decided that he would do well to separate the retarded residents of his institution into three groups in accordance with the severity of their handicap. After the introduction of Binet's intelligence test early in this century, a new seemingly scientific basis was provided for this threeway classification. Ever since then the terms "moron," "imbecile," and "idiot" have been considered as clearly delineated groupings of the retarded, and while in the early 1950s we substituted the words "marginally independent," "semidependent," and "totally dependent," to this day our institutional facilities and many of our community services consider this an adequate basis for planning. Thus when it comes to assigning mentally retarded children and

Are

We Retarding

the Retarded?

21

adults to services and facilities, the mental age is still taken as a determining factor in spite of the fact that studies in this country and in Europe have shown very clearly both that there can be a distinct upward change in the rating of the mentally retarded person who is subject to favorable, stimulating environment and training and also that the mental age of a mentally retarded person frequently shows such a spread between his various abilities as to be an unreliable factor in placement. Yet over and over again we stymie the potential growth and maturation of the retarded by limiting their program to our narrow expectations. In the early 1950s when the educators looked for a basis for what appeared to be a needed differentiation between school programs for the mentally retarded, the terms "trainable" and "educable" were introduced and seemed to serve the purpose well. But practice has moved ahead and today this sharp dividing line—identified usually by an I.Q. figure—no longer fits our expanding knowledge. We see new, rather fluid groupings of upper and lower trainables and upper and lower educables. Can one say that this is just "playing with words" when their use provokes tensions and misunderstandings in many of our communities and states, and conveys a basically wrong concept of the problem with which we deal? Let me give a very specific and, it so happens, most up-to-date example: Dr. Samuel Kirk, the distinguished educator, was quoted in a meeting here as having recommended that classes for the trainable should be removed from the jurisdiction of the public schools and placed in the department of mental hygiene or department of welfare. Such a step would, of course, create a major administrative upheaval in many places and so I took the opportunity of discussing this with Dr. Kirk. What I found is not surprising. Dr. Kirk does indeed feel that in the lower echelons of the trainable group there are individuals who are unsuited for school programs and should be in day-care programs under child welfare auspices. But by no means does he feel that ongoing classes now in the public schools should be transferred to another department not under educational auspices. This is a good example of

22

The Broad

View

the problems and confusion which arise from what has become a too limiting terminology, a terminology which no longer adequately serves the need of the retarded. Another instance is the increasing use of the terms "educable" and "trainable" in the sheltered workshop realm, where this school terminology is inappropriate and prejudicial to the interests of the more severely retarded. Let me cite a few other examples where we are retarding the progress of the retarded in the field of sheltered workshops and rehabilitation. It so happens that yesterday I received from Mr. Samuel A. Brown of Arlington, Virginia, one of the many volunteers who assist our International Relations Committee, the translation of an article from the August, i960, journal of our Danish sister-organization. T h e article deals with the development of workshops for the retarded in Holland and brought back to me vivid memories of my own visit there. There is no question but that the Dutch have the most progressive workshops for the retarded anywhere in the world. Considering that Holland is a small country, devastated during the last world war and shortly thereafter literally ripped apart by the worst flood on record, we might well ask ourselves why we as a wealthy nation are lagging so far behind. The article perhaps provides an answer in its very first sentence: " A realistic adaptation of the mentally retarded to society can be achieved by not underestimating and by not overprotecting them. By giving them a real chance many can hold their own— even including the imbeciles [i.e., the more severely retarded]." I hope many of you who had the opportunity of hearing Dr. Rick Heber last night are reminded of the very significant finding he reported to us—that a too gentle, too permissive, too nondemanding regime for the retarded, one which protects him from failure, works very much to his detriment and seriously interferes with future training. This insight is reflected in the program of these Dutch workshops. As I travel about this country, I am at times amused but also chagrined at the many explanations I get as to why our workshops often do not even come up to what used to be known as

Are

We Retarding

the

Retarded?

*3

"banker's hours." The Dutch insist that their workshops are run for the full working day; they are not unmindful of the value of recreational and other socializing activities for the retarded, but these are arranged for during the evening hours, something we seem to consider too much of a bother. Perhaps I should quote here the statement by Dr. Speijer, a public health official who administers programs for the retarded in T h e Hague—and please keep in mind that he is including the more severely retarded. "Our basic standpoint is simply that in reality there is no tremendous difference between the mentally handicapped and 'us others.' " This attitude is reflected as much in the Dutch workshop product as in the workshop procedure. Listen to what Dr. Speijer had to say on this to his Danish audience: A completely wrong way of going about it is to manufacture those things which are traditionally prepared by the mentally handicapped and sold at bazaars. We must get away completely from everything bearing the stamp of philanthropy, away from embroidery and brushes. The workshops must manufacture products which can be sold on the open market and stand up to competition. One other factor which, it seems to me, is of greatest import here pertains to the approach to training. T h e thrifty and efficient Dutch think nothing of having the training of a mentally retarded in a workshop (we are not talking here about school) extend to four and even six years. Compare this with our own impatience, our tendency to stamp people failures after a far too short training and trial period. We might make reference here to another instance of "retarding the retarded": I hear in my travels that our parents hesitate to send adolescent girls and young women to workshop programs for fear harm may befall them. Furthermore, those of you who have studied the splendid report by Gerhart Saenger, The Adjustment of Severely Retarded Adults in the Community, will remember that he comments upon the fact that the adjustment of the girls was far less satisfactory than that of the boys, presumably because they did not have the freedom of movement in the community which is so essential as a learning and growing experience. Yet

24

The

Broad

View

Saenger's study also showed that the great fears of sex activity on the part of the severely mentally retarded have little basis in fact. We must ask ourselves what is the picture we present to the public—of ourselves and of those for whom we speak? If we talk only of retarded children, we must not be surprised if the community and the authorities are not ready to support programs for retarded adults. But also, if in our statements we seek narrowly the advantage of our own charges only and do not indicate a knowledge of and concern for the needs of other handicapped groups, we deprive ourselves of effective help from community agencies, community leaders, etc., and in the long run we retard our progress. This does not mean that we should neglect our cause, or fail to speak out specifically on our needs, but any step must be taken with an understanding of the total situation. T h e situation is not such that we can afford as local associations to pick from the broad challenge shown on our now famous circle chart—"A Well-Rounded Program for the Retarded"—whatever activity appeals to our membership or "fits in" best with the situation we find in our community or, worst of all, happens to appeal to our benefactors. A man who promises us money under restrictive conditions which keep the local association from doing what is essential, such as supporting its state association, is not a benefactor at all. Many of our units continue to emphasize the school classes they operate exclusively and do not recognize the long-range problems of the adult retarded, whose progress will thus be retarded by a lack of planning. In city after city we meekly submit to the dictates of people in community councils and United Funds or in certain places in local welfare departments—of people who have not even begun to understand the over-all problem of mental retardation. As you know, we cooperate with the United Funds that are willing to make adequate provision for the mentally retarded in their fundraising program, but we should not consider them as qualified to determine our policies and to hold back our programs for the retarded.

Are We Retarding

the Retarded?

25

T h e refusal of some united funds and community chests to support our state and national association is becoming a more serious problem month by month, but we must in fairness acknowledge that within our own membership there are units so parochial-minded that they can think only of the children in their own community. T h e state association seems to them to be far away and the national even farther. Yet it would not take much effort to show that it would be in the best of interest of their children for us actually to support mental retardation activities in foreign countries as well. Phenylketonuria was discovered in Norway, the phenylketonuria diet in England by an English-German team, the new chromosome discovery in Mongolism took place in England and France simultaneously, and just now the National Institute of Neurological Diseases and Blindness reports further important advances in Mongolism research from Australia. It is just and fitting that we pause here today to acknowledge our lasting indebtedness to the pioneers of our movement, to those early leaders who set for themselves such high and far-sighted goals. But we should be mindful that we can do them no greater honor than if we depart from this tenth anniversary convention with renewed vigor and steadfast determination to pursue these goals. T h e path is clearly marked for us; we cannot afford to lag behind.

II. The Family and the Formative Years

3

Early Childhood Education Is Essential to Handicapped Children CUNNAR

DYBWAD

AND

EDWARD

LACROSSE

One of the most significant recent documents for anyone interested in children is the Report of the President's Panel on Mental Retardation. It offers " A Proposed Program for National Action to Combat Mental Retardation" that has significance way beyond this particular problem because it points up shortcomings and lags in services applicable to all childhood disabilities. T h e Report minces no words. Far from having achieved eminence in the field of child health and protection we have made little progress, particularly when it comes to those of our children who represent the greatest risks. T h e Report does not stress just the ethical and humane responsibilities of society that are being flouted, but points tangibly to the costs that accrue to a nation neglecting to remedy and alleviate the problem of its handicapped children. T h e current official estimates state that about 12 percent of the children in our school population are disabled to such a degree that they need some special assistance. T h e breakdown most commonly in use is as follows: Visually Handicapped .2% Crippled 1.5 Special Health Problems 1.5 Deaf and Hard of Hearing 2.0 Speech Handicapped 2.0 Socially Maladjusted 2.0 Mentally Retarded 3.0 Total 12.2%

3°

Family and Formative

Years

Translated into acutal figures, this means that some 5V2 million American children between the ages of 5 to 17 are handicapped. With present birth rates we can expect, in 1963, that more than half a million children will be born in the United States who will require, either permanently or at some stage of their development, remedial and ameliorative services to overcome handicapping conditions. A look at forecasts of population growth will show that these figures will increase substantially year by year. It must be stressed that we do not have adequate authoritative statistics available. Our statistics, largely based on information from school census figures, will not adequately reflect the large number of children who require remedial treatment and care at an early age. Furthermore, it is obvious that one will have trouble counting what one cannot adequately define. We lack the knowledge, skill, and practical diagnostic procedures for an adequate base for an enumeration of children with handicaps. T h e handicapped are those individuals who because of disability are unable to function or are limited in their functioning in society. T h e degree of handicap is not necessarily dependent upon the extent of the disability. Some people with rather serious disabilities make extremely good adjustments, while others with rather slight disabilities are seriously handicapped. There is another limitation to the use of the figures on exceptional children. Seldom does a disability exist by itself, uncomplicated by one or more others. When we count the individuals, how do we count the emotionally disturbed retarded child? Is he pseudo-retarded, or is he retarded because of emotional disturbance, or is he mentally retarded with an overlay of emotional disturbance? When tin individual with a severe disability cannot walk, see, or talk, what does this do to his emotional, social, and intellectual development? If he has a cosmetic problem, how does the reaction of people around him affect his development? These are important factors to keep in mind when we begin to look at the handicapping effects of various disabilities. We may discover the socially maladjusted child in the training

Early Childhood

Education

31

school for young delinquent children engaging in antisocial behavior as a result of a medical disability that has imposed a handicap on him. Going to the root of the matter, we find that the medical condition is the primary problem; the social maladjustment is a secondary consequence. Yet, from the way the community and society at large look at such matters, the maladjusted behavior is viewed as the primary problem, qualified by our knowledge of the antecedent medical condition (if indeed such knowledge is available).

More Than One Disability Of particular significance to the nursery school educator is the presence of several slight disabilities, some hardly noticeable to any but the eye of the specialist, which together constitute a handicap that merits serious consideration. Perhaps such a child cannot hear too well, has a slight visual distortion, and poor tactile sense. These conditions ordinarily might go unnoticed and none by themselves would make too much difference in the child's total adjustment, but taken collectively they have a very serious detrimental effect, more so than another child's far more pronounced but unilateral disability. One other aspect of multiple handicaps can work to the great detriment of the afflicted child: consciously or unconsciously it may make quite a difference for the nursery school teacher if a child is introduced to her as retarded blind or blind retarded. Furthermore, as she seeks auxiliary service for him in the community, she may well find that it makes a great deal of difference whether the one or the other designation is being used. A child may be introduced to the teacher as brain-injured, as cerebral palsied, or as mentally retarded, and each of these terms may evoke quite a different reaction in terms of the teacher's sense of her own competence and in terms of her readiness to accept such an individual.

Role of the Nursery

School

T h e nursery school teacher, working with handicapped children, may function in rather special settings. Children with severe phys-

32

Family

and

Formative

Years

ical involvement may require a nursery school program as part of a hospital regime; with other children it may be part of the residential care program in an institutional setting. A group day care program may have as one of its components a nursery school session. T h e n again, the nursery school teacher may have just a few physically or mentally handicapped children in a nursery school where the rest of the children are not handicapped. (It is most encouraging that more and more nursery schools have recognized that in performing a valuable service to the handicapped child, they are enriching in a very meaningful way the range of social experiences for the nonhandicapped children.) Many specialized nursery school programs are limited to children afflicted with a particular handicap. This may be part of the admission criteria or simply a result of the isolationist attitude of the community toward such children. More recently, with a lessened preoccupation on specific disa bilities and a greater understanding of the common problems facing handicapped children, an increasing number of nursery schools are serving a variety of exceptionalities. Overall an awareness is growing in the United States of the many ways the nursery school can and does serve handicapped children. Problem Areas in the Nursery School T h e first area of service pertains to the diagnostic problems. When a child is brought to the nursery school, attention is focused on his ability to function in a group situation with its constantly new experimental situations, created, not just by the t c a c h c r , b u t b y t h e ever varying interaction of the children. In his

own home, the child's inability or unwillingness to achieve a particular task may have gone unnoticed, or have been only passively noticed because demands were not placed upon him in terms of situations that would have exposed his underlying disability. Comparison with Other Children A parent, seeing the child function largely by himself, may be unaware that he is avoiding certain types of activities, or certain

Early Childhood

Education

33

movements. In familiar surroundings his limited vision or hearing may go unnoticed. In the nursery group, comparison with other children or established norms of behavior may raise questions about the child's performance that may suggest referral for clinical evaluation or furnish important clues to the clinician studying the child. It merits underlining that it is not suggested here that the nursery teacher should act as the diagnostician or amateur clinician. Her role is that of skilled observer. When it comes to group contact she might well make observations that would escape a clinician whose contacts have been limited largely to a one-to-one occasional relationship. T h e quality of the anecdotal records kept by the teacher will have particular importance here. A problem area concerning the very young handicapped child which the nursery school often is able to meet more successfully than the home is his inability to explain that he has a problem in the first place. He does not have the normal functioning with which to compare his abilities, such as an older person who has suffered an injury resulting in a handicap would have. When the handicapped child views the world in distortion he does not know that his view is distorted, and unless the parent is particularly perceptive, this may not be observed, or if casually observed the degree of distortion may not be fully appreciated. In the nursery school a planned effort is made to ask him to replicate what he sees, hears, or feels, and as he does so his distortions become obvious in comparison with other children. T h i s allows for observations leading to an evaluation far richer and more useful than the home observations alone. Often a differential diagnosis and referral for correction is made possible because of the astute observation of a nursery teacher. A young girl attended a preschool program for mentally retarded children. She was referred as being mentally retarded, emotionally disturbed, with organic brain damage. T h e teacher observed that her apparent disorganized behavior seemed to follow a definite pattern. In the classroom she constantly ran to the opposite side

34

Family

and

Formative

Years

of the room with apparent eagerness, but always seemed to bump into things there and, after a moment, rapidly repeated the process in the opposite direction. It seemed to the teacher that the child behaved as if she could see clearly at a distance, but was confused by what was close to her. Referral to an ophthalmologist was suggested and a visual distortion was discovered. Once this was alleviated, the child's "obnoxious" behavior ceased. She could fully participate in the regular nursery school activities and moved on to elementary school where she is doing satisfactory work. Tests for the Handicapped T h e nursery school performs a particular service in the area of diagnosis relating to testing. Standardized tests of course are part of the work with handicapped children but they are less satisfactory with them than with the average child. T h e testing situation usually accentuates the child's disability and may do so to a disproportionate degree. This may be inherent either in the substance of the test or in the prescribed manner of its administration. Anyone acquainted with handicapped children can cite many situations where a child was totally unable to function in a normal testing situation or did so very poorly, yet seemed to do fairly well in a less formal setting. T h e explanation may be that the more flexible "clinical" observation in the nursery school may accentuate, or at least may not suppress, the child's abilities and provide opportunity for him to demonstrate compensatory mechanisms he may have developed. Here again it is not the disability itself that is i m p o r t a n t so m u c h as what t h e child does about it

or in spite of it. The Nursery School Renders Help to Parents Parallel to the nursery school's contribution to the professional clinical evaluation of the handicapped child goes the assistance it renders to the parent in arriving at a more realistic assessment of the degree of the child's disability and of the ensuing handicap. Pediatricians have long recognized that their task in interpreting to a parent the severity of a child's condition and the degree of

Early Childhood

Education

35

the consequent deviation from normal patterns of physical growth and behavior is made much easier if they encourage the parent to describe the child and his performance and achievements at length. Often the parent is able to volunteer that perhaps the child is "different" or retarded or severely physically handicapped. Helpful as this procedure is in many cases, infinitely more advantage will accrue if the parent can observe the child in the setting of the nursery school against the background of a group of children participating in a structured program. Part of the advantage, of course, rests in the fact that a mother can be an observer more easily if she is not part of the setting. With proper guidance from the teacher, the parent can gain a better understanding of her child's functional limitations and a greater appreciation of some of his assets and the potential for compensatory patterns. Frequently observing the child in the nursery school setting may help the parent to seek correction of the child's disability since such a step will hardly be pursued until the parent is actually reconciled to the existence of the disability and more specifically of the resulting handicap and will no longer try to shield herself from this by denial. In the specific area of the parent-child relationship, the child's behavior and often the parents' comments can provide important clues. Dr. Leo Kanner on several occasions vividly described the devastating effects on a child of a home situation where, far from any neglect, the child's disability is so much the center of attention (what with special diet, medications, special exercises, visits to clinics) that the child may come to feel his disabilty as more important than he as a person. T h e nursery school may then be the only haven where the child can be himself. T h i s is particularly the case when the presence of other nonhandicapped siblings in the family impresses on the child the "being different" the handicap imposes. Even when such gross maladjustment does exist, separation for part of the day can lead the mother and the child to an appreciation of each other's role. While this is a concomitant of all nursery

36

Family

and Formative

Years

education, it is of special significance when the child's handicap is apt to be a disturbing factor in the parent-child relationship. T h i s enumeration of the nursery school's potential contribution to the diagnostic process of handicapped children may well evoke a plaintive query from the teacher: " I f I have to do all of this, when will I find time to teach?" T h e point of course is that (aside from certain nursery schools which are functional parts of a diagnostic clinic) the value of the nursery school teacher in this context rests on her observations and reactions as a teacher. Her observations are made in the course of directing and observing the daily program.

Nursery School Helps the Child Toward Social

Conformities

Contributions to the diagnostic process are not the only particular assets of the nursery school for handicapped children. Another advantage lies in the area of timing. W e live in a society exceedingly receptive and tolerant of very young children. T h e very young child of nursery school age is still allowed to be different, but as he moves up the chronological age range the demands for conformity become more and more stringent. T h e handicapped child who has the advantage of a nursery school education can learn the lessons of socialization before the frustrations in his relations with his contemporaries have become acute. In the protective yet stimulating and challenging environment of the nursery school the child can learn to conform to the many social demands he will face eventually in his motor, social, and intellectual behavior. At a time when he has not yet been subjected to the pressures of society's demands for conformity in appearance as well as in performance, he can learn in a realistic, accepting, though challenging environment to recognize the extent of his handicap and to get on with others within his own limitations. Some of the foregoing comments have stressed certain environmental differences between the home and the nursery school. Compared with the experiences awaiting the child in elementary school and in other community settings, the nursery school is, of course, closer to home, less demanding, and much better able to

Early

Childhood

Education

37

allow the child to explore. Little by little he gets used to the demands he will have to face later. T h e r e is another facet to the propitious timing of the nursery school experience in the handicapped child's life. Even with a disability that does not progress, the effects may increase at a geometrical rate as the child grows older unless ameliorating, balancing, or compensatory mechanisms are brought into play early. A chain of events can all too often be observed: Because the child has a disability, his family (and later the community) tends to protect and isolate him. Fear that the child may overexert himself physically or get into situations where his sensory or intellectual limitations may engender danger leads the parent to impose excessive restrictions on the handicapped child's play activities, his moving about, or his associations with playmates. As a result the child has less opportunity than have other children to gain experiences. Nor will he be able to utilize the experiences allowed him to the degree that a nondisabled child will. If his visual or auditory defect decreases communication with his environment, he will be deprived of important environmental stimuli usually taken for granted with the average child. Without the helpful intervention of a nursery school experience the spastic child may become more and more withdrawn. As his spasticity keeps him from making social contacts on his own, he will increasingly doubt his ability to make such contacts. As a consequence he will avoid them more and more, so that by the time he reaches elementary school, the social manifestations of his disability may outweigh the original physical problem. Herein lies an important point for the nursery school teacher who is fearful of becoming involved with physically handicapped children lest she be unable to cope with problems outside her ken. T h e help these children need from her lies in an area where she has particular competence.

Close Cooperation Between Parent and Nursery School

Important

Another distinct example of nursery education of the handicapped child pertains to the involvement of the parent. A good

3»

Family

and Formative

Years

program of parent education enriched by guided parent participation can have an unusually salutary effect on the home situation. In terms of parent education, there is the need for the family to gain an understanding of the child's handicap and the special needs the family must be prepared to meet. At the same time the parents often may fail to understand that, the handicap notwithstanding, the child has the same basic needs as other children. Naturally, the family physician and the clinic will have given the parents some help. But the nursery school can relate this more readily to practical problems of child management of concern to the parent. It is not uncommon for a parent, in good faith, to assure the physician or the clinic that the child is not able to perform a given task. Guided observation in the nursery school gives the parents a chance to see with their own eyes how differently the child can act once removed from the protective, unwittingly restrictive home situation. By observing the interplay of the child with other children and the nursery teacher they also get an object lesson on how this is brought about. Moving on from guided observation to guided participation, parents may have a chance to work with another child who has the same disability but without the emotional involvement inevitably a part of working with their own child. A nursery school providing such learning opportunities for the parents will contribute substantially to an improved home situation, particularly in the area of independence between parent and child. T h e child with a severe disability is of necessity more dependent upon the mother to assist him with the activities of everyday life than is a normal child. Frequently matters get stagnated at this point, whether due to the mother's emotional need to keep ministering to her "poor baby" or whether other household duties keep her from taking the time to train her child toward gradually assuming a greater measure of self-reliance. T h e nursery school can afford to let Jimmy take twenty minutes to remove his cap, his coat, and his overshoes, but once he has learned to manage this within a reasonable time span the newly gained skill can be applied at home.

Early

Childhood

Education

39

T o be sure, there may be complications arising in the relationship between the mother and the nursery teacher. T h e child's advances in the nursery school, his increased ability to handle himself in spite of his handicap, may well be threatening to some parents who previously had reconciled themselves to having a lifelong cripple in the home. T h e nursery school teacher may greet enthusiastically the child's newly won advance toward greater social competence whereas the very same observation may evoke, in the parent, great fears of what will happen when the child—a decade hence—gets ready for dating. Parent-Teacher Communication Obviously this underlines the belief that with handicapped children, continuing close communication between the parent and the nursery school is of particular importance. T h e nursery teacher should not be expected to carry the total load of the counsel and guidance needed by parents of handicapped children. Reference has been made to the physician and to the diagnostic clinic. Perhaps the nursery school teacher's most valuable ally in her work with handicapped children will be the public health nurse who functions both in the school setting and in the home setting. She can bring to the teacher some insights from the child's home situation and, vice versa, profit in her work with the family and specifically the child from what she can observe during the daily activities at the nursery school. With many handicapped children the area of feeding is a particular problem and the public health nurse can coordinate the approach to this problem between home and nursery school. A strange resistance exists in some parts of the country to the professional competence of the public health nurse and the great contribution she can make to families in the area of child management. It might even be said that some nursery educators are prejudiced against public health nursing, occasioned perhaps by instances when compliance with health department regulations made little sense to the educator. T h e time is long overdue for these two professional groups to develop a better understanding of each other's services and a

4°

Family

and Formative

Years

greater readiness to work out cooperative relationships. T h e nursery teacher may render a distinct service to the family by telling them about the availability of services rendered by the public health nurse. In turn, particularly in the area of work with handicapped children, the public health nurse, who relates to many agencies and organizations in the community, can interpret widely—hopefully on the basis of her own observation, if not participation—the knowledge that Early Childhood Education Is Essential to Handicapped Children.

Reprinted by permission of the National Association for Nursery Education from the Journal of Nursery Education, January, 1963.

4

Group Approaches in Working with Parents of the Retarded: An Overview Presented at the Eighty-sixth Annual Meeting of the American Association on Mental Deficiency, May 4, 1962 A survey of the available literature and of the services now in existence reveals that group programs are being offered to parents under a rather wide variety of names of which the following are most frequently encountered: group therapy; group counseling; education counseling; parent education; parent seminars; parent group training; parent group information. While it is true that these services are offered so far only sporadically and by no means in any measure commensurate with the extent of the problem of mental retardation 1 actually a great deal is being done now and a considerable amount of material is available in the professional literature. The wide variety in the sponsorship of existing programs makes an exhaustive study quite impractical if not impossible, but a quick overview will give us a qualitatively, if not a quantitatively, representative picture. Quite a few of the mental retardation clinics that have developed over the past decade or so are offering group programs. T h e following quotations will provide some indication of what is offered: Group counseling sessions provide an opportunity for parents with similar problems to achieve insight and help as they get together and talk over their questions and problems with a qualified psychiatrist. 1

William Gardner and Herschel W. Nisonger, A Manual on Program Development in Mental Retardation, Monograph Supplement to the American Journal of Mental Deficiency, January, 196z, p. »6.

Family

42

and

Formative

Years

Or: Counseling may be offered parents during or following the diagnostic study. T h i s may be on an individual basis or a group basis, may involve help with specific problems in dealing with a child, or may involve assistance in improving the general climate in the home in order that the child may function more effectively. G r o u p therapy approach is an effort to help the parents achieve better understanding of themselves and their children. Mothers are seen in a group under the direction of the psychologist or social worker under clinic staff. A n o t h e r clinic states: O u r goal was not to attempt to bring about any significant changes in personality problems but to help the parents feel more comfortable and to be more realistic and effective in their dealings with the child. A n o t h e r clinic which places considerable emphasis on counseling parents of r e t a r d e d children both

individually a n d in

groups

states: In group counseling we are not concerned with intensive group therapy, but with casework counseling in groups. Goals are: personality reintegration and adjustment to reality. Group processes and teaching methods are combined to afford the individual relief from tension, understanding of children's behavior, and techniques for handling specific problems. 2 A family service agency in a large city provides "leadership of family life e d u c a t i o n g r o u p s , " and includes u n d e r that heading p r o g r a m s for parents of retarded children. A m e t r o p o l i t a n agency which serves severely mentally retarded children t h r o u g h a c o m b i n a t i o n of e d u c a t i o n a l a n d clinical programs offers an educational counseling p r o g r a m consisting of a series of fifteen lectures, followed by g r o u p t h e r a p y — a n interesting c o m b i n a t i o n . 3 A d u l t e d u c a t i o n p r o g r a m s under the auspices of public school ' Helen L. Beck, "Counseling Parents of Retarded Children," Children, November-December, 1959, p. 228. • T h e Institute for Retarded Children of the Shield of David, "Program for Preschool Trainable Retardates and Their Parents" (mimeographed N I M H Grant Report, 1958-61).

Group

Approaches

with

Parents

43

systems offer parent education group meetings, and a handbook published by the Bureau of Adult Education in the State of California has a special section dealing with such programs for parents of mentally retarded children. 4 In some cases extension divisions of state universities have included parent education programs in their schedules. T h e state board of health in an eastern state conducts parent education classes with a rather specific purpose: to give the parents a better understanding of their retarded children's speech problems. In some cases state institutions are conducting group meetings over a period of time, either to assist parents who are facing a long waiting time before their child can be admitted to the institution or else to achieve on the parents' part a better understanding of their children's needs and how the institution, now caring for the child, will meet these needs. In numerous instances all across the country, parent-sponsored Associations for Retarded Children are offering group programs. They range from group therapy sessions conducted by a psychiatrist 5 and group counseling sessions under the direction of social workers to informal discussion meetings conducted by parents for parents and lecture meetings. In one case, a state Association for Retarded Children organized on a demonstration basis parent seminars on a state-wide pattern—two in large urban centers and one in a rural county.® Another state association organized in one of the Great Plains states intensive one-day institutes with a structured agenda of lectures and group discussion. This hasty enumeration will serve to give an indication of the many different programs which are in existence in such a wide variety of agency settings. If one considers further that there is no consensus as to what constitutes appropriate subject matter for * Milton Babitz, Parent Education—Curriculums, Methods and Materials (Sacramento, Calif.: State Department of Education, May, 1961), pp. 69-73. ' W. J. Gadpaille, M.D., "Parents Group Pilot Project" (Unpublished mimeographed report, Denver, 1959). •Warren C. Bauer and Ann Switzer, Adjustment of the Retarded—a Research and Demonstration Project (Connecticut Association for Retarded Children, .962).

44

Family

and

Formative

Years

discussion, that there is no agreement as to what disciplines should handle such programs, what special preparation, if indeed any, should be required, and what type of groupings is appropriate as far as the the participants are concerned, then it stands to reason that one is hard put to discern any clear over-all lines which would allow even a fairly rough delineation of one type of program from another. In order to arrive at any kind of over-all picture, we shall have to look at the c o m p o n e n t parts, specifically the areas from which the subject matter was drawn, the selection and g r o u p i n g of participants, the methodology used, and the patterns of staffing and training of staff. A s one reviews the approach to the content of such groups, either as described in the literature of the past ten years, or as available f r o m unpublished materials in the files, it becomes fairly evident that change is taking place. Earlier material centered very heavily on what were considered the overwhelming guilt feelings of parents of retarded children and on what was seen as a deep-seated and fairly acute state of disturbance as a result of the traumatic experience of having a retarded child. In a chapter, " G u i d e s for Parents," which she contributed in 1959 to the volume The Child with a Handicap: A Team Approach to His Care and Guidance" 7 Dr. Elizabeth Boggs pointed out that much has been written about the "guilt feelings" of the parents of the handicapped child. What are sometimes called guilt feelings may in reality be a form of grief. Grief is a normal and appropriate human emotion whose suppression is unhealthy. Parents of a handicapped child must live with their continuing form of grief. As an individual he should be assisted by the knowledge that his emotions are respected. It is interesting that in two successive issues of the journal Social Casework, published in 1962, two a u t h o r s — o n e a social worker, the other a social scientist—picked up and developed further this important theme. ' E d g a r E. M a r t m e r , ed., The Child C. T h o m a s , P u b l i s h e r , 1959), p. 355.

with a Handicap

(Springfield, 111.: Charles

Group

Approaches

with

Parents

45

The caseworker should be careful to guard against viewing the initial grief reaction as the parents' inability to accept the handicapped. As with any injury, there deals a narcissistic blow. It takes time for parents to adapt themselves to this painful reality. T h e best way to help them is to understand and recognize their need for a period of adjustment during which they can absorb the shock.8 In an article entitled "Chronic Sorrow: A Response to Having a Mentally Defective Child," Simon Olshansky proposes: Most parents who have a mentally retarded child suffer from a pervasive psychological reaction, chronic sorrow, which has not always been recognized by the professional personnel—physicians, psychologists, and social workers—who attempt to help them. . . . The helping professions have somewhat belabored the tendency of the parent to deny the reality of his child's mental deficiency. Few workers have reported what is probably a more frequent occurrence, the parent's tendency to deny his chronic sorrow. This tendency is often reinforced by the professional helpers' habit of viewing chronic sorrow as a neurotic manifestation rather than as a natural and understandable response to a tragic fact. All the parental reactions reported in the literature, such as guilt, shame, and anger, may well be intertwined with chronic sorrow.® A second shift I have discerned in this present view has been a move away from overemphasis on the diagnostic process and in particular on the postdiagnostic period d u r i n g which continued interpretation and reinterpretation to the parent of the diagnostic findings was considered a very important point to be followed. It would appear that there is now more of a realization as to the limited value of the diagnosis as available today so far as the child's future performance is concerned. W h i l e it is of course true that most parents ask with a great sense of urgency " W h a t happened?" it would appear that in our own need to identify causative factors, w e tended in the past to accentuate that particular question of the parent as against a more fruitful one: " W h a t can I expect from him and what can I do for him?" • P a u l i n e C . Cohen, " T h e Impact of the Handicapped C h i l d on the Family," Social Casework, X L I I I , No. 3 (March, 1962), 138. •Simon Olshansky, "Chronic Sorrow: A Response to Having a Mentally Defective Child," Social Casework, X L I I I , No. 4 (April, 196«), 190-91.

46

Family

and Formative

Years

In other words, in mental retardation, the clinical diagnosis in early childhood, essential as it is, often provides very little meaningful guidance for the parent who is anxious to know what level of performance he might expect from the child. There is a third area that should be mentioned here: What once was considered most unrealistic striving by the parent or even considered a symptom of his neurotic nonacceptance of the inevitable limitations of his retarded child, now comes to the fore in an increasing measure as quite feasible expectations. What is suggested here is that one can see a shift in the content of the group discussions—not just because shifts in community attitudes and other vital factors have given the parent a better capacity to deal with this problem, but because the group leader, too, has gained a different, more positive, and more hopeful outlook on mental retardation which is reflected in his work with the group. A recent report on " T h e Development of a Group Counseling Program in a Clinic for Retarded Children" states: "There is much intact health and ego in these mothers and while they have some anxieties in common, they do not all handle identical situations with the same kind of 'illogical' reactions." 10 Aside of course from those lecture courses or lecture discussion meetings where a topic selected in advance sets the framework for each meeting, in most cases the specific topics for discussion are now selected by the group as they move on from meeting to meeting. The parents were encouraged to bring up and pursue whatever subjects were of paramount interest to them. They understood there would be no fixed curriculum. In the opening session, the leader asked the group members what they wished to discuss and a tentative agenda was drawn up. The original list of topics was referred to from time to time by the members or the leader, and it was used flexibly, as a reminder of initial interest, rather than as a fixed outline. Topics for discussion were selected by the members from meeting to meeting. Therefore, at each session, the members and the leader faced the " L Goodman and R . Rothman, American No. 6 (May, 1961), 793.

Journal

of Mental

Deficiency,

LXV,

Group

Approaches

with

Parents

47

task of selecting areas for discussion that were both of immediate and general concern.11 T h e following is a selected list of topics considered by a group of parents of retarded children during the course of a ten-session group counseling project. 12 1. T h e meaning of the retarded child to his siblings, his effect on them, their acceptance of him, etc. 2. T h e services offered by the institution, both positive and negative values. 3. T h e question of placement, its value to the child and its meanings; the meanings to the parents. 4. Problems of discipline for the retarded child and the other children in the family. 5. T h e future care of the retarded child and the responsibilities of the institution, the parents, the siblings. 6. Legal and financial questions about the future care of the retarded child. 7. Difficulties of accepting the diagnosis and term "the retarded child." 8. Some of the emotional meanings to parents of having a retarded child. 9. T h e shortcomings of professional help which is available. 10. Some of the various meanings to parents of joining an association for retarded children. 11. T h e retarded child and religious meanings. 12. T h e values and expectations of a group process for parents. Moving from the area of content to that of selection (groupings) of participants it is again hard to discern any one dominant pattern. Some leaders seem to feel that as long as the group process does not involve deep therapy the choice of participants requires only a relatively superficial screening (to eliminate the obviously disturbed for whom the group experience would be too traumatic u Salvatore Ambrosino, " A Project in G r o u p Education with Parents of Retarded Children," Casework Papers, i960 (New York: Family Service Association of America, i960), p. 97. " T h e author is indebted for this information to A r t h u r Mandelbaum of T o peka, Kansas.

48

Family and Formative

Years

and who in turn might tend to disrupt the developing group process). Other leaders feel that a careful screening interview is very important because it serves also the purpose of preparing the parent for the experience he may expect as a member of the group. W h i l e some leaders feel that having a " m i x e d " group representing a variety of handicaps is a distinct advantage in that parents might tend to get a more balanced view of the child's handicap if they see the problems encountered in another family burdened by a different disability, there is good reason to approach mixed groups with some caution: Other variations in group movement are found in groups composed of parents of children with different disabilities or children who have a similar disability but a wide range of impairment. The basis for these parents coming together is that they share the common experience of having a handicapped child but differences in the nature or degree of the child's handicap may set each family off in a separate category. Even in groups built around a common label, such as mental retardation or orthopedic handicaps, parents often become preoccupied with the fact that their child is much more (or less) disabled than the children of the other group members. Whether they are deeply envious of the other parents or relieved at their own favorable situation, their awareness of the differences makes it hard for them to see and share their common problems and so to learn from one another. These groups too work at a slower pace and require unusually sensitive leadership. 13 Bernard L . W h i t e called attention to the fact that thought needs to be given when it is planned to have both parents attend the same group. We are now encouraging both parents to participate. Those who have reported that they tended to be more consistent in their treatment of the child and gained a greater understanding of their partner's role and feelings. However, if both parents are to be included more stringent selection would seem to be indicated. Basically secure, compatible marital situations seem to be enhanced by an experience of this sort; those of a doubtful nature would be expected to gain less U A . B. Auerbach, "Group Education for Parents of the Handicapped," July-August, 1961, p. 139.

Children,

Group

Approaches

with Parents

49

and might possibly be harmed. In any event, the group session should not be a battleground for familial differences, with the leader and other participants cast in the role of referees.14 One further point needs to be stressed in discussing methods of selection of participants in parent group efforts. T h e parents who have participated in the therapy groups, group counseling, and group education projects referred to in this text or described elsewhere in the literature have largely, if not exclusively, been parents of retarded children whose mental defect was related to causative factors in the biological area and usually was accompanied by physical debilities of one kind or another. If we were to extend this program broadly to families where the mental retardation problem is related to cultural, economic, and social causes, we might likely encounter serious problems in communication between the kind of group leader we are now furnishing and the parents coming from a socially, economically, and culturally deprived situation. 15 T u r n i n g now to methodological considerations, one is confronted with an obvious confusion regarding the term "group therapy." References to it in the literature and in announcements and reports of programs indicate that only rarely is there a clear conceptualization as to how a program announced as "therapy" would differ from an educational approach. This can most likely be related to a lack of clarity in the setting of goals for such programs. 16 One (unpublished) report of a series of ten sessions conducted by a psychiatrist contains these statements: "Since the exploration of hidden feelings and thoughts and the deepening of one's self-awareness are psychotherapeutic goals, the pilot project was undertaken frankly as therapy and a psychiatrist experienced in " Bernard L. White, "Group Counseling with Parents of Retarded Children." Unpublished paper presented at the 1958 convention of the American Psychological Association. " A . Gram, Parent Education and the Behavioral Sciences (Washington, D.C.: U.S. Children's Bureau Publication, 1960), p. 20. M Gunnar Dybwad and Gertrude Goller, "Goals and Techniques of Parent Education," Casework Papers, 1955 (New York: Family Service Association of America, >955). PP· 1 3^-4i·

5°

Family

and Formative

Years

group therapy was utilized as group leader." And then: "Deepseated emotional conflicts relatively unrelated to the immediate problem of retardation were carefully avoided by the therapist. It was not expected that any major changes in attitude would be accomplished in so short a time." Again: "These people did not gather together into a group for psychotherapy because of any realization of emotional conflict within themselves." James C. Coleman, in his article "Group Therapy with Parents of Mentally Deficient Children," 17 states in reporting on a group therapy project: "In a sense the interaction was maintained on a relatively surface level since the group discussion was restricted to parent-child relations and did not take up various personal problems in other life areas." Also, " T h e term 'group therapy' was not used and no attempt was made to structure the situation as therapy in any form." A succinct statement as to the difference between parent group education and group therapy is given by Aline Auerbach: In parent group education, the goal of the leader is to help group members explore all aspects of the situation in which they find themselves with their children, to gain greater knowledge and understanding of their children's physical and emotional development, of their own role as parents, and of the complexity of parent-child relationships. They do this through exchange of ideas and experiences within the group interplay, looking at both facts and feelings—theirs and their children's. Sharing their reactions with others under skillful leadership seems to free parents to move on to new attitudes and new behavior, or to have greater confidence in what they are already doing. The goals and techniques of group education are different from those of group therapy. The group education leader does not focus on the pathology of the members, or probe into the unconscious. Although he must take into account the unconscious factors that influence behavior, he deliberately directs group thinking toward aspects of ego functioning in order to develop ego strengths.18 In spite of the lack of clarification in the use of the two terms, there was at least universal recognition that group therapy was " I n Counseling and Psychotherapy with the Mentally Retarded, edited by Chalmers L. Stacey and Manfred F. DeMartino (Glencoe, 111.: T h e Free Press, 1957). u Aline B. Auerbach, "Group Education for Parents of the Handicapped," Children, July-August, 1961, pp. 135-36.

Group

Approaches

with

Parents

51

somehow going more into depth. T h e term "counseling," however, seems to be used with almost any connotation—from a specific treatment approach to instructional guidance. T h e urgent need for clarification of these various terms and the approaches they do (or should) represent becomes obvious when we approach the problem of training leaders for these various programs. In our present review, we found in both the published material and the unpublished reports universal agreement about the very definite value of group approaches in helping parents of handicapped children. This obviously suggests a broad application and this in turn necessitates preparation of appropriate leadership. One outstanding example of such training is the Program of Training of Professional Workers for Parent Group Education of Parents of Handicapped Children developed over the past several years by the Child Study Association in America, the oldest organization in the field. Their experience extends to social workers, educators, psychologists, and public health nurses 19 and has included specifically work with groups of parents of retarded children. T h i s is not to say that only professional workers can make a contribution to the programs here under discussion. In her article " T h e Impact of the Handicapped Child on the Family," Pauline Cohen stresses the point that parents of retarded children, because of their own experiences, can be particularly effective in helping other parents work through their grief, and indeed carefully selected parents have been used for such programs. But certainly this would imply a carefully delineated approach, in clear distinction to the type of programs which can be undertaken by the professional worker. Altogether it seems abundantly clear that there is an urgent need for systematic efforts along three lines: 1. Conceptualization of the various group approaches to parents of handicapped (and particularly mentally retarded) children "Sec, e.g., A. B. Auerbach, "How Do Nurse* Take to 'New Way»' in Leading Parent Groups?" Nursing Outlook, Vol. VI (December, 1958).

Family and Formative

Years

Clearer recognition of the types of training appropriate for these different group programs Development of program-oriented research to test the effectiveness of these programs.

5

Present-Day Concepts of Family Life and Parent-Child Relationships Presented at the First Plenary Session of the World Child Welfare Congress in Brussels on July 21, 1958 There is indeed ample reason for reassessment of present-day concepts of the family because this venerable institution has become the subject of much controversy. Certain extremists in the sociological field have long written it off as a doomed and dying institution, while by many others it is considered the bulwark around which human existence can forever reorient itself for new tasks and challenges. Many present-day writers can find only fault with the family and scold it for having lost sight of its past virtues, while others praise it as the most versatile and flexible, resourceful and tenacious element in human history. In order to present a more specific framework m which to assess the vast subject of family life, I shall concentrate on the effects of industrialization and urbanization, first on the family as an institution, then on its members, and finally on its supporting services. T w o years ago the Eighth International Conference of Social Work devoted its entire time to a consideration of industrialization. Perhaps the broadest and most significant finding of that international gathering was the realization that industrialization was moving ahead steadily and relentlessly, leaving no part of the globe untouched, penetrating slowly but steadily every country. T o be sure, the processes set in motion by it, particularly those on the social and cultural scene, proceed at a very uneven pace. Margaret Mead in her recent restudy of the Manus in the South Sea Islands has given us an example of an almost unbelievably

54

Family and Formative

Years

rapid pace of progress, while each one of us knows of examples to the contrary, countries where despite an early start and ample resources, the advancement has been surprisingly slow. This brings us to a caution which will have to be expressed in similar fashion at other points in this presentation, namely, that while we are dealing with a world-wide development, we must be careful not to apply specific knowledge, experience, and planning gained in one country to another, without first ascertaining whether they can be transferred at all, and if so, with what changes and readjustments. Wherever industrialization develops, it inevitably deeply influences existing family life. For one thing, it rearranges timehonored work-processes: what was once hard labor requiring the efforts of several men becomes an easy operation that often even a child can handle. What once had to be gotten far away from the home, now is available in the home. Yet also, conversely, work that formerly was done in the home now is performed a long distance away. In many instances these changes have brought about an immediate disadvantage to family life, such as the introduction of family sweatshops, of which there have been some recent new examples when inadequate supply of machines required the family to work in shifts around the clock. There are also, of course, negative effects on the social and cultural functions of the family, often necessitating separation of the group. However, the factor of greatest consequence to the family is the urbanization which invariably follows industrialization. How world-wide in scope the problem of urban planning has become was brought out at a United Nations Conference in 1957 on the Mental Health Aspects of Urbanization in Asia, Africa, and Latin America, sponsored by the World Federation of Mental Health. In opening the Conference the Deputy Director General of the United Nations Technical Assistance Administration noted a sequence of "industrialization—urbanization—mental health problems," and in the subsequent discussions it was brought out that these mental health problems largely related to the family and its functioning in a new social situation. For one thing, Julia Hender-

Concepts

of Family

Life

55

son, Director of the Bureau of Social Affairs of the United Nations, emphasized that a very frequent, though not universal, aspect of urbanization was the disappearance of the large extended family in favor of the small nuclear family of parents and children. This small nuclear family is more dependent on outside help than the large extended family group with its greater human and economic resources. It is more vulnerable to incidents of strain and stress, and in general lacks the framework for close relation between generations. This change from the extended to the nuclear family has accentuated the world-wide housing shortage. The "Report on the World Social Situation" published by the United Nations in 1957 points up sharply to what extent this housing shortage interferes with the new trends in family structure and, for example, confuses children as to their relationships to the people with whom they are housed and the family proper of which they are a part. Of course, I realize that the word "urbanization" as such has as yet no universally accepted definition. First of all, there is no longer the clear-cut line of demarcation between urban and rural areas: we now see a development of suburban localities which more and more form independent entities, and we also have large developments in rural areas which have at least some distinct urban characteristics. Here again we must be aware that these developments proceed in various parts of the world with distinct differentiations, and yet it is the prediction of Kingsley Davis, a social scientist who has studied these international variations, that within four decades, one quarter of all the people in the world will live in cities of 100,000 or more. It is therefore significant and encouraging that we have on record reports from Thailand, China, India, Japan, and Africa indicating that it is possible to develop industrialization and urbanization in such a manner as to strengthen rather than weaken the family's functioning. Indeed, Eric Beecroft, Director of the Community Planning Association of Canada, sees in this the biggest and most significant democratic task of our time. The point to be made is that while industrialization and ur-

56

Family

and Formative

Years

banization are forces that move relentlessly ahead, it is up to people like us, assembled here at this Congress, to insist forcefully upon a channeling of these new forces that will safeguard essential cultural aspects of the peoples affected. This presupposes a realism that unfortunately is at times absent, particularly in persons interested in the welfare of children. Only recently, for instance, a Far Eastern child welfare organization stressed the necessity for maintaining the rural life and actually stated categorically that revitalization of ruralism was the only hope for coming generations. Such idealization of rural living and rural virtues is indeed no longer justifiable, since publications of the World Health Organization and of the World Federation of Mental Health have brought forth increasing evidence from underprivileged countries supporting what many Western countries already have learned: that lack of mental health is to be found in rural areas as much as elsewhere. An inevitable by-product of industrialization and urbanization is migration. Just as the last of the nomad peoples begin to develop permanent settlements, the rest of mankind seems bent on moving about in search of greater economic rewards. The most obvious disadvantage to the family is the "uprootedness," the danger of being "lost" in a new location, the separation from cultural traditions and their inherent moral support. But there is another disturbing phenomenon: the absentee father whose work takes him away either for weeks or months of actual separation, or, at the least, for such long hours that he becomes merely "an overnight boarder" in his own home. Naturally it must be said that in many parts of the world we have had some incidence of this for generations, but it has never been considered a constructive family experience, and certainly it is disquieting to observe the extent to which this becomes a more common experience. Julia Henderson rightly points out that in this regard we have to be concerned about the father's existence as much as that of the family he leaves behind: if the separation is one that extends over weeks and months then a new problem arises in terms of

Concepts of Family

Life

57

casual or continuing sexual relationships he may form at his place of work resulting in additional "family" responsibilities. Problems of migration affect all income groups. A recent report from India, for instance, indicates that mobility is particularly prevalent among the lower classes in their search for better jobs and wages, while the upper income groups tend to stay on the land they own. In the United States, on the other hand, in recent years it has been particularly the administrative and technical employee of the large corporation who has been required to move his family frequently from place to place in line with his company's wishes, and induced by promotion and salary increase. All the foregoing developments have brought to families feelings of confusion and insecurity. While originally this had been considered by various writers a problem peculiar to their own national scene, available reports from Europe, Asia, North and South America underline its universality. As old cultural patterns prove inadequate to modern needs; as migration brings families in contact with new customs and ways of life; as the greater flexibility of young people allows them to adjust themselves more speedily to new situations than their elders, parents are puzzled and often bewildered. Added to this are the problems created by advances in communications. The mass media—newspapers, picture journals, films, radio, and television—allow children to pick up quickly if somewhat superficially more general knowledge than former generations could gather in a lifetime. Perhaps the most decisive factor, however, is the sheer pace of progress today. Until a few decades ago, the ever-present changes of life proceeded slowly enough to permit a gradual transition from one generation to the next. Parents could form a fairly accurate picture of the circumstances under which their children would live and could guide them accordingly. Although even then there were already inventions which brought surprising innovations, the pace of that life simply cannot be likened to the age of electronics and atoms, jet planes and rockets. Today parents

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find increasing difficulties in adjusting to the fact that the younger generation often has knowledge, skills, and global orientations which they as parents do not adequately comprehend. Although parents are somehow aware of their age-old role as "bearers of cultural traditions," U N E S C O ' s report on "Education and Mental Health," published in 1955, points out that parents face a growing uncertainty as to how far they can impose their own standards on their children who are destined to live in a world the parents cannot visualize. Yet, confusion does not mean inaction, and the foregoing comments are not meant to imply, as has been the fashion in some countries, that parents have "abdicated" their responsibilities. T o the contrary, most parents still are as concerned as ever with their children's welfare, but they wonder how they can lead, when they sense so much their own need for direction. It should not be too surprising that this recognition has led in some instances to exaggerated exhortations to parents to exercise their prerogatives and to reinstitute patterns of family hierarchy and modes of family discipline that characterized the family of past years. In summary, then, it might be said that industrialization and urbanization are less threatening to the family as an institution than to the traditional structure within the family. In turning now to the effects of industrialization and urbanization on the family members, one must, of course, be mindful of the need for social policies to focus on serving and improving conditions of the family group as a whole rather than merely on individual family members. T h i s admonition, which was reiterated with emphasis by the eleventh session of the United Nations Social Commission in 1957, is particularly appropriate for us at this Congress, because it must be admitted that in the past some of us have focused too much on what we thought was helpful to the child and not enough on what was appropriate to the child as a member of his family. A s a matter of fact many of my colleagues would add that even this is not enough, and that we must

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also think in a larger dimension of the family's place in the community setting. Without in any way minimizing the importance of these considerations, it is, for the purposes of our discussions here, of even greater significance that we look at family structure in terms not only of the parent-child relationship but also of the husband-wife relationship; of the relationship between brothers and sisters; and in terms of the parent as an adult individual in his own right. This emphasis on the parent (and of course also the child) as a human being in his own right as well as a member of the family unit is particularly important in this day of mass movements, mass housing, mass media, mass employment, and mass education. A German report on the International Conference of Social Work in Munich described as one of the basic results of that meeting "the recognition that in all technical and economic progress, man must be the measure of all things, and the dignity of the individual must be safeguarded." It is the individual who can and must make the most important and most valuable contribution toward the improvement of social conditions. Perhaps one should mention here that this is not just a concept of the Western world; a recent article on social welfare planning in Pakistan, for instance, stated they were aiming at "making the growth of human relationships possible so as to bring out the latent powers of the individual." Indeed it may be said that as long as the process of urbanization is world-wide we should expect a widening emphasis on the individual, since one of the strange contradictions about urban development is that while on the one hand it submerges the individual and his family in a mass, it at the same time affords him a greater opportunity to establish social status away from the family. At this point it will be helpful to introduce in our discussion the concept of role, developed by the sociologists as representing the dynamic aspect of status. Each individual can be seen as holding a status to which are attached certain rights and duties. As he puts these into effect the individual performs his "role." It is in

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this area of role performance that considerable controversy exists regarding present-day concepts of family life and parent-child relationships. The focus of this controversy is the question as to whether recent developments have tended to "blur" the appropriate roles of the male and female members of the family, thus endangering the effectiveness of parent-child relationships by creating confusion in the mind of the child and of the parent as well. Last year the former Viennese psychoanalyst, Bruno Bettelheim, now head of the Orthogenic School in Chicago, developed this thesis with particular vehemence in an article entitled "Fathers Shouldn't Try to Be Mothers." The problem of course is: What does a father do and what does a mother do? For some people this is an altogether easy question: the father acts out and thereby interprets the role of a male; the mother, the role of the female. Yet this must of necessity provoke the further query: What is male and what is female? Many attempts have been made to answer this most basic question but I will quote here only one example, that by Morris Zelditch, Jr., in his article "Role Differentiation in the Nuclear Family: A Comparative Study," which appeared in the book Family Socialization and Interaction Process, by Talcott Parsons and Robert F. Bales. Briefly his thesis can be summarized thus: In the social system that evolves within the nuclear family there can be differentiated two basic roles: that of instrumental leadership and that of expressive leadership. Instrumental leadership, which involves primarily a manipulation of the external environment and consequently a good deal of physical mobility, is performed by the adult male (the father), while the role of the expressive leader is played by the mother: the source of security and comfort in a family. It shall not be my purpose either to dispute or uphold in detail this thesis put forth by Mr. Zelditch. My purpose in citing him was to exemplify the kind of thinking which I am afraid adds as much to the confusion as it succeeds in clarifying. That there are universal aspects of male and female roles is a contention of contemporary anthropological research that need

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not be questioned, particularly since the proponents of this thesis themselves admit to a few exceptions. However, the problem is how far beyond the obvious physiological factors we are on sure ground in claiming basic and universal characteristics. Still more pertinent to our discussion is the question: T o what extent is so definitive an assignment of general roles to the male and female really feasible? Does not our growing knowledge in other areas of the sciences devoted to the study of the human being indicate that such clear lines of demarcation as we once had drawn, for instance, between physiological and psychological aspects are becoming less and less tenable? Let us look for the moment at the realm of physical relations between the two sexes. Those who feel comfortable in making differentiating generalizations insist on the universality of the pattern which makes the man the aggressive, the woman the submissive partner. However, recent studies on the sex activities of women have indicated a rather broad scale ranging from almost total passivity to a high degree of initiative in pleasure seeking and indeed aggressive sexual conduct. Not only can it be said then that there is only a short distance from the level of highest female aggression to the level of least male activity, but beyond that one could safely assume that comparative studies would indicate a very considerable overlap between the male and the female group. T h a t is to say, there exists a large number of men and women for whom generalizations about their "maleness" and "femaleness" would not seem to be of any practical value. As a matter of fact there are studies available which show that cultural and socioeconomic factors as much or more than basic, natural laws govern the forms, frequency, and objects of human sexual activity. I have dwelt on this point at such length because of my great concern over the far-fetched conclusions which have been drawn from the basic differences between the sexes with reference to the appropriate role of men and women and, more specifically, fathers and mothers. It is my contention that we must face this matter squarely and find an orientation which seems appropriate to us, or else we will not be in a position to plan intelligently for

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our children and their families, and to develop the supporting services they need. The first area in which many critics of new family developments see violence being done to what they consider basic laws of God and nature is that of the work activities of men and women in and about the home. They hark back to the days when the man protected the family from enemies and hostile beasts, went out hunting, and plowed the ground, while the woman was home nursing the baby, weaving and sewing, and taking care of whatever abode was available to them. I do not believe I am exaggerating. Only a very few years ago a distinguished psychiatrist emphasized in an article addressed to social workers that it was important for boys to learn that man's role was "to aggressively defend the home." The truth of course is that industrialization and urbanization frequently remove the man far from the home, leaving it up to the woman to defend it, or, more appropriately, leaving the defense of the home to the authorities we have learned to organize for this purpose. Men no longer need to carry arms in countries where industrialization has taken hold. Today physical strength and endurance are measured in many ways, and statistics of the United States show that there it is the women who aTe the stronger sex, if longevity is a criterion, and that many women are physically more active around the house, do more walking and lifting, than do their husbands in the office or at a machine in the factory. We cling to the notion that work around machines is men's work, yet in the modern household, which slowly but steadily comes within the reach of "just plain people," the woman who, true to custom, keeps the home is learning to manage the vacuum cleaner, washing machine, dryer, dishwasher, and other machinery as well as the family car. In case this reference to washing machines and family cars may sound too far-fetched as we think of some of the nations represented at this World Child Welfare Congress, it should be emphasized that we are addressing ourselves to future developments, keeping in mind the forecast of rapid industrialization even in countries which presently are referred to as underdeveloped,

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and with an eye to the prediction that within forty years a quarter of the world's peoples will live in big cities. So far the facts presented imply that the basis for the traditional male-female division of work in the household is evaporating in the modern, urban home. How about the other function of the male, as provider, supplier, or wage-earner? Certainly in that respect we face a quite different situation. All over the world men are still predominantly fulfilling these functions but with an important and in our context most significant modification: increasingly women, too, have assumed these functions, at least for certain periods of their lives. It is important to differentiate this situation from the agricultural societies where women and children help in the fields. What we are now observing is that as industrialization and mechanization progress, specific jobs which were formerly the prerogative and indeed one of the distinctions of a man are now held competently and comfortably by women as well. In other words, to return to our previous discussion of the male role and female role, while there continue to be certain jobs which are occupied primarily or exclusively by men, work outside the home is no longer a general distinguishing characteristic of the male. It is of course one of the consequences of industrialization and the departure from the large extended family that many women are forced to work outside the home just to provide a minimum subsistence for the family. It is equally true that as urbanization and mechanization progress many women take on a job because they seek a fuller life outside the home or because they want to earn money to gain some of the mechanical household equipment which industrialization brings to them. However, in any case, we are not at this point concerned with the problem as to whether mothers should or should not work outside the home. This is a matter of judgment which does not fit into this particular discussion of male and female roles. T h e third characteristic of the male role is conceived by Mr. Zelditch and many other authors is that it is the male who is the

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manipulator of the outside world, the person who participates in public affairs, who represents the family group outside the home. That this is likewise a distinction which is losing its validity is amply attested by the tremendous contributions women all over the world are making in ever greater measure to the improvement of public life and community services. As a matter of fact, where work keeps men away from home, women have had to assume such civic responsibilities. Again this is not just typical of the Western world. At the United Nations Conference on Mental Health Aspects of Urbanization it was reported that when the Planning Minister of Pakistan had been asked, "What is the most important thing for mental health in Pakistan?" he responded, "Undoubtedly a change in the position of women. If this could change, then indeed nearly everything would be affected, nearly everything in our whole planning scheme in Pakistan, and many of the ill effects would never occur at all." On the basis of the foregoing considerations I would therefore propose to you that as we consider the effect, up to now, of industrialization and related socioeconomic changes in the family, and as we contemplate future supportive steps on behalf of the family, we will do well to question seriously those who insist on the maintenance of traditional general patterns of male and female functioning. We should rather, on the one hand, be ready to accept the fact that the radical changes of industrialization, urbanization, and mechanization will at the same time limit and broaden the activity base of both men and women. On the other hand, we should be mindful that social and economic progress, well directed, should bring forth ever greater opportunity for individual expression. There was a time when we had rigid concepts not only as to how a man should function differently from a woman but also how the apprentice should conduct himself differently from the journeyman, and the journeyman from the master of the trade. Today we have largely freed ourselves of such formulas. Therefore, it need not be a sign of decay that the concepts of sex roles are less distinct; to the contrary, it should provide broader opportunities for the men and women in the family

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group to uphold their individual human potentialities to a fuller extent. There are certain rather superficial critics of modern development in the field of human relations who are always quick to come forth with one accusation: that everything is being made "too easy" for people by catering to their whims. T o the contrary, those of us concerned with the welfare of children will need to become more and more concerned with the increasing problems young people face as they contemplate marriage and courtship. Marriage, of course, always was considered a solemn matter, but in former days the support of the large extended family group, the continuing counsel of mother and mother-in-law, the example of other young couples, and finally the existence of clear-cut patterns of conduct and activities expected of men and women provided guidance and helping hands for the young couple. In the industrialized and urbanized society, however, which, as I have tried to show, moves away from rigid role patterns and at the same time separates the young couple from the larger family group, often in a different locality altogether, more, not fewer demands are made on bride and groom. If we spoke a few minutes ago of increased opportunities for the unfolding of individual potentialities, it is important to be mindful that awareness of one's potentiality is indeed a sign of maturity, as is the sharing of activities by husband and wife. Therefore we must be concerned over the fact that just at the time child marriages are coming to an end in Eastern countries, statistics of certain highly industrialized Western countries indicate that marriages are being contracted at an increasingly younger age. Further, there is much mention today of the rapid spread throughout the world of "romantic love" as a basis for marriage. In our present context its significance lies in the independence of the man and woman from the family and in a general informality, that is, a lack of ceremonial custom in choosing the marriage partner, in contrast to former generations. T h e corollary of this independence is the increasing frequency of separation and even actual isolation of the new young family from either or both of

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the parent families. On the other hand, a peculiar new situation has developed in some Western countries where after independent engagement and marriage the young couple, often because of the long period required for vocational preparation, is unable to maintain itself and must depend on financial support from the parents. In the face of the increase of divorces it would seem well to consider whether we shall not have to direct more of our attention and effort to the point of engagement and marriage so that the developing new patterns can be channeled into constructive lines. Unfortunately there exist as yet altogether too few opportunities where young people about to be married can get effective counseling, beyond that in the religious area. Indeed if we think of the development of maturity, then we must think of the whole broad program of education at home and at school, and see to it that it more adequately meets these new needs. This need for better marriage preparation becomes still more compelling when we think of the time the young couple assumes parental responsibility. It is here that the various considerations we have presented regarding the roles of men and women have found expression in particularly animated controversy. T h e focal point of this far-reaching dispute is the relationship between the mother and her infant child. At the last World Congress on Mental Health in T o r o n t o a seminar on child development devoted considerable time to the thesis that we are dealing with a "symbiosis," a physiological as well as a psychological living together of the mother and her infant child for many months after birth, centering around the nursing of the child by the mother. T h e claim is made that in this relationship the father can only be an intruder. T h e r e are references in the literature by distinguished authors which go so far as to say that during the first six months, yes, the first two years, a child should be in the exclusive care of the mother. T h i s viewpoint gained considerable strength in the period after World W a r II when the results of the relationship between mothers and infants in certain primitive societies were published. It seems to me that Margaret Mead, herself one of the

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foremost students of primitive culture, is counseling us wisely when she insists that insights gained from studies of primitive people must be applied in forms appropriate for modern industrial society and warns against taking as a model in 1958 the primitive mother who has a natural birth and breast feeds easily. Instead of attempting to return to biological mechanism, she continues, we should clarify our theories, so that we may prevent overemphasis on the ancient biological responses of lactation from obscuring the appropriate tasks of twentieth-century parents. She reports that experience in Far Eastern societies has shown that this close and exclusive tie between mother and infant results in a comfortable sense of security, but also a fear of and inability to meet strangers. Another example of a family structure that was appropriate in one culture but is no longer appropriate today. (May I say here parenthetically that I am not opposed to the breast-feeding of infants; I am critical of giving it an exaggerated general significance in the life of infant and mother.) T h e problem here, as with so many of the others we have been discussing, lies in the unfortunate insistence of some people to be definitive and rigid in the area of human relations, when to the contrary the greatest flexibility is desirable. T h e r e is of course a most meaningful relationship between the mother and her infant child, but it not only need not lose its value, it can actually be enhanced when it relates itself to others, particularly the father (but also to other children in the family). This problem of the care of the infant has also been the subject of controversy in another direction. Those particular critics hold that it is an effeminate affectation when fathers become involved in the physical care of their infants—help to clean them, feed them, put them to sleep. They insist that this means a particularly serious confusion in role conduct and will result in retarding or preventing the infant's image of the father as the strong, aggressive leader and will thereby interfere with the development of a sound family structure. Unfortunately, the research we have available in the area of infant care is overwhelmingly based on investigations of mother-

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child relationships, with particular emphasis on the widely publicized findings of Bowlby. However, it should be stressed that we have at least the beginnings of research on the effect of fatherdeprivation of infants, and these preliminary results would support the thesis that infants need contact with their fathers as well as with their mothers. Actually, of course, men are quite capable of expressions of tenderness and gentleness and of sensitive emotional relationships; no one disputes this when we think of young lovers. There is no reason why we should not recognize fatherhood in similar (though of course not identical) terms as motherhood. Here again, however, I must once more emphasize the necessity of recognizing individual differences. Not all fathers find pleasure in taking care of the physical needs of their infants, but it is also true, though less frequent, that not all mothers take pleasure in doing so. The point of these comments is not that all fathers must take turns with their wives in caring for the infant children; the point is that it is not harmful but rather beneficial to both infant and father to have some tangible, direct relationship from the very beginning of life. This, someone may say, would take us back all the way to the beginning of pregnancy. Indeed this is not farfetched at all, because in some countries efforts are made to help the expectant father understand the process of pregnancy so this will be a period of sharing with his wife rather than a period of increasing separation which only too naturally is continued into the early infancy. Undoubtedly many people will have difficulty in accepting this view, because for too long we have allowed the lives of individuals as well as nations to be governed by principles of an authoritarianism which depended on the father figure as its particular symbol. I am aware that in most recent years it has become a fashion among sociologists, particularly on the European continent, to deny altogether that the concepts of authoritarianism still have any significance in the family field. Obviously there is not time here and now for a detailed discussion of authoritarianism as it manifests itself in present-day pat-

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terns of family life in most countries, certainly i n c l u d i n g m y o w n , the U n i t e d States. B u t here is an issue which should force us w h o work in the child welfare field to m o v e out f r o m o u r o w n particular institutional responsibilities into the market place of p u b l i c o p i n i o n to share our k n o w l e d g e and insights w i t h others. T i m e is r u n n i n g out on us. W h a t k i n d of concept d o w e w a n t o u r children to have of man's family and the family of man? N o o n e has issued a m o r e forceful w a r n i n g o n this than Dr. B r o c k C h i s h o l m , the distinguished former D i r e c t o r G e n e r a l of the W o r l d H e a l t h Organization, in an address, " A N e w L o o k at C h i l d H e a l t h , " he gave just ten years ago: It is quite clear that we must learn to live in peace with each other throughout the world. If we do not do so, there is little prospect that our children will finish their lives according to the statistical probabilities on which the life insurance companies depend. In fact, there is little prospect that any but a few of our population, a very small minority, will survive the next 20 or 25 years if we go on being the kinds of people we have been, and if we allow our children to reproduce our patterns. It is well worth our while to look at the way we were brought up, the way we were developed, and hope to find out what is wrong with us so that we may prevent our children from assuming those same patterns. T h e r e are certain things that are clear now about the development of children. It is clear that there are enormous numbers of adults in the world who lack security, who have lacked security from infancy, and because of that lack of security are available as followers specifically of those people who have excessive needs for power, who have neurotic needs for leadership, who have vast needs for individual personal importance and prestige. There will always be such people. W e can take it for granted that there will be a continual crop of neurotics in the world for quite a long time yet. They are the potential leaders in strange and weird directions, but it is time to begin to do something about the masses of people who up until now have been available as followers of such people. It becomes clear that the first necessity is to produce a degree of security in small children that will make it unnecessary for them to search for security in peculiar and unworkable ways when they become adults.

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T o this ringing appeal from Dr. Chisholm came recently an echo from India, in an article by Professor Manu Meta Desai on " T h e Child in the Indian Family." She said: The major responsibilities of Indian parents today therefore lie not in helping their children to accept and follow traditional ways and standards but to help them evolve a new synthesis between the old and the new, with a minimum of strain and a maximum of ease, as well as to impart in them a sense of loyalty and responsibility to groups and peoples far beyond the limits of their narrow family caste and community life. In such a program as Mrs. Desai proposes emphasis must first be given to developing in the child himself a sense of human dignity and worth. This can only be a reflection of the human dignity the child sees in father and mother alike. An infant gets his feeling of security from the affectionate and tender care of his parents—not from a realization that father is a person of authority and strength, who can militantly defend the home. Next we must avoid passing on to our children all our prejudices, choices, and cherished biases by which we subtly lead them to discriminate against others because they are poor, or have a different shade of skin, or worship in a different temple, or happen to be physically or mentally handicapped in some way. And that means that early we must help our children to meet with others beyond the family circle, in play groups or nurseries where there are not just those who are alike but also others who are different. This will not be easy, to be sure, because through generations we have so carefully and cleverly built up walls of separation to which we point as excuses for not being able to do too much toward achieving the brotherhood of man we piously espouse. Meanwhile, however, we are reaping the harvest we have sown. Everywhere there are young people who are increasingly ill at ease, whether restless and aggressive or sullen and apathetic. Of course there will always be some conflict between generations; the basic difference in age causes this as naturally as we have friction wherever there are moving parts in a machine. But

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there is more than that to the youth problem of today. Never has there been a generation of young people so confused and bewildered by the inconsistencies and insincerity in the actions of their elders. We push them ahead in adolescence, yet hold them back as they reach the threshold of adulthood, begrudging them entry into the political and economic life. We surround them as children with sexual stimulation in sound, print, and picture, yet try to impose on them an unrealistic and rigid code of heterosexual behavior in their adolescence. We offer them technological marvels and open up vistas of a wonder-world of the future, yet in the field of world politics we seem bent on repeating the errors of judgment that have brought catastrophe in past years. We are quick to complain when they cannot get along in this newfashioned world, but show our own limitations by recommending some "old-fashioned discipline" that was a part of a way of life long since past. We are always ready to write searching books about them (and that number becomes ever greater), yet we are not ready to subject ourselves to similar close scrutiny and sharpedged questionnaires. I think I could not possibly be more to the point or more forceful in assessing this present conflict between generations than is the anonymous young German author of a poem that appeared two years ago. It was composed in response to all that has been printed and said in that country about the so-called Halbstarken, the "half-strong," the unruly and often overaggressive city youth. Here are five of its fifteen telling verses: Because you are weak You have called us "the Half-strong." Thus you condemn us, The generation you have sinned against Because you are weak— We gave you two decades To make us strong— Strong in love and strong in good will. But you made us half-strong Because you are weak.

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You have shown us no way to go That has meaning Because you yourselves do not know The way—and have failed to seek it— Because you are weak. Are we not caricatures of your deceitful lives? We are noisy and rambunctious in public But you fight without mercy in secret— One against the other. Cutting each other's throats in business, Intriguing for better-paid jobs. For each one of us who is noisy and loud Show us one of you who does good deeds in quietl Instead of threatening us with rubber truncheons Send men against us Who can show us Where the way is— Not with words, but with their lives. What specific steps can we take toward the development of services? First, we must always be mindful that there are still millions of children in this world for whom there has not been provided as yet even a minimum of subsistence. T h i s was forcefully brought out in the report written in 1956 for the International Union of Child Welfare by its committee of experts, and eloquently emphasized yesterday by Leonard Mayo. It is necessary that we set time aside to concentrate on psychological factors; it is imperative that we never for one minute forget the urgency of the world's hungry children. Second, parent education must become increasingly our concern. I was very happy to see, in a report submitted by Finland to this Congress, information on the astonishing spread of parent education programs and, in particular, parent discussion groups in hundreds of localities throughout that country. Reports submitted by Germany and Great Britain also stress the importance of parent education, and we have here with us as leader of Section I, M. Isambert, the distinguished director of the Ecole des

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Parents in Paris. On the other hand, a great deal of opposition to parent education does exist. In part it comes from professional people who are too impressed with their own psychotherapeutic skills to recognize the possibilities of an educational program. However, there is also a justifiable reaction against programs so inferior in content and direction as to be actually of potential detriment. As has now been amply demonstrated, parent education programs, under competent leadership, can be a most important tool in helping parents come to a better understanding of themselves and their children in many of the areas considered this morning. Might it not be that in the past we have been too busy organizing and providing child welfare services to which the parents responded poorly because no effort was made to help them understand their children's needs which these services were trying to meet? Third, next to parent education we should think a great deal more about parent participation, that is, the active cooperation on the part of large numbers of interested parents in the formulation of policies, the support of legislation, and the initiation and even the administration of needed services. Perhaps here is a case where child welfare workers need to take a second look at their own prejudices and traditions. For too long we have looked upon the parents of our children as clients rather than as coworkers. Yet in the most recent years the parents of handicapped children, particularly the mentally handicapped children, have brought forth in several countries a degree of progress in legislation, in financial support, and in the improvement of services needed by their children which no one would have deemed feasible nor even less would have dared predict. Again there is no time here to dispute all the reasoning that can be marshaled against such steps. Naturally there are here, as with everything we undertake, specific and considerable obstacles but also tremendous potentialities. Should we not feel compelled to study closely the facts of the success story of the movement of parents of mentally handicapped children, even

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though some of us "instinctively" feel this cannot work? It is reassuring to know that one of the commissions of the International Conference of Social Work in Munich did recommend such parent participation. Fourth, the rapid progress of industrialization and urbanization will require a considerable increase in services to support but not supplant the family. In order to meet these needs we must constantly reevaluate our services—with courage to discontinue what has become outdated and with imagination to invent new services. The fact that industrialization and urbanization do not have specific but rather broad, generic effects should move us to much greater readiness to work with other professions which can contribute to our understanding of these socioeconomic changes. Above all, we must make sure that in our organizations we do not ourselves continue traditional patterns which were suitable for another era. What is our approach to our adolescent boys and girls? Do we ourselves in our organizations perpetuate authoritarian family patterns? Are we implicitly maintaining practices or prejudice? Fifth, I have purposely included in my remarks a few references to countries around the world to impress on us the extent of cross-cultural influences. We badly need careful, large-scale research projects involving countries all over the globe to assess these developments and to make sure that we learn from each other. Before we can undertake this with the help of top scientists we need to improve our means of communication, that is, we must make a greater effort to work out common terminology and definitions so we may understand each other. As has been pointed out, we shall have to provide vastly expanded social services. In order to be able to get public support for them we need studies of cost accounting which will show whether the services we render are good public investments. Industrialization will move the large-scale programs into public hands, leaving only specialized services to private support. Some time ago sociologists quite rightly began to question the

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sociological status of some of those who had provided our psychological working hypotheses, pointing out that there often was a considerable and detrimental cultural difference between them and the clients we were trying to serve, resulting in psychological misdirection and misinterpretations. As we now will have to depend much more also on sociologists, it is well to suggest that we look at the psychological orientation of our sociological collaborators, so that we know to what extent their counsel and guidance may be colored by psychological motivations. And certainly we must subject ourselves to the same searching inquiry. I hope my comments have conveyed my conviction that, while we face right now some critical moments in our work in support of children and their families, we are moving forward with a bright future ahead of us. If we have the courage to fight hard enough for our convictions, we shall not fail our children.

6

Not All of One Mold It is estimated that 1 2 % percent of the school children in the United States are "exceptional children," who by reason of chronic illness or physical diability, social or emotional disorders, limited or generous mental endowment, need special attention and specialized facilities or services. T h i s figure may come as a surprise to some people. T o others it underlines the infinite differences we find everywhere in God's world, where persons are "not all of one mold"—where, indeed, no two are of the same mold. One distinctive result of World War II has been a greatly heightened awareness of and interest in the physically and mentally handicapped. T h i s has happened throughout the world. In Indonesia and Pakistan, in J a p a n and New Zealand, in Central Africa and Brazil, assistance to the handicapped has been recognized as a new and vital challenge. T h e r e has been much clamor for churches to become aware of their obligations and opportunities for serving the handicapped and their families. Much needs to be done, surely, but many outstanding services to the handicapped are already being rendered by individual churches, both to their own families and to the community at large. Serving the handicapped is not an extra activity to which we may address ourselves after taking care of our "main church work." We must speak not of special children, but of children with special needs—the same basic needs as other children plus the specific needs resulting from their condition. A church which approaches the problem on this basis will first need to consider in how many of its regular activities these children can participate, then determine what special activities can be developed to meet their needs. A severely handicapped child may interfere with the family's attendance, and yet the family needs the full ministry of the church.

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Services to the Family Frequently a church may have to make a special effort to approach the parents of a handicapped child. T h e parents may feel awkward about asking for special arrangements; they may feel embarrassed about a handicap which they consider shameful. Or, having a handicapped child may have so hurt them that they have not been able to reconcile the fact of the handicap with the idea of a loving God. It is important that we do not make judgments about parents' attitudes. Dr. Elizabeth Boggs emphasizes, in her contribution to the useful volume The Child with a Handicap/ that what often we see as guilt feelings of parents may in reality be a form of grief, a normal and appropriate human emotion whose suppression is unhealthful. Some parents may respond best to spiritual counseling, as they face their child's problem, and then move toward acceptance of the church as a place where their child can benefit from special activities. Other parents, on the contrary, can best be approached through a special service the church makes available to the child; later they will be ready to recognize and accept the help the church can offer to them as parents. In general it is helpful for parents of handicapped children to have opportunities for meeting with other parents facing similar problems. Yet it is important to recognize individual differences— some parents may come to church to seek solitude and would react negatively to pressure to join a parent discussion group. In some cases the tragedy of having a handicapped child has made the parent a better person to serve others. Dorothy G. Murray, in her lovely book This Is Stevie's Story,2 relates her thoughts about having a severely handicapped child: "How can God use me in this crisis? How can this mental and spiritual torture mold me into a person who can be more useful to Him? Am I big enough for this sorrow to make me better, instead of bitter?" T h e fact that she has become a leader in the National Association 1 Edgar E. Martmer, ed., The Child with a Handicap (Springfield. 111.: Charles C. Thomas, Publisher, 1959), p. 355. •Dorothy G. Murray, This Is Stevie's Story (Elgin, 111.: Brethren Publishing House, 1956), p. 43.

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for Retarded Children, helping countless other parents while raising her own family, attests to the strength a person can gain by facing a crisis from a firm spiritual viewpoint. Parents often can benefit from counseling on such problems as how to explain the handicap to the child and how to keep a balance between protecting him and challenging him to achieve. In an address s Dr. L e o Kanner, the distinguished child psychiatrist, pointed out two dangers a family might face. First he related the story of a little boy whose severe heart condition was the focus of the family's attention to such an extent that the boy himself was submerged by it. Billy knew of himself essentially as a sick heart. When given an opportunity to unburden himself, he reported that he often talked to himself when he was alone. This is what he kept repeating over and over in his monologues: "I am a person. I am a person." Thus he tried desperately to clutch at whatever remnant of identity he was able to retain in this situation. Dr. Kanner's other concern dealt with two types of parents: those who are so intent on accepting the handicap and helping the child to accept it that they overlook opportunities for overcoming it to whatever degree is possible; and on the other hand, those who, unable to accept a child's limitation, make him "miserable through their constant corrective efforts to mend the unmendable. T h e child, finding himself in a repair shop instead of in a home, cannot help smarting from the impact of all this molding and hammering." But the church must not think of serving only the parents of the handicapped child. Brothers and sisters also feel a heavy burden when someone in the family is crippled, disfigured, disturbed, or retarded. W i t h o u t help this may result in poor relations not only with the afflicted child, but with the parents as well. T h e church is particularly well suited to provide this help. 4 T h e church may also offer services relating to the management • " T h e Emotional Quandries of Exceptional Children," in Helping Parents Understand the Exceptional Child (Langhorne, Pa.: T h e Woods School, 195«), pp. *i-s8. •See Chaxle« F. Kemp, The Church: The Gifted and the Retarded Child (St. Louis: Bethany Press, 1957), p. 175.

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of the handicapped child in the home. A group might build a special table, or a ramp for a wheel chair. Perhaps a sitter service might be provided to allow the mother some time away from home. Some handicapped people have to leave their homes to spend considerable time in hospitals or other institutions. In these cases the church must be aware of its continuing responsibility to be of service and to help maintain and strengthen home ties. Services to the Child Fellowship is an essential factor in Christian life and in the expression of Christian faith. T h e church may be the only place in the community where the family with a handicapped child can join together in an activity. Even if the child has to enter a special group, the mere fact that the entire family goes to church at the same time can be of tremendous significance. T h e church must plan to accommodate a person who has trouble climbing stairs or who requires special seating arrangements. Church school programs may have to be adapted to the special needs of handicapped children; perhaps more emphasis on music, on rhythm, on the spoken word, or on visual presentation may be required. Organizing a special scout troop for handicapped children or, better still, making special arrangements for a handicapped child to participate in an existing troop provides additional social opportunities. As the handicapped child grows older, the church can take cognizance of his need to give love as well as receive it. Seemingly insignificant opportunities for him to be of service to others, to assist the teacher, to provide what others can use, may be important steps toward a fuller life. This progress often can be accentuated by providing opportunities to show how the handicap can be overcome—allowing the wheelchair patient to bring things, letting the palsied child show his limited but developing dexterity, giving the retarded child a simple part in a play. Services to the Community How a family feels about a handicapped child depends frequently on how society in general and the particular community

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feel about handicapped people. T h e church has an important role in community planning for the handicapped. T h r o u g h sermons and the Christian education program the congregation can be helped to understand the needs of the handicapped and their families and the extent to which handicaps can be overcome if acceptance and help are provided. Many other persons can be reached as the church works through the local council of churches, the ministerial association, and community agencies. Churches have opened their facilities to special activities for handicapped people in the community, such as classes for retarded children or special recreation groups. O f t e n a church can become a gathering point for c o m m u n i t y action on behalf of the handicapped. Churches of a community often work together, since one church can seldom develop adequate specialized services for all its handicapped people. O n e church may serve the physically handicapped and another the mentally handicapped in a certain age group;, thus no one is neglected. T h o u g h the challenge to serve the handicapped child is great, it is infinitely more challenging to extend a welcoming hand to the handicapped adult. It is deeply ingrained within us to overlook differences in children, to tolerate their deficiencies, and to accept their inadequate performance. But many members of a congregation may be reluctant to accept "as one of them" the severely handicapped adult. Yet as we learn more and more about what the handicapped can accomplish and how well they can serve, this attitude of nonacceptance becomes intolerable. W e can be sure of one thing: in a church where the adult handicapped person is fully accepted and enabled to participate actively, handicapped children will find a helpful climate.

Reprinted by permission of the National Council of the Churches of Christ from the International Journal of Religious Education, May, 1961.

III. The Child and the Adult in Residential Care

7

New Horizons in Residential Care of the Mentally Retarded Address at the 1959 Annual Convention of the National Association for Retarded Children Institutional care in general is not well accepted these days. Nearly everywhere there are efforts to do away with long-established large homes for children and homes for the aged. A n d so even in the field of mental retardation some people have maintained that as far as the f u t u r e of state institutions for the mentally retarded is concerned there is no basis to think of such a future since "institutions are on their way out." I most strongly disagree with this view. T o be sure, we shall see many radical changes in our institutional patterns across the country, but we certainly will not only continue to need, but in my opinion will undoubtedly increase the use of, facilities for residential group care of the mentally retarded. But what kind of facilities will be needed for what kind of group care? As we consider first for w h o m we shall need these institutions of the future, some will be quick to suggest that present statistics provide the answer: there is a steady trend toward admission of only the more severely retarded individual. T h i s is surely true as of now, but we must consider possible changes the future might bring, and here we might well hope that continued medical progress will substantially decrease the numbers of severely disabled and injured y o u n g mentally retarded children w h o now fill our waiting lists. Certainly the monumental "perinatal" study currently undertaken at the National Institute for Neurological Diseases and Blindness in conjunction with fifteen medical centers in all parts

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of the country should direct us to improvements in such medical care. On the other hand, however, there is good reason to question the belief that residential care in the future will be needed only by the most severely retarded and generally handicapped persons. I would venture to put forth a quite contrary view and submit to you a list of other types of cases for whom we shall need and shall develop new types of such care. T o be sure, we shall first of all provide hospital facilities for those so severely handicapped as to require permanent aroundthe-clock nursing care. May I plead with you at this point to strike the words "custodial care" from your wordbook and to discourage their use by others in connection with the mentally retarded. There is nothing wrong with these words themselves, but their appropriate use is in the correctional field as regards prisons and reformatories, where secure custody is indeed a major program point. But what we need in our field for these most severe cases is not custody but nursing care under medical auspices. Next in line I would put those children who are suffering from a combination of physical and mental handicaps, but who can be helped materially already in infancy by an intensive therapeutic program in a residential setting. Alleviation of the more severe physical debilities in this fashion should make it possible for a substantial number of these children to be cared for in their own families. I realize that this may sound far-fetched and dreamy at a time when in several of our states restrictions are still in force depriving even our high-grade children living in the community of the therapeutic and restorative services under the crippled children's programs. But what I suggest here is not just a humanitarian concern with the inherent rights of these children, but a sound and economical program in the interest of the state as a whole. Next we come to quite a different program with emphasis on training rather than medical needs. Many severely retarded children age 5, 6, or 7 or thereabouts could profit from an intensive residential education program over a period of one, two, or three

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years, which would help the youngster sufficiently so that he could return to his home and make a satisfactory adjustment there. I am speaking here of a group of children of whom some are at home while others are under care in institutions, but of whom none are receiving the nurture of an intensive specialized education program that would enable them to make the kind of progress other more fortunate children can make in community classes. Others who would benefit from an intensive temporary residential training program are certain of our adolescents, who during that period of contradictory growth patterns, hard enough for the average youngster, will respond better to a specialized education program woven into a pattern of group living. Please note that I am not suggesting this as a proper step to take with all retarded adolescents, but once again only for a group with special management needs which cannot be met adequately at home and in community programs. That severely retarded adults can make an adjustment in the community has certainly been demonstrated by Dr. Gerhart Saenger in his now famous study for the New York State Interdepartmental Health Resources Board. But even though Dr. Saenger showed that of all the former pupils of the original classes for the trainable in New York City the older group, then in their thirties and forties, made the best occupational adjustment, we must foresee that the time may come for many of these older severely retarded individuals when the pressures of community living will become too much for them and they will wish for a more sheltered environment with others like themselves. In contrast to the other groups I have mentioned, they will require neither intensive medical care nor specialized educational or training efforts. One might gather from my enumeration of categories for whom we need to provide specialized programs (and I certainly have not made this an exhaustive listing) that I foresee a tremendous increase in institutional facilities. However, it must be remembered that several programs were presented as temporary arrange-

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ments providing for eventual and in some cases early return home. Furthermore, long-range planning for residential care must take into account the fact that certain new community programs, such as day care centers, can bring sufficient relief to the parents so as not to make it necessary for them to ask for care in an institution. These comments apply in varying measure to all the age groups of the mentally retarded, but time does not permit me to go into more specific exemplification of these trends. Let me merely state that in the context of these considerations we must be mindful of the Independent Living Rehabilitation legislation and its projected help for the homebound, most severely retarded individuals. Finally the fact that I have presented several specific categories for whom a new type of residential facility might be applicable does not mean that I naively assume all cases will conveniently fall into these and other categories. There undoubtedly will always be certain children and young people who for various and sundry reasons, inherent in their own or their family situation, need the protective care and training of an institutional setting. In summary, then, it stands to reason that so many different types of needs call for a number of clearly differentiated types of residential facilities, of different sizes, with different staffs, different buildings, and different programs, even in our smaller states. And who will staff these institutions of the future? I am aware I am treading on dangerous ground here. Any suggestions for radical changes in institutional staffing can easily be and usually are mistaken as attacks on those who now perform their duties diligently and faithfully. This is decidedly not my intention. But if we consider that during the past ten years the field of mental retardation has undergone what can only be characterized as a revolution, it is a natural consequence that the staffing in our institutions needs to undergo a rigorous scrutiny to determine what changes need to be made in the light of newly gained knowledge. As community services, including schooling, are showing an even greater readiness to provide for new programs and new staffs specifically for the needs of the retarded, the admittedly less

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flexible institutions should feel greatly challenged to keep in step with these developments. I do not want to include here a long recital of the many jobs we need in institutions and in what ways we need to improve the personnel standards pertaining to each. Rather I would like to emphasize a general problem which has impressed itself on my mind as being of number-one priority as I have traveled from state to state visiting public institutions and the departments administering them. This problem relates to the social structure we find in our institutions, or, as the sociologists call it, the power structure. Some excellent studies have recently been published showing how, in our state hospitals for the mentally ill, this power structure from the superintendent down to the ward physicians, down to the nursing staff, and then on down to the lowly attendant very effectively interferes with the main purpose of these state hospitals, namely to cure the patient. In other words, it is the institutional organization which is in the center of things, rather than the patient whom the institution is to serve. In the course of these studies, the researchers found that particular problems were created when an attempt was made to strengthen the hospital's program by the addition of specialized personnel, such as clinical psychologists, educators, occupational and recreational therapists, psychiatric social workers, and the like. As long as the psychiatric social worker, for instance, was limited, as unfortunately they are in many institutions, to a mere gathering of social history materials on the patient's family, no particular problem arose. But as soon as plans were made for this social worker to become concerned with the patient, and to make a direct contribution to the rehabilitation program on the wards, then there was an immediate conflict between the traditional "line" of authority from superintendent to ward physician to charge nurse to attendant on the one hand, and the activities of the psychiatric social worker on the other hand. T h e same, of course, was found with the clinical psychologists as soon as they moved on from a restricted routine testing program to active therapy with the patient.

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While no comparable study has as yet been published, my observations in many institutions for the mentally retarded have borne out that we are facing the same problems in these institutions. Another indication of this power structure which in turn governs the communication system within the institution is found in the way in which the institutions set up their case conferences. Typically, staff conferences are held in the administration building and not in the wards where the patient lives and where the attendants have their twenty-four-hour-a-day contact with them. Hence even in those more progressive institutions where the charge nurse or perhaps even the attendant is permitted to sit in on the case conference, the setting of that conference in the administration building, the seat of all wisdom, adversely affects meaningful participation by the attendants' staff. Again a good number of institutions have made an effort to set up communications (through memoranda, circulars, staff meetings, etc.) in order to involve the personnel charged with the daily care of the patient. Yet if one takes a close look, one discovers that this communication is often but a one-way street: the vital observations which the attendant makes (or should be able to make if properly guided) are all but lost in the ponderous hierarchical system of most large institutions. I am well aware that there are available in print many staff training manuals which put great emphasis on the concept of team work within the institution. T h e point I am making (and I might say here that I am also basing this observation on my own fifteen years of institutional experience) is that the reality of the traditional power structure interferes with the new theoretical concept of team work. This leads to a subsidiary problem. I have implied in my remarks that we should strive in our institutional planning to secure for the staff concerned with the daily care of the patient (first of all the attendant) a more meaningful participation in the basic purpose of the institution, in our case physical restoration, therapy, education, and training. Obviously in order to achieve

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this we need an attendant who is better prepared for his job, and this implies also a more adequate compensation. At this point in my discussion, I am usually challenged by some institutional administrator who claims that this would result in "overtraining" our attendant. "Whom would we then have available on the wards willing to do the dirty work?" is a common reaction. Several things need to be said here. First of all, it is obviously illogical to say that because we need a great deal of clean-up operations with the untidy crib cases, we should not have a different type of personnel in the wards or cottages where we have high-grade retardates. Secondly, and of equal importance, the point has been made by some people that a move to introduce more highly skilled personnel might well result in more effective training even among the most severely retarded to the point of their achieving some degree of tidiness and thus of requiring less care. In any case there is definite need for controlled studies to test this supposition. In line with the suggestion that we have a greater diversification of personnel, I should mention here that in at least one state a move is definitely under way to employ rehabilitated former patients as special employees under civil service regulations for specific closely supervised menial ward duties. T o be sure, this can only be undertaken in a state with a quality of supervisory personnel that would provide guarantee against abuse of this situation. But in its dual purpose of solving the problem of finding appropriate ward service for the crib cases and of securing simple jobs for the mentally retarded, capable of assuming such responsibilities, this plan merits most careful study and a systematic testing out. In all these efforts we are faced in most states with the problem of conveying to the civil service authorities the new concepts in care and training of the mentally retarded which have developed during the past few years and which should lead to a definite shift in our patterns of institutional work. Here is a j o b in which parent organizations can make a particular contribution, both in their own capacity and by enlisting the sympathetic aid of civic and professional groups in the community.

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In all the matters I have discussed here regarding the staffing of our institutions for the mentally retarded, the role of the superintendent is of particular importance. As you know, a controversy is going on at the moment in many states as to whether institutions for the mentally retarded should be administered exclusively by superintendents with a medical and often more specifically a psychiatric background, or whether different professional backgrounds are compatible with the function of such a superintendent. In a recent debate in which he favored medical superintendents and therefore advocated a change in the institution's name to "hospital," a medical superintendent said with reference to legislators: "When they think of a colony or home they think of housekeepers or caretakers, but when they think of a hospital, they think of physicians." The defect in this statement is that it does not sufficiently take into consideration the fact that a medical superintendent may greatly improve the medical services but by the same token the educational and rehabilitation facilities and services may be severely neglected. This is brought out very clearly in the statement by contrasting the physician with housekeepers or caretakers, scarcely a comparison a nonmedical person would have made. Actually this very important debate as to the need for medical superintendents encompasses two quite distinct problems: the first one is to what extent medically oriented institutions should or should not be administered by a nonmedical administrator. This is an issue also in many general hospitals in the community and in our universities. There are appreciable factors on either side of this controversy. The other problem seems to me of far greater importance. If we will develop, as I have suggested earlier, institutions specializing in the education and training of mentally retarded individuals who do not require nursing care or continuing medical observation and guidance, then indeed there is ample reason to raise the question why such an institution should be administered by a physician inexperienced and unacquainted with the educational

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and rehabilitative functions which form the main purpose of this type of institution. In other words, it seems to me that the heated arguments as to what kind of superintendent should be selected will become far less significant once we have smaller institutions diversified in accordance with the type of program required to serve the particular type of patients assigned to such institutions. One final comment needs to be made in this context: In some of our larger states a very respectable career system has been developed for the medical personnel in mental retardation institutions, with salaries sufficiently high to attract and keep good personnel. If there is added to this a liberal program for educational leave and good and stimulating direction from a central state department, we indeed have a sound basis for medical staffing where it is needed. But unfortunately there are many other states where the medical staff is poorly paid, where there is no direction from a competent central department, no incentive for advanced training; indeed where there is hardly a medical journal in sight, let alone the specialized literature about new medical and psychiatric advances in our field. Therefore, whenever the issue of medical or nonmedical superintendents is brought up there is a need to inquire rather specifically what kind of medical personnel is employed under what kind of circumstances. I wish it were possible for me to relate in detail some of the thinking that is developing on the part of our progressive leaders in the field as to the specific aspects of programing for residential care. However, I will restrict myself to some general observations. First of all, the institution of the future must no longer be looked to as a catchall facility, a stopgap for all and sundry deficiencies in community planning. It must become a facility in its own right with a specific purpose of its own. When I say that the over all responsibility of such an institution is the development of the child or adult resident's fullest potential, I might easily be accused of making a trite statement. But do present ward programs actually do so? Just a few hours of observation on any one given ward will indicate that failure in achieving this purpose is

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by no means merely due to the inadequate present staffing but certainly as much to the mass housing, mass feeding, mass recreation (if any), and all the other negative attributes of traditional institution management in our field, so that it is often sheer mockery to speak of development of the person's fullest potential. Certainly the institution of the future must take cognizance of recent findings both here and abroad regarding the possibility of a distinct upward movement in the performance level of many mentally retarded in their daily living activities, once a favorable and stimulating climate is provided. Thus, the institution will have to develop a meaningful program for all types and all ages of its residents and will have to rely on a highly skilled program staff, adequate enough in numbers, to provide continuing and effective guidance of the ward personnel. In our medically oriented institutions we shall need in the future a far greater pediatric influence and less domination by the psychiatrist, that is to say, a more diversified medical program including a far greater interest in a program for specific physical therapy. On this point, too, I am regularly challenged with reference to the existence of such specialized services in the institutions under discussion. T h e question, however, is not whether one or more pediatricians are listed on the institution's roster. T h e question is to what extent they actually do have opportunity for continuous adequate pediatric practice on behalf of the institution's residents. T o have one physical therapist in an institution of almost two thousand patients is certainly better than having none at all. But it hardly can be claimed that the institution as such has a program of physical therapy for those of its two thousand charges who need it. I would like to refer once again to the quality of medical services in relation to specific programs. Let me briefly make my point by citing an example: Recently in a Midwestern state a small T . B . sanitarium that had been running at low capacity was relieved of its remaining T . B . patients and immediately thereafter received a group of adolescent girls from the state institution for the mentally retarded, all crib cases. Within an astonishingly short time

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the medical and nursing staff of that small institution achieved most remarkable progress with quite a number of these girls in terms of such elements of self-sufficiency as feeding, sitting up, etc. T h e point of my story is, of course, that this staff was not oriented to mere "custodial" caTe in its old-fashioned sense. T h e y were attuned to treatment, to therapy, to doing something for their patients' individual well-being and ability to operate. And it took them no time at all to recognize that with their new charges the first order of business was to help them toward a greater independence in life, no matter by how modest a degree. Let this one example suffice to make my point that above all else what we need in the institution of the future is not just a different orientation toward the patient but an opportunity to act effectively on it. But a new medical orientation meets only one of many needs. Another is for a new attitude toward general patient management. There is an urgent need to bring to our institutions for mentally retarded children knowledge of good common child care as practiced in many of our good children's institutions throughout the country (and I emphasize the word good because obviously not all of them could serve as an example). T h e r e is no reason whatever to assume that good child care practices, modified to be sure by their specific needs, cannot be applied to institutions for the mentally retarded. However, there is no doubt that this will mean a radical departure from the now traditional patterns of mass care from which we have liberated ourselves in only a few instances in our field, and even there only to a partial extent. One of the most serious problems facing us with regard to planning for the residential facilities of the future pertains to the building program itself. T w o and a half years ago the N A R C Board of Directors adopted the following policy statement: "Future planning of state institutions should include plans for housing no more than 1,500 persons in each institution and plans for establishing each such institution close to a population center within each state, preferably those centers in which there are universities or medical schools." Please keep in mind that this

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was a policy statement dealing with the here and now. My topic today calls for a look at the horizons of the future. From that vantage point I have no hesitancy in predicting that the institution of the future, though unfortunately the rather distant future, in most cases will need to be distinctly small and should not exceed 500 to 700 residents. This parallels the considered opinion of mental health leaders, both in this country and especially abroad, and it is interesting that already twenty-five years ago American prison wardens came to the conclusion that this was an optimum size for institutions where the main weight rested on the personal relationship between and among the staff and the residents. Within these small institutions of the future we can expect to see radically different building design: no longer storage places but buildings of functional design. There is some belief that functional design has already been an objective of our institutional architects. However, I shall insist that in the past we have used this word functional as equivalent to smooth running of the institution, while in our present context it should be used in relation to the needs of the individual residents. Even our relatively new and progressive institutions can learn in this respect a great deal from our friends in Europe, particularly in Holland and in the Scandinavian countries. I have recently visited some brand new buildings in state schools for the mentally retarded. Each time I have been shocked at the lack of imagination displayed in the design, at the gross neglect of features facilitating supervision of the residents, at the continued insistence on mass housing as against smaller groups which w o u l d make possible a more i n d i v i d u a l

approach,

and

finally at the lack of color. While we continue to build so-called cottages, housing from 50 to 100 people and more, the Scandinavian countries think of units housing from 12 to 15 residents. While we are considering a dormitory housing not more than 24 to 32 patients a major advance, over there they have "dormitories" with 5 to 7 children —and even those divided by half-high partitions providing some degree of privacy.

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I made an interesting observation recently. It came to me during my recent trip when in some state institution employees quickly slammed the door in my face because a few children were there in a bathroom in the nude. Both in Norway and Denmark, I found some of the more severely retarded happily playing outdoors in the nude with charming young attendants sitting nearby, and nobody rushed to cover up these children when visitors came. But if you look at the housing afforded these children, you see a strange contradiction to this conduct: In Norway and Denmark everything possible is done to individualize the housing facilities and accommodation for these children, to give them places where they can store a bit of their property, to make them feel there is somewhere a corner that belongs to them, to bring color into their life. In many American institutions, however, while they go to great length to cover the nudeness of the bodies of these children, their life as such is denuded of much that is human, of much that distinguishes the human being, by virtue of his individuality, from other beings. Thus, in countries where there is less to work with financially and materially, more is being accomplished simply by imaginative planning and careful consideration of the needs of the individual human being. I was greatly interested to see that one of our most progressive states recently conducted several extremely detailed time studies of the actual life on the ward as reflected in the activities of the ward personnel. This is a most encouraging development because surely from this type of specific information we will gain valuable guidance as to the fashioning not only of future programs but of future buildings. There is only one caution and a very important one: we cannot be content merely to improve present procedures; we must realize that we have to inject those ingredients of good care which at the present time are so sadly lacking. Under the leadership of the National Probation and Parole Association our juvenile detention homes have developed interesting and useful architectural patterns which vary sharply from the traditional buildings. There is no reason why we should not

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insist that similar imagination be shown in the building programs for the mental retardation housing of the future. For my final comments, let me refer to a different type of personnel problem than I covered earlier, namely the role of the volunteer and of the parent. I am aware of the great resistance many of our superintendents have had and still show toward effective utilization of volunteers. It is my firm conviction that the institution of the future will make far more use of volunteers, not just in play and recreation activities, but also for assistance in ward service (as many of our general hospitals have done for a number of years now). Volunteering for service has become part and parcel of the American way of doing things, and I am happy to say that we already have a m o n g our institutions today some excellent examples of how institutional programs can be enhanced by utilizing volunteer manpower. Furthermore, I predict that among the volunteers, we shall find in those days to come parents of retarded children. A n d here again we already have seen some outstanding examples, particularly in the crisis d u r i n g the 1957 epidemic of Asiatic flu. Certainly the institution of the future will welcome the parents as a partner and not restrict them from visiting, from correspondence, and from the freest possible access to the institution's facilities. In this regard I am reminded of the parallel shift in the attitude of the general hospital toward the visiting parent: here, too, parents were seen as the enemy, the disturbers of peace and routine, and yet in our most progressive hospitals we now allow parents free and unlimited visiting privileges and even the privilege of sleeping overnight in the bed next to their child. T h i s is no more a revolution than what we are aiming at in our institutions. In discussing the relationship between parents and the institution of the future, I must refer also to the function of the parent association. If we are to achieve some of the goals I have set forth here today, it certainly will be essential for the parent associations to develop more imaginative programs designed to improve institutional care in more tangible ways.

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Let us by all means continue our programs of benevolence— the birthday parties, the wading pools, the bus trips, and even the TV sets, although I would like to question whether in some situations we are not actually adding to the discomfort of the more sensitive of our children when the one and only dayroom available to them is filled from morning to evening with the blaring noise of the television set. However, we certainly need to go far beyond this type of benevolence. The parent associations must interpret aggressively to their friends in the community and to the legislators the needed new programs. They must see to it that state departments initiate significant research programs in the area of management. They will need to fight the tedious and long-range fights for better civil service conditions. They must be ever willing to search actively for new ways in residential care, working closely with the experts in the field. In short, we ourselves must be as ready to adjust to new patterns as we expect the institutions to be to who we entrust our children. Some few of our groups have already readjusted their sights, undertaking projects concerned with some of these long-range goals. It is on the areas of studies and research that we must concentrate our efforts. Nowhere else in public administration in our country do we have an expenditure year after year of so many hundreds of millions of dollars without even the rudiments of a research program essential for sound and economical planning of these expenditures. Research in problems of management, of residential care, including physical plant and equipment, should be given highest priority. I do not know of a single comprehensive, controlled study concerning residential care of the mentally retarded. I have referred only to public institutions in my comments, but let me emphasize that I see a most significant role for the private institution as a pace-setter for the public facilities. Private institutions can test new modes of treatment, new building designs, new patterns of staffing. They can demonstrate, and they can afford the freedom of subjugating their entire program to such a project. But let me also underline most strongly that this implies

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that private institutions need not be able just to compete with public facilities, but instead must be able to command better staff, better housing, better equipment, and generous financing. But what can we do about it all? At the Mid-Century White House Conference on Children and Youth, Dr. Benjamin Spöck was asked this question with regard to the causes for community neglect of children's needs. May I close with his words because they seem to provide the answer for us: "There are two faults. We who know something about children's needs don't speak up with enough conviction when questions of social services, welfare, social security are being considered. We also have failed to carry out controlled studies, investigations, and convincing demonstrations to prove to others that our solutions are worth-while, even economical."

8

The Lost Years Presented at the Third Annual Convention of the Canadian Association for Retarded Children, Montreal, September 15, i960 We are facing broad challenges in every area of the care of the mentally retarded, but nowhere are these challenges harder to meet than in our institutions. The reason for this is twofold: institutions are built of brick and mortar, and an unwieldly, outdated, three-story, mass housing monstrosity of a building just continues to sit there as a road block to progress. Compare this with the situation in the public schools, where obstacles such as an outdated curriculum, inadequate teacher training, and inferior testing programs can be remedied in much shorter time and with much greater ease. Secondly, unfortunately most of our institutions for the retarded are very large, hence any changes such as in staffing, for instance, require a major effort and very considerable funds. I make these points because as one who has spent many years in institutional work I am well aware of the difficulties facing the institutional administrator, and I am also well aware of the tremendous progress that has been made in spite of these obstacles in the thirty years since I first became acquainted with a mental retardation institution. Some of the matters I will be discussing here may appear to you as too far-fetched, too remote from the realities of today. However, institutional planning is a slow and cumbersome process and many of the institutions being built today are outdated by decades before the plant is completed. Even considering that bureaucracy in Canada may not be as encrusted and sluggish as that in the United States, I am sure I

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need not detail for you how difficult it is to get public funds appropriated for structures that deviate substantially from the pattern to which state architects and appropriations committees have been accustomed. The institution of tomorrow has long since been on the drawing boards. We must turn our attention now to the more distant future if we want to effect some definite changes, long overdue. With an understanding then of the real progress that has been made in institutional work in our field, but with our eyes on the future, let us turn to the specific subject of this paper: the lost years of the institutionalized trainable child. Several months ago I visited a new mental retardation institution in the United States. I saw attractive buildings with a fine program for the higher grade, so-called educable child. There was an excellent and extensive educational plant with classrooms for academic, vocational, and home-making instruction, and a very fine activity program provided stimulation during leisure hours. However, when we came to the cottages for the younger, more severely retarded, so-called trainable children, we found them sitting and lying on the floor in a large dayroom with a minimum of toys and equipment. Subsequently I learned that there are storage closets full of toys but it was found "too difficult" to put them to use. Windows in those buildings were set high because, I was told, the children might damage them or smear them. This striking differentiation between these two groups of children can be observed not only in a good number of other institutions but also in many community programs. Indeed, one of our most distinguished leaders in special education, Dr. Cruikshank, of Syracuse University, dismisses the entire group of trainables from any consideration by the public schools because he insists they are incapable of making a contribution to society, and hence are not worthy of the educator's attention. It is at this point that I must respectfully enter a disagreement with Dr. Rosenzweig, whose excellent address yesterday I not only listened to with great interest but have since read and reread with profit. Dr. Rosenzweig emphasized that three separate, complete

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programs seem to encompass the needs of almost all retarded children, and then he lists the educable, trainable, and custodial. Let me first state that I am most vigorously opposed to the term "custodial." Language has meaning and conveys a mental picture of things and ideas, and I need only ask you what picture comes to your mind when someone mentions to you the term "custodial institution." This is a quite respectable term, as well I know, having been a custodial officer in prisons and correctional institutions for delinquents, but it certainly does not convey the picture of nursing care and of the limited but significant training of which so many of these most severely retarded individuals are capable. However, much as I admire the leadership Dr. Rosenzweig has given in our field, and much as I concur with most of his findings and proposals, my major disagreement pertains to his strong affirmation of the validity of the three groupings. I will readily admit that five or six years ago the introduction of the concepts of "trainable" and "educable" was a great step forward in our effort to improve educational opportunities for the retarded. Yet when one follows educational studies and proposals of recent years one finds ample evidence that the educators themselves increasingly reject the original sharp dividing line between these two classifications without, however, being able to agree on a specific alternative. Some feel the need for designating a middle group of loweducable and high-trainable and others want to shift the trainable group to an approximate range of a 40 to 60 I.Q. From several European countries comes evidence that children originally assessed as more severely retarded can show a very substantial improvement, changing in our terms from trainable to educable. Findings of this nature were reported at the proceedings of the WHO-sponsored European Conference on Mental Subnormality which took place in Oslo in 1958, although we in North America have paid far too little attention to very significant work that England, the Netherlands, and the Scandinavian countries are doing in this field. Unfortunately by introducing in the educational realm the terms "educable" and "trainable" we have merely helped to rein-

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force the old classical division between idiots, imbeciles, and morons which still dominates our institutions, and which denies the imbecile or trainable any substantial potential for growth. Yet the significant study by Gerhart Saenger, entitled The Adjustment of Severely Retarded Adults in the Community, the experience of a variety of sheltered workshops, and, I might add, if you look closely enough, even the experience of quite a few of our institutions demonstrate how much we have underestimated the capacity of those classed as trainable or imbecile. But the problem of the unsuitability of the present classification scheme which has become an institutional caste system is only one of many obstacles to progressive planning. Another one relates to the characterization mentioned yesterday of the trainable, namely, that "at maturity they will perform like children of four to eight years." This is, of course, precisely what has been accepted in many of our institutions and this is why they have no hesitancy in referring to grown-up men and women as boys and girls and subjecting them routinely to treatment appropriate for young children. But does it really make any sense to say that the 26-yearold Mongoloid young woman whom I observed manufacturing an attractive dress on an electric sewing machine in a sheltered workshop in The Hague, Holland, is performing like a child of six years? Her Binet I.Q. was 35. She had practically no speech and bore the physical characteristics of the Mongoloid to a marked degree, yet she worked an 8-hour day and commuted alone by streetcar. I am mentioning her because it was this particular case that brought home to me the folly of our traditional institutional regime on the one hand, and of Dr. Cruikshank's educational theory on the other. But if you want further substantiation consult the Proceedings of last year's Canadian Association for Retarded Children Conference and on page 25 you will find specific references in a pertinent speech by your own Dr. Richardson, whose work in mental retardation has spanned three continents. We have indeed allowed to a marked extent years spent by the more severely retarded in our institutions to become "lost years,"

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because traditional prejudice and prejudgment have kept us from recognizing and developing the potentials of these individuals. T o be sure, not all "trainables" or, as our clinicians would say, "imbeciles" by any means are capable of what we might call sustained productive work effort, and this is the very reason why I object to the continued use of this rigid classification scheme. Let me now turn to some specific points. Some words first about institutional architecture, again with particular emphasis on the group we are discussing here today. Dr. Rosenzweig quite correctly called attention to the fact that a real hazard for the retardate in the community is social isolation. For the retardate in the institution the exact opposite would seem to be the case, at least as far as the more severely retarded in United States institutions are concerned. Theirs is an unmitigated herd existence, with no escape from the large group to which they are assigned during waking and sleeping hours. Therefore let us insist on small buildings with perhaps two dormitories of 14 to 16 each. As an absolute minimum we should insist on dormitories that provide, through partitions and bedside tables, a minimum amount of privacy, a sense of individuality. However, there is no reason why we cannot refine our clinical evaluation to make possible appropriate assignments to smaller groups of residents. This in turn would enable us to develop some buildings with bedrooms for smaller groups rather than the usual dormitories, a problem that should challenge the imagination of our architects. From time to time the point has been made by educators that certain of our retarded individuals must be protected from overstimulation and that therefore schoolrooms for these individuals should be furnished and organized accordingly. I do not wish to espouse here the theories of Dr. Alfred Strauss and his associates but it is astonishing that so little attention has been paid to the damaging psychological effects we must be inflicting on some of our residents with the strains of congregate living in our large housing units. As I travel year after year from institution to institution the standard fare is the big dayroom with benches (and in the luxury institutions, tables and chairs) and a T V set loudly

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blaring away. For the sensitive youngster, for the child who is upset, there is, in the words of the spiritual, "no hiding place down here." I am particularly chagrined in such situations when I see that in another corner of the building there is the dining room locked up after meal hours and not available as extra living space. Our juvenile detention homes have long ago demonstrated how by intelligent use of safety glass partitions one employee can supervise different groups in a "noisy" and a "quiet" dayroom. Should the dining room have a serving steam table it would not be difficult to have a folding partition which shuts off the serving area and frees the dining room as extra living space. Perhaps I should call attention to the fact that I have not spoken of "homelike atmosphere." This to me seems to be an unreasonable demand for most institutional situations, but certainly the plea for privacy and a degree of individuality should not be judged as unreasonable. In this connection let me make a comment on food service. I have seen some institutions where food was served in the cottage in an attractive way. Still, with 25 to 35 youngsters in the dining room this is hardly "home style." Recently I had occasion to see some new central dining rooms to which the different housing units came for their meals and where service was provided cafeteria style in attractive surroundings, on small tables seating four with freedom to choose a table regardless of one's group and with boys and girls, men and women, thus sitting together. Nobody made any pretense about its being homelike but it was totally d i f f e r e n t f r o m the old regimental institution mass feeding and

similar to the situation one would meet in any cafeteria "at home." I am not saying that the one method is superior to the other: there are advantages in both, underlining that there is always room for quite different solutions of a given institutional problem. Indeed, there are institutions which use both methods —centralized dining rooms and individual cottage feeding, as seems best suited for the type of patient. Just a word about the size of institutions. T h e state of Con-

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necticut has just declared that two large institutions are enough; from now on they will build smaller regional facilities, immediately adjacent to or right in a city. Other administrators feel that a large institution of 1,000 to 1,500 beds is needed to develop within the institution the full complement of professional help from all the medical specialties, psychology, education, rehabilitation, needed for a comprehensive treatment program. I personally consider 1,000 residents the absolute upper limit for anything I would wish to plan but would agree that much depends on the institutional plan of organization. What sort of an institution do we want and who should run it? At CARC's last convention Dr. Jack Griffin, Division General of the Canadian Mental Health Association, raised the question "Is Mental Retardation a Mental Health Problem?" His discussion brought out that it was certainly that, but it was also an educational problem, a problem of vocational training and rehabilitation, a neurological problem, and definitely a social problem. In a similar vein let me ask here today: "What is the mental retardation institution? A school? A hospital? A nursing home?" The Group for the Advancement of Psychiatry last year released a report insisting that what we need in the field of mental retardation are psychiatric centers for children. This is true if one clearly understands that such centers are but one of many types of residential care we need for the retarded. Yet for the Group for the Advancement of Psychiatry the answer is clear and unilateral: the psychiatrist is the key expert in mental retardation. This claim is quite unjustified. We do, of course, have residents in our institutions who in addition to their long-standing mental retardation have acquired a psychosis, a mental disease not organically connected with their original handicap. We have residents with a type of retardation that typically or at least frequently involves behavior disturbances. And, finally, as has been brought out by prominent psychiatrists themselves, our institutions have created behavior disturbances in residents, by the very type of program (or, better, lack of program) offered them. But the severe Mongoloid child with associated physical handi-

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caps is not a problem of psychiatric care, nor is the hydrocephalic child or the early detected Phenylketonurie child. These are problems of pediatrics with all its subspecialties such as pediatric neurology, and my efforts during the past year have been directed at recognition by the public authorities, the professional associations, and the citizen groups of the most urgent need for greatly expanded medical departments in our institutions for the retarded, directed by competent pediatricians, and staffed with an adequate number of related specialists, in order to initiate an aggressive medical rehabilitation program. Some small beginnings of such a program I have been able to observe in a very few institutions— but it stands to reason that one physiotherapist for an institution with 3,000 patients, while surely to be welcomed, is at best a mere "teaser." Again, let me be clear: I do not mean to imply that all mentally retarded children need such a comprehensive pediatric program or else will suffer serious damage. But there can be no question that a very considerable number of our trainable children in the institutions are doubly handicapped because they did not get pediatric restorative care to the extent our medical knowledge of today makes possible. T h e extent to which the life span of the Mongoloids and indeed of all the severely retarded has been lengthened in recent years is now common knowledge and underlines the contribution medicine and in particular pediatrics has to make. It must be stressed that in this connection the focus of the institutional program for any one individual may change to a considerable extent. It may be medical in the early stages, with emphasis on physical therapy, orthopedic surgery, or some other procedures, and thereafter may become primarily educational or else problems may develop requiring a psychiatric setting. Some people have advocated that it would be more efficient and more economical to have smaller, specialized institutions—for instance, separate pediatric hospitals for mentally retarded children requiring extensive medical care or residential schools for those who for various reasons cannot live with their families but need

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primarily an intensive program of training and education. Others feel that the large multiple-function institution will remain indispensable. The main point I would want to stress here is that the institutional structure should be such as to facilitate meeting the various needs of the various types of residents. One thing is certain: the old-style institution fashioned after the mental hospital with the rigid hierarchy from medical superintendent to ward physician to charge nurse to attendant has outlived its usefulness, if indeed it ever had much in the field of mental retardation. For this we have not only some interesting sociological studies but the testimony of several eminent medical people, some of it published in the American Psychiatric Association's own journal, Mental Hospitals. Let me be quite clear: I do by no means advocate that we should turn over the leadership of our retardation institutions to educators, for instance. T o be specific, I am not so much concerned with the position of superintendent as with the broad structure of the institution's program, which, it seems to me, falls into three functional areas: first, the diagnostic and clinical program under a medical director; second, the training (and domiciliary) program, which should be directed by a person with professional background in this area; and third, the business administration. T o the extent that social workers and psychologists contribute to the diagnostic process and also participate with the psychiatrist in the treatment of disturbed patients, they should be in the clinical department, which of course would also carry the responsibility not only for hospital and dispensary but for all units where we deal with a nursing program, such as the so-called infirm cottages. T h e training department, on the other hand, should have full control not only of academic, vocational instruction and recreation but also for what is referred to as either ward supervision or "home life." This type of institutional organization would ensure as much the effectiveness of the medical program as of the training function. In turn, the specific professional background of the administrator would be less important.

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One may ask where the boarding home program would be assigned. This question raises a very important issue as we plan for the trainable retarded who will need different types of care at different stages of his life career: Will the institution be the focal point of planning and as such have a foster home program as an extension of its residential program or will the focal point be a community-based agency which then would handle foster care both as a substitute for and a sequel to institutional care? From what I have just outlined it should be clear that I attribute the "lost years" of the trainable child to the lack of an adequate functional approach in our institutions, to insufficient attention to the widely differing individual needs of the resident. This is exemplified not just in the problems of professional leadership we have discussed but also in the type of "rank and file" working force institutions utilize. T w o years ago at this Convention a representative of the psychiatric nursing profession strongly made the point that only persons with her background and not just general nurses could adequately staff mental retardation institutions. This, of course, one cannot agree with. T h e strikingly different needs of the various departments of our institutions require personnel with correspondingly different background and training. In some areas we need the psychiatric nurse, in others the pediatric nurse, and in many of the units where we have the trainable children we need people with experience in child care, not nursing. Where do we find such people? T h e y may come from good, small children's institutions in the kindergarten and nursery school field, or we may have to train them ourselves. This morning Dr. Rosenzweig gave us a most detailed and lucid picture of the training needs of the severely retarded child. Obviously, even the best of institutions will have difficulty in delivering the full measure of his charge. I have tried to indicate here some of the basic changes we need to effect in the structure and philosophy of our institutions, so more of the "lost years" can be turned into years of gain and growth for our severely retarded children.

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The Team Approach in Daily Care and Management Presented at the 1959 Spring Conference of the Training School at Vineland, New Jersey, May 11-12, 1959 T h e fields of general medicine, psychiatry, psychology, education, social work, and speech and hearing are all well-established areas of endeavor of unquestioned significance in the field of mental retardation and with clearly circumscribed, long-established professional identity. But who represents "daily care," along with medicine, psychology, and the other areas? Who labors in the vineyards of daily care for the mentally retarded? The institutional attendants? Certainly! The nurses? We all would agree. But what about the educators, for instance? We need only to think of the operation of a nursery school or general nursery center to visualize how definitely the teacher there is tied in with daily care, such as toileting, feeding, nap taking. And what about the social worker or the psychologist? Do we not find them frequently in positions where they have immediate responsibility for supervising daily care programs? Is, then, a "daily care and management" expert akin to the professional image of the home management specialist from the broad field of home economics, or the home demonstration agent of the Department of Agriculture's Extension Service? A look at our present facilities, whether they are of the residential or community type, would convince us that there has not yet been developed such a well-defined occupational (or professional) image related to daily care and management for the mentally retarded—or, for that matter, for other types of exceptionality. Whether such a professional image is feasible or not should be

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a most appropriate topic for discussion at this conference. Certainly there is much basis for arriving at the assumption that the very distinct deficiencies in daily care in our large institutions are due to the fact that while we have payroll positions directly related to such daily care and management, these payroll positions (in distinction to those of the nurse, the educator, the psychologist, etc.) are not tied to a well-defined body of knowledge, nor to established procedures directly related to such knowledge, nor to a formal course of training and experience, based on the two foregoing factors. However, at this point we need to backtrack lest a serious misunderstanding arise. Desirable as it would be to develop the body of knowledge, the system of procedures, and the course or courses of training that would provide a sound framework for professional, paraprofessional, or nonprofessional specialists in daily care and management, we would not thereby gain the over-all results we must seek toward providing adequate personnel resources in the care of the mentally retarded. Rather, as indicated earlier, the teacher, the recreation worker, the therapists, and various other professional specialists all have an active role to play in daily care and management as participants or front-line combatants and cannot, as they work with the retarded, be limited to the indirect or even passive role they usually play in matters of daily life routine. The reason for such active participation by these professional workers lies in the nature of the problems the mentally retarded child presents. First of all, his learning patterns are such that simple matters of daily living which the average child absorbs with great ease and often imperceptibly are accomplished by the retarded child only with great difficulty and with constant repetition in daily application. Hence the professional person cannot escape the necessity of working with such a child in this manner. Secondly, more recent findings as summarized so well by Sarason and Gladwin in the volume Mental Subnormality have highlighted a particular problem we are facing with the mentally re-

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tarded: the inadequacy of most formal testing procedures (at least with our present state of testing techniques), in that so frequently the life performance of the mentally retarded deviates grossly in some unexpected area from what the test results have indicated. T h i s means that the professional worker must have ample opportunity to observe the retarded as they perform in their normal everyday life, and that is best accomplished by acting as a participant observer. Besides the attendants and house or cottage personnel and those of the present professional staff immediately related to the dayby-day living, others are candidates for the team we are here discussing. More and more there is recognition that parents of retarded children can responsibly participate in the care agencies provide for their children, and if they can d o so, then we should look to them as potential members of the team. T h e y can be of service in exchange of information, in joint planning for the changes in care program, in coordination of home and school or agency efforts, and many other areas. T h e fact that there are parents who do not seem to b e able to handle adequately such participation should not delude us into denying this opportunity to other parents, because in essence w e would thereby deny ourselves a source for strengthening our program. Finally, throughout the country there is noticeable an everincreasing activity on the part of volunteers in many retardation programs. T h e s e volunteers assist in special school activities which require extra staff or extra supervision, they arrange play and recreation activities in the institution and the community, and in many other ways they enrich the daily life of the retarded with simple but meaningful experiences. T h e s e contributions may appear to have little weight compared with the expert diagnosis of the psychologist, yet they b r i n g an important personal quality to the work with the mentally retarded and one for w h i c h we can hardly hope ever to command sufficient staff resources. If we then take another look at the whole array of this team, it is striking that its greatest weakness lies in the g r o u p represented

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in largest number: the attendant, who with our present limited programing spends more time with the retarded in the institution than any other staff member. Improvement of pay scales—long overdue—and establishment of comprehensive in-service training programs will provide only partial remedies in this situation. A major impediment rests in the inadequated and often almost nonexisting communication between the professional staff and the attendant. Even where communication exists it often is but a one-way downward street: the vital observations which the attendant makes (or should be able to make if properly guided) are all but lost in the ponderous hierarchical system of most large institutions in spite of efforts of enlightened superintendents to promote a greater sense of staff participation. In other words, it is not enough to talk about the team concept. We must ask ourselves candidly whether the present social structure—it might even be called more directly the power structure— of our facilities, be they institution, community clinic, or public school, actually leaves room for the practical application of our theoretical team concepts. A team approach that merely provides for people to listen to each other's views falls far short of its goal. The question to which we might well address ourselves is whether we know enough to produce team action when the participants show as wide a range of background, status, and motivation as one encounters among those concerned with the daily care and management in our facilities for the mentally retarded.

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Medical Needs of the Displaced Retarded Child Presented at the Forty-third Ross Conference on Pediatric Research, June 1 1 - 1 2 , 1962, New York City Almost a decade has passed since Dr. Grover Powers, in accepting the John Howland Award, addressed the American Pediatric Society on the topic " T h e Retarded Child and His Family as a Challenge to Pediatric Practice, Research, and Education." In introducing the topic, he said: " I offer no apology for my subject. Here are major problems, perhaps as old as human life itself, but still too low on the totem poles of medical respectability and scientific concern. We have recognized the problems, but too many of us have done as the priest and Levite in the ancient parable— we have 'passed by on the other side.' " 1 Later in his address, after he mentioned Itard and Seguin, he said: "There are many other great names associated with the problems of mental retardation—but not really 'many' considering the magnitude of the subject, its long recognition, and in comparison with the more numerous students of many other and less extensive and urgent problems." Shortly after he gave this address to the American Pediatric Society, Dr. Powers became the first Chairman of the Scientific Research Advisory Board of the National Association for Retarded Children, and assembled what was the first broadly interdisciplinary body of scientists engaged in the specific task of research planning in the field of mental retardation. Subsequently, this Scientific Research Advisory Board recommended to the National 1

Grover Powers, John Howland Award Address, Pediatrics,

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Association for Retarded Children its first major research project, which was directed by Dr. Richard Masland and resulted in the publication of the book Mental Subnormality. This is not the place to relate the many ways in which Dr. Powers and his Board effectively stimulated not only research but also clinical practice in the field of mental retardation. Suffice it to say there never can be sufficient appreciation for what he has done for the field of mental retardation. There were, of course, many other parallel developments, most notably, in our context, the splendid work of the United States Children's Bureau, which has used so very effectively its maternal and child health programs to stimulate effective action on behalf of the mentally retarded in all the states throughout the country. Since my own working experience in an institution for the mentally retarded goes back almost twenty-five years, I am well aware of early pioneers in the field of mental retardation, both from the field of pediatrics and from the field of psychiatry. But I am also keenly aware of the slowness of our rate of progress, and of the continuing neglect of the field of mental retardation in spite of the leadership provided by Grover Powers and others. Therefore, the more I thought of the at first rather surprising title of this conference: "Medical Responsibilities for the Displaced Child," the more I realized how very much in point this expres sion is when it comes to the mentally retarded. They are not only displaced from their homes, they have been displaced from medical care, as you shall see; educators have displaced them and maintained that training them should be somebody else's responsibility; and even when we placed the displaced child in an institution, we displaced the institution as far away from the community, as far out of our sight, as was feasible. A discussion of the medical needs of the displaced retarded child requires a preliminary clarification of the term "retarded." The term "retardation," as used in this paper, refers to subnormal general intellectual functioning due to causes originating during the

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developmental period, and accompanied by a related lack of social adaptation. About g percent of the population, or close to 5% million people, would be covered by this definition and would be considered mentally retarded. The term "subnormal" rather than "subaverage" is used here for a semantic reason that needs explanation: subaverage intellectual functioning, strictly interpreted, might be presumed to mean anything below an intelligent quotient of 100. Or, with a somewhat broader interpretation, taking the average to extend from an I.Q. of 110 to an I.Q. of 90, anything below that level. However, the generally accepted figure of 3 percent does not include the group known as "borderline," "dull normal," or, in educational terminology, "slow learner." In this respect, this presentation does not follow the Manual on Terminology and Classification in Mental Retardation prepared by Rick Heber for the American Association on Mental Deficiency in 1959.2 Since this AAMD classification uses as upper-demarcation line of mental retardation the statistical unit of 1 standard deviation, it thereby includes a population with an I.Q. on the Stanford-Binet of 83. Including these individuals would double, if not triple, the number of individuals designated as mentally retarded and thereby so broaden this term as to severely limit its usefulness. On the other hand, the American Handbook of Psychiatry, published in the same year that the American Association on Mental Deficiency issued its new Manual on Terminology, states that 1 percent of the population is mentally deficient.3 This figure represents a much more narrow concept of mental retardation than is currently in use in most scientific work and governmental operations. It harks back to a differentiation which the World Health Organization introduced in 1954 as between mental deficiency encompassing those types of mental subnor* Rick Heber, A Manual on Terminology and Classification in Mental Retardation, Supplement to American Journal of Mental Deficiency, Vol. LXIV, No. s (September, 1959). • George A. Jervis, "The Mental Deficiencies," American Handbook of Psychiatry (New York: Basic Books, 1959), p. 1*89.

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mality which have their origin in biological factors, and mental retardation encompassing mental subnormality due to cultural, psychological, and socioeconomic factors. 4 T h e book Mental Subnormality by Drs. Masland, Sarason, and Gladwin, published in 1958, tried to revive interest in this classification scheme proposed by the World Health Organization, 5 but that effort failed and even the American Association on Mental Deficiency, its own name notwithstanding, has decided to use the term "mental retardation" generically applying to the total field. Unfortunately, there is no time for us to go more thoroughly into this most important point of classification and nomenclature, which has so much bearing on the development of facilities and services. Just to indicate the extent of the existing confusion, let me state that within the last three months the authorities in one of the largest and most important states in this country have issued a long-range plan for mental health services in which mental retardation is specifically included in the term "mental illness" and the mentally retarded in the term "the mentally ill." T w o other points merit emphasis within the framework of our topic: a) There has been a marked increase in the life-span of the mentally retarded so that we are dealing with a rapidly rising number of retarded adults in our communities. In other words, while the pediatrician still has what can, justifiably, be called "the crucial role" in the medical treatment of mental retardation, an ever-growing percentage of the retarded is moving beyond the accepted limits of pediatric practice. (One hardly can accept the theory recently put forth that becausc mentally retarded patients are often childlike in their outlook and communication, they should be a continuing responsibility of the pediatrician throughout their life-span.) 6 b) T h e r e is a persistent belief, even among otherwise well-in4

World Health Organization, The Mentally

'954). P· 6.

Subnormal

Child

(Geneva: WHO,

• R. L. Masland, S. B. Sarason, and T . Gladwin, Mental Subnormality York: Basic Books, 1959), p. 5. •Charles H. Carter, Institutional Management of the Mentally Retarded lando, Florida: Sunland Training Center at Orlando, i960), p. 15.

(New (Or-

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117

formed professional personnel in various disciplines, that most of the severely retarded can be found in institutions or, in any case, sooner or later are subject to institutional care. Detailed and exacting statistics show that only two hundred thousand mentally retarded individuals are in public and private institutions in this country (including, by the way, 40,000 retarded individuals who are cared for in hospitals for the mentally ill, for various administrative reasons), a figure that represents only 4 percent of the approximately 5% million retarded in this country. Rates of institutionalization, by the way, differ markedly from state to state. In some states, only 1 percent of the mentally retarded are found in institutions; other states have an unduly large rate up to double of the average. This involves important considerations from a fiscal viewpoint. Figures submitted to Congress by the National Association for Retarded Children would indicate that expenditures properly assigned to the problem of mental retardation, whether from national, state, or local, public or private sources, exceed one billion dollars a year. Of this sum, an unproportionate amount is spent on the 4 percent of the mentally retarded in institutions: 300 million dollars for their care, treatment, and maintenance and an additional 100 million dollars for institutional construction.7 Of the remaining sum, approximately 150 million dollars are spent on publicly and privately sponsored programs of services in the field of education, rehabilitation, recreation, health care, diagnostic testing, etc. In other words, far more is spent for the institutional programs for the 4 percent than for community programs for the 96 percent. Most surprising of all is the fact that conservative estimate indicates that individual families caring for mentally retarded individuals in their homes carry almost half of the entire expenditures in the field of mental retardation. This impact on family finances in this country by the problem of mental retardation has received far too little attention. * Hearings before the Subcommittee of the Committee on Appropriations, House of Representatives, 8yth Congress, ist Session (Washington, D.C.: Government Printing Office, 1961), p. 656. (Statements of members of Congress, interested organizations, and individuals.)

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One final fiscal point merits emphasis: What makes mental retardation such an outstanding problem in the field of public health and welfare is not just the number of the people affected but equally the days of disability which characterize it. An inappropriate disposition in the field of institutional care, for instance, can have in the field of mental retardation lifelong consequences with a most disconcerting cost factor. T o move now specifically into the area where we find the most pronounced displacement of the mentally retarded, namely institutional care, let me begin with a parable: Some years ago in a Midwestern city a child was born to a young couple; he was the sports editor of the local newspaper and she the director of athletics in a girls' school. Both were ardent outdoor fans, so when they found out that their son was born with some severe defects in his extremities, they never took him home. Realizing that the presence of such a child would be socially embarrassing to them and interfere with their family life, they arranged with their pediatrician for the child to be immediately placed in an institution before they ever might develop any form of attachment to him while having him as an infant in their home. Of course this case is not only totally fictitious but improbable in the extreme since I do not know of any facility in this country where one could institutionalize for an indefinite period a child who has physical deformities but does not need specific medical treatment. Yet substitute the words "severe mental handicap" for the words "severe physical handicap" and you will find quite a few people, particularly among the medical profession, who feel that placement of such a child in ail institution at birth is the proper disposition. T h e most outstanding example in this respect is the child afflicted with Down's Syndrome, commonly known as Mongolism. Throughout the country every year hundreds of children with Mongolism are committed to institutional care even though often they are temporarily cared for in nursing homes of some sort or other before actual admission can be effected. Why are these children committed? In many cases, it is on the advice of the family physician or the pediatrician, but in a large number,

Medical

Needs

"9

if not the majority, of cases this advice is not given on the basis of the type of exacting medical evidence which otherwise would be standard procedure on the part of these practitioners. Their judgment here is not based on medical evidence so much as on cultural factors. As one author points out, such physicians feel repulsed by the mentally retarded as does the society from which the physicians come. There is ample evidence on the basis of competent studies that early institutionalization of a child with Mongolism can be and usually is distinctly harmful. A just-published British report of a working party set up by the Paediatric Society of the Southeast Metropolitan Region entitled The Needs of Mentally Handicapped Children (by the way, one of the finest reports in the field of mental retardation I have ever read) has this to say: Recognition of the degree to which the right stimulus fosters growth is responsible for a greatly changed outlook in life for children with severe physical handicap. It is now seen to be right to do as much as possible to liberate the mentally handicapped child from his much more terrible kind of prison, and we have to ask ourselves therefore, in what ways the needs of mentally subnormal children and their families differ from the normal.8 Let me hasten to say here that there are of course children with Mongolism who have such severe secondary disabilities, or whose home situation is of such a nature, that an institutional placement may be necessary (although recent reports have pointed up that only rarely would this be necessary in the years of infancy and early childhood). I think the crux of the problem is that in the case of many of the medical practitioners who urge early institutionalization (and there are many distinguished experts from other professions who agree with that viewpoint), we are dealing with another phenomenon of displacement: the pediatrician's concern for his patient, the child, is displaced by his concern for the family. T h e just-quoted British report makes the important point that 'Paediatric Society of the South East Metropolitan Region, The Needs of Mentally Handicapped Children (London: The Milbrook Press, 196z), p. 4.

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it is necessary to ensure that the retarded children for whom placement is considered are neither denied opportunities of self-development nor become an intolerable burden to their families. As a former state child welfare administrator, I have acquired great sensitivity to this fact that children have basic rights of their own; perhaps their most basic right is that of growing up in their parental home. There are situations of many types which require an interference with this right, but these instances require careful consideration of all factors involved, specifically the welfare of the child along with the welfare of the parents and any other brothers and sisters. Not only the question of timing but also the question of the extent of separation necessary is of crucial importance. For instance, are there available or must we develop community facilities which make it possible for the child to live at home but spend appropriate periods of time in such community facilities as nurseries and educational or rehabilitation facilities? We are dealing here with a phenomenon that is highly unusual if not unique in the practice of medicine. There are many medical administrators of mental retardation institutions who are convinced, who indeed "know," that they are receiving in their institution children with Mongolism who are not only not helped but who are actually harmed by being in the institution. Yet, year in, year out, these administrators continue to keep these children with Mongolism confined (and I am using this term advisedly) in these institutions without so much as an official protest. Where in the field of medical practice would one find a parallel to this situation? Children with Mongolism constitute a large, if not the largest clearly identifiable diagnostic group in our institutions for the retarded. Perhaps the significance of this particular problem of the institutionalization of children with Mongolism, one of the most pointed examples of the displaced child in mental retardation, can be highlighted by the following grossly oversimplified, purely speculative statement: If only 5 percent of our institutional population are individuals with Mongolism who could be cared for

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in the home and the community at half the cost of institutional care (and there are figures available to substantiate this), we would have available in this country half of 30 million dollars or 15 million dollars which, theoretically, could be utilized for the basic maternal and child health services which without doubt are most crucial both in the prevention and in the amelioration of mental retardation. In the March, 1953, issue of the Journal of Pediatrics, the editor took exception to a letter which suggested that early institutional placement of retarded children was decided on without sufficient exploration and in many more cases than seemed necessary." From his own inquiry among colleagues, the editor felt that the writer of the letter had grossly overstated the problem. Yet today, almost ten years later, with all the public education and all the discussion of the problem of mental retardation in professional journals, we still face this problem. Perhaps some of you have noted instances where mass media within the past year have reiterated the need for immediately removing a Mongoloid infant at birth from parental care. A g a i n I would like to refer to the British report because in a very excellent section on counseling it sets forth the principle that whoever counsels parents about their severely mentally retarded child, be he physician, psychologist, or social worker, must be exceedingly well informed about all the facets of the total situation. But the child with Mongolism is not the only example in the consideration of medical needs of the displaced retarded child. T h e r e is a good bit of evidence to suggest that while the diagnostic and specifically the etiological problems of the mentally retarded child have become a point of much interest in pediatric literature as well as practice, these children have been displaced from the on-going pediatric care and treatment which is provided for children not so afflicted. In his address referred to earlier, Grover Powers pointed out in »953: • B . S. Veeder, Editor's Column, Journal of Pediatrics,

>953). 396·

XLII, No. j

(March,

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The children are usually referred sooner or later to specialists of one kind or another and what, one might inquire, is accomplished by the usual medical round of examinations? By and large, relatively little save for diagnosis and prognosis (or confirmation of those already made); these are too often incorrect from lack of knowledge or inadequate because made without the important data which continuing observation alone can furnish. When there is no cure, the doctors sometimes capitulate too easily to therapeutic defeatism, forgetting that the physician is just as responsible for alleviating as for curing; action is just less urgent, not less vital.10 Joseph Warkany, another distinguished pioneer in the field of mental retardation, said in 1957: "It is clear that children damaged before birth must receive the best of care, that they must be helped to live a life as normal as possible and that their defects must be corrected." Parenthetically, one might refer here to one result of the medical profession's relative lack of interest in the more severely retarded, namely the most disconcerting increase of quackery in mental retardation. After parents have been repeatedly faced with rebuffs as they seek medical attention for their retarded child, they will readily turn to the quack. Quackery has become big business and, I might add, international business. Only brief reference can be made here to another aspect of medical care for the displaced retarded child. Repeatedly the suggestion has been made, both in this country and in England, that special mental retardation clinics and treatment centers should be abandoned in favor of general clinics for children with all kinds of handicaps. 11 One might well expect that this will be the ultimate solution, particularly since so many severely retarded children are multiply handicapped, but for the moment there does seem to be good reason to develop specialized facilities, particularly since there is such a dearth of professional personnel sufficiently knowledgeable to direct mental retardation work. u

Powers, Pediatrics, X I I , «23. Samuel Wishik, " T h e Conscience of the Commonwealth" (Harrisburg: First Pennsylvania Conference of the Governor's Committee for the Handicapped, i960), p. 21; Jack Tizard and J . C. Grad, The Mentally Retarded and Their Families (London: Oxford University Press, 1961), p. iss. 11

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The American Association on Mental Deficiency recently published a 192-page Manual on Program Development in Mental Retardation and in this manual the section on "Medical Care and Treatment" occupied exactly 10 lines of print. 12 It is therefore particularly interesting that the British group to whose report I have made reference before gives considerable space to the role of the pediatrician in the treatment of mental retardation and indeed advocates that increasingly children's hospitals and pediatric wards of general hospitals be utilized for the treatment of the very group which has become such a problem in this country in recent years: the severely retarded infant with concomitant severe physical problems. The British point up what has equally been observed in this country, that early attention to the physical needs of these severely retarded children often produces an unexpected considerable improvement in their general level of functioning. It would be foolish to expect that more than a small fraction of the severely retarded will be accepted in children's hospitals and on pediatric wards of general hospitals. Thus it is imperative that we plan for well-staffed pediatric hospitals within the administrative structure of our large state institutions, where the severely retarded child can have the benefit of surgery, orthopedic care, physiotherapy, and the whole gamut of an aggressive remedial program. There is good reason to expect that a fair number of them ultimately can return to their homes. Against this rather disheartening background it is indeed most encouraging to note the strong interest that has developed in the recent past in the American Academy of Pediatrics as far as the problem of mental retardation is concerned. T h e Committee on Handicapped Children of the Academy is developing specific plans to improve the pediatric care of the mentally retarded; results of these efforts will no doubt become evident in the not too distant future as far as community care is concerned. Things are different, however, when it comes to residential care. Here we have the grotesque and paradoxical situation that the " W i l l i a m Gardner and Herschel Niaonger, A Manual on Program Development in Mental Retardation, Supplement to American Journal of Mental Deficiency, L X V I , No. 4 (January, 196«), 83.

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psychiatric profession in m a n y states insists o n m o n o p o l i z i n g control and m a n a g e m e n t of mental retardation institutions a l t h o u g h they themselves p o i n t o u t that intake to these institutions is increasingly d o m i n a t e d by very y o u n g , physically severely d a m a g e d children. T h e s e children obviously need a primarily

pediatric,

not a p r i m a r i l y psychiatric r e g i m e . O n the other hand, the presence of an increasing n u m b e r of severely retarded c h i l d r e n a n d adolescents in p u b l i c schools and day care centers a n d of severely retarded y o u n g adults a n d adults in sheltered workshops, o c c u p a t i o n day centers, or sheltered emp l o y m e n t is p r o d u c i n g n o w a n d will in increasing m e a s u r e prod u c e f a m i l y a n d c o m m u n i t y p r o b l e m s w h e r e psychiatric g u i d a n c e can and must play a crucial, h e l p f u l role. Y e t w h i l e the psychiatrists c l a i m m o n o p o l i s t i c c o n t r o l of m e n t a l retardation institutions w h e r e pediatric p r o b l e m s are increasingly in focus as far as the medical p r o g r a m is c o n c e r n e d , they h a v e shown an a m a z i n g lack of interest in m a k i n g c o m m u n i t y psychiatric services a v a i l a b l e to the retarded and their families, even t h o u g h psychiatric h e l p there is b a d l y needed. D o c u m e n t a t i o n of this p a r a d o x will b e f o u n d on the one h a n d b y c i t i n g the states w h e r e s u p e r i n t e n d e n c y of m e n t a l r e t a r d a t i o n institutions is either n o w l i m i t e d to psychiatrists o r w h e r e such l i m i t a t i o n has b e e n r e c o m m e n d e d ; on the other h a n d , by reviewing the gross neglect of the field of m e n t a l r e t a r d a t i o n

where

c o m m u n i t y m e n t a l health f u n d s are involved. T h e attention to the m e d i c a l needs of the displaced r e t a r d e d c h i l d is greatly h a m p e r e d b y this present definite conflict b e t w e e n the disciplines of psychiatry a n d pediatries, and p o l i t e l y to displace r e c o g n i t i o n of this conflict b e t w e e n professions can

only

aggravate the displacement of the retarded child. B o t h disciplines have to m a k e an increasingly i m p o r t a n t , increasingly m o r e meani n g f u l , increasingly m o r e f r u i t f u l c o n t r i b u t i o n to t h e p r o b l e m of retardation. T h e t i m e has c o m e squarely to face this issue.

Adapted by permission of Ross Laboratories from the Proceedings the 43d Ross Conference on Pediatric Research, 1962.

of

IV. The Retarded Youth in Social Conflict

11

The Problem of Institutional Placement for High-Grade Mentally Defective Delinquents Given at the Sixty-fourth Annual Meeting of the American Association on Mental Deficiency, Atlantic City, New Jersey, May 22, 1940 This paper is concerned with institutional placement problems of high-grade mentally defective delinquents. As it is based primarily on the functioning of a training school for juvenile delinquents and a state school for mental defectives, it considers only those age groups which come within the jurisdiction of the juvenile court; that is, those who at the time of the court disposition were below 16 years of age. T h e study is furthermore not based on any sharp definition of the term "mental deficiency" in terms of psychometric ratings. Rather, the results of this study have reaffirmed the viewpoint that psychometric rating alone cannot be taken as a basis for a diagnostic statement, but rather requires evaluation and interpretation in the light of individual factors of background, social and emotional experience. However, inasmuch as the Children's Court of New York City and the two institutions under discussion decided several years ago that an I.Q. of 70 on the Stanford-Binet or a similar scale should, in regard to court commitments, approximate the upper limit for the institution for mental defectives and the lower limit for the training school for delinquents, the I.Q. of 70 or below was used in selecting the cases for this study from the records of the Warwick training school for delinquents. T h e problem under discussion here is not new to this associa-

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tion. In the Proceedings of the last twenty-five years, time and again the problem of the defective delinquent has been pointed out as requiring new and more adequate facilities within the state organizations. In 1914 Dr. Emerich and Miss Storer both pleaded for separate institutions for defective delinquents. In 1920 Dr. Goddard questioned whether besides the defective delinquents, recognized psychopathic personalities should not be in a separate institution. While those investigators thought more in terms of the adult groups, Dr. Ellis, at the meeting in 1924, for the first time called attention to the specific placement problems of the juvenile group. He pointed out it had been the experience of New Jersey in transferring feeble-minded boys from the training school for juvenile delinquents to a state school for mental defectives that many of the children so transferred would show in the state school for mental defectives behavior manifestations quite different and distinctly less satisfactory than in the training school for delinquents. Dr. Ellis felt that this unfavorable reaction argued for a special institution for defective delinquents. No specific plans were proposed at this time or in the following years. On the contrary, in following meetings, as for instance in 1926, by Dr. Branham, and in 1928 by Mr. Bates, it was felt that the juvenile delinquents of defective mentality definitely should not be considered for a special institution for mentally defective delinquents, apparently because this would tend to stigmatize them. However, the road toward more constructive treatment of this group was further prepared by discussions in following years which stressed the emotional factors manifested in the cases of high-grade defectives, especially in the delinquent groups. In 1930 Dr. Montague of the New York City Children's Court Clinic emphasized the accessibility to psychotherapeutic treatment of the mentally defective group which had come to the attention of the court. However, specific recommendations as to new institutional facilities for the juvenile group were not brought before the association until last year's meeting in a paper presented by Dr. Humphreys and Miss McBee which recommended establishment of a special

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unit or institution for borderline defective delinquents under 16 years of age. Besides the question of the defective delinquent proper, the problem of psychosis and psychopathic personality in relation to mental deficiency has been a point of much discussion at these meetings during recent years, and at times has been directly linked to the problem of the defective delinquent. In 1933 Dr. Murdoch stated that there seemed to be an undesirable tendency to look at abnormal mental status in children generally as feeble-mindedness. He seemed to feel that this had developed more or less from the practical problem of lack of facilities for such children outside of institutions for the feeble-minded. Others pointed out that often the diagnosis was used "as a wastebasket to put cases known to have been in a school for the feeble-minded." No attempt has been made to widen the present study to include this problem. However, it may be mentioned that several of the cases considered for transfer to institutions for defectives were at some time diagnosed as psychotic, pre-psychotic, or psychopathic personalities, and some eventually were committed to mental hospitals. Turning from the Proceedings of the American Association on Mental Deficiency to reports from the two institutions which provided the bulk of the case material for the present study, we find similarly that recognition of the need for a new type of institution developed only slowly. It would seem advisable first to give a brief sketch of these two institutions. T h e one is Letchworth Village, an institution for mental defectives of both sexes: a large institution with a population of about 4,000, housed mainly in cottage units of about 100 and providing for all defectives from idiots to morons. T h e institution is of the open type, and for the juvenile age group provides both academic and vocational instruction as well as simple, manual labor. The number of boys under supervision of an individual attendant is very large, as is the number of patients assigned to the group physicians. T h e New York State Training School at Warwick, on the other

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hand, is a comparatively new institution which from its beginning in 1931 was designed to provide a high degree of individual care for the boys committed there. Like Letchworth an open institution without wall or fence, it houses the boys in cottages with a capacity of 32 each. There is provision for both academic and vocational training, and stress is laid on the work of a comparatively large staff of professional personnel in the medical, psychiatric, psychological, and clinic casework fields. In earlier years Letchworth Village seems to have been little troubled by the problem of defective delinquents. In the 10th annual report (1919) of Letchworth Village, it is stated: "The few delinquents in the population are gradually being absorbed into the colony life and routine." T h e 14th annual report in an analysis of the purpose of the institution shows a changing viewpoint. "It is not equipped to deal with the defective delinquent. It does, however, receive the harmless delinquent, the backward child of every age, to the limit of its capacity." And in 1928 Dr. Little stated that "children who are so delinquent as not to fit into an atmosphere provided for the simple-minded should be transferred to a custodial institution." While up to that point Letchworth Village maintained that children with delinquent tendencies should either be kept at Letchworth or be committed to an institution of the correctional type, in the annual report of 1938, for the first time, the Board of Managers asked that the state provide new facilities elsewhere for aggressive or delinquent boys, especially those of the higher mental grades. In Warwick the problem was much more urgent than at Letchworth. In the early years of the training school about 25 percent of all boys admitted had a Binet I.Q. of 70 or below. The rapid accumulation of these boys who obviously were in need of different and more prolonged training than normal delinquents resulted in a plea to the Children's Court that mentally defective boys not only were unable to profit from the program at Warwick, but also were a severe obstacle and should be committed to such institutions as Wassaic or Letchworth Village. In 1936 a new superintendent, Dr. Williams, reiterated this point, stressing that

Institutional

Placement

many of the defective boys committed were more neglected than vicious and were entirely unsuited for Warwick. Finally, in 1936, a decisive step was taken which went far in clarifying the problem. A so-called Court Committee was set up with representatives from Letchworth Village, Warwick, and the psychiatric clinic of the court. T h e meetings of this Court Committee resulted in two significant developments. First, it was agreed that a more careful procedure should be followed in the commitment of doubtful cases, and the I.Q. of 70 was agreed on as a demarcation line, with the provision that further consideration should be given to such factors as school achievement, past attendance in ungraded classes, and other, social, factors. T h e second and perhaps more important development was an increasing insight into the facilities and needs of the two types of institutions on the one hand, and of the court on the other. In a letter to the New York City Committee on the Needs of Mental Defectives, Dr. Williams pointed out that the defective juvenile delinquent frequently would become aggressive and create difficulties when placed in a group of nondelinquent feeble-minded. Dr. Williams stated that Warwick would maintain that the boy was Letchworth's problem, and Letchworth would consider the boy as Warwick's problem, because neither institution was readily equipped to handle this kind of case. Thus, there has developed an increasing awareness of the need for a new type of intermediate institution. Both Warwick and Letchworth Village are now participating in efforts toward establishing such an institution. What then is the make-up of this group of juvenile delinquents for whom we are in search of new institutional facilities? Between 1933 and 1940, 237 boys with an I.Q. of 70 or below were committed to Warwick. (As mentioned above, this number also includes a few cases with ratings above 70, but nevertheless transferred to an institution for mental defectives.) Of this group, 1 1 3 or 48 percent were white and 124 or 52 percent were Negro. More than 50 percent of the total group was over 15 years of age on admission to Warwick, the rest between 12 and 15. (Commitment age to Warwick ranges from 12 to 16 years.) By far the majority of this

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group, as is true also of the total Warwick population, had had several court appearances. It does not seem warranted to include lengthy compilations of the many factors which were tabulated for all these cases. Much of the material assembled did not bring out significant variation from the average Warwick commitment. Stealing, home difficulties (desertion, etc.), and school problems had of course played the major roles. Sex offenses were very insignificant in the total number and only 13 percent of the boys had ever at any time during their court history been involved in any sort of sexual misconduct. Incidentally, a large majority of these minor sex offenders were white, rather than Negro, boys. The Negro group was slightly younger than the white group, a fact which would seem related to the finding that the white boys have had far more previous institutional experience. This is probably explained by the fact that there are very few placement facilities for Negro boys in New York State other than the state training schools for delinquents. Out of the total group of 237 boys, 93 boys were returned to court according to a provision in the State Charities Law which states that the superintendent of an institution shall return a child who "is mentally or physically incapable of being materially benefited by the discipline of such institution." Of the 144 boys who remained in Warwick, 60 eventually were committed to correctional institutions, either while on parole, on runaway, or after discharge. Of the other 84, 27 are still on parole, 25 have been discharged for good adjustment, 7 at 21 years of age and one as out of the state. These boys are not known to have been involved in any offense which resulted in commitment to a correctional institution. Ten were transferred to the supervision of another training school due to change in the allocation of commitment districts. Four have been committed to an institution for mental defectives, and two to state hospitals. Four were discharged on probation to court. Four died. In comparing the boys discharged for good adjustment and boys discharged to correctional institutions, the following points stand out:

Institutional

Placement

!33

ι. Boys discharged for good adjustment have histories of fewer court appearances, less previous institutional experience, and better adjustment at Warwick than those committed to correctional institutions. 2. T h e Binet I.Q. bears no relation to the eventual discharge for good adjustment as contrasted with eventual commitment to a correctional institution. With reference to the entire group of 237 boys, the following facts stand out as related to race: T h e Negro boys committed to Warwick tend to be younger than the white boys, have fewer previous court appearances and considerably less previous institutional experience. Despite these facts they tend to adjust less well at Warwick, are less likely to adjust in the community on parole, and are more frequently committed to an institution for the feeble-minded or to a correctional institution after a briefer period on parole. These last findings may well be related to the social and economic handicaps the Negro boys must face. It is worthy of note that of this group of 237 boys, although 69, or 29 percent, were ultimately committed to correctional institutions, only 11, or 5 percent, were ever committed or transferred to institutions for defective delinquents. Considering now those boys returned to court, we find that the court, in almost 20 percent of the cases, decided against transfer to an institution for mental defectives and placed the boys on probation. Characteristically, far more of these were white than Negro. Those actually transferred to an institution for mental defectives are decidedly younger than any of the other groups, and this is especially so with the Negro boys. This group also tends to have a larger number with ungraded class experience. We may now consider a brief summary of the rest of the findings in regard to the group committed from Warwick to institutions for mental defectives. These findings are based largely on an intensive study of the cases which were committed to Letchworth Village. A number of those boys were interviewed at various times at Letchworth Village in order to arrive at a better compari-

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son between the two institutional programs and to utilize the boy's own reaction to such program. T h e general statement can be made that in Warwick these boys tend to be lost in the general population because of their inability to make adequate social contacts and to compete with their more alert and more aggressive associates. Furthermore, the average training period at Warwick (about 14 months) is entirely too short for these cases, and difficulties necessarily arise from keeping defective boys much longer in the same institution than the normal delinquent group. A large number of these boys come from both inadequate and undesirable home situations, and are in their personality make-up insecure and unstable. At Warwick, these boys were anxious for help from caseworkers and seem to be capable of responding to psychotherapeutic contacts. In regard to the adjustment of these boys in Letchworth the same sudden change to less desirable behavior which was described by Dr. Ellis for the New Jersey group was also noted in our study. This, it is felt, is due to the sudden and radical change in the boy's status, for in the institution for the mental defectives he now can bully whereas before he was the one in need of protection. T h e fact that the institution for defectives necessarily will segregate this group of boys transferred from delinquency institutions only tends to strengthen their aggressive drive and selfassertion. An additional factor which might explain why boys transferred from the training school as nonaggressive eventually become distinct conduct problems in the institution for the feeble-minded seems to lie in the fact that a large group of the boys transferred were rather young at that time and went through a period of adolescent conflicts and difficulties in the second institution. As can be expected, a rather large percentage of these boys transferred from the relatively close supervision of the school for delinquents became fairly serious runaway problems in the institution for defectives, which proportionally has far fewer attendants. This tendency towards persistent runaways is one of the chief reasons for marking these boys as serious conduct prob-

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lems in the institution for defectives. However, it is most significant that few of the boys who after repeated runaways finally do not return and subsequently are discharged, get into further difficulties with the law. This has been ascertained by a careful search of the files of the Bureau of Criminal Identification in the Department of Correction, which extended its full cooperation. Several of the boys at the time of the check had been discharged for three years and more, which would give a fair assurance that they have not engaged in criminal activities. In fact, of 24 boys transferred to either Letchworth Village or Wassaic and subsequently discharged while on runaway only 5 have been committed to other correctional institutions. This evidence tends to show that this so-called group of high-grade mentally defective delinquents are not necessarily a "menace" to the community by their antisocial behavior, but are largely a group of boys who are capable of a community adjustment on a simple level. As Dr. Montague pointed out in her paper of 1930, "Due to their limited intelligence these boys had feelings of insecurity and inadequacy, and these feelings usually produce exaggerated emotional response under stress. Therefore, they committed delinquent acts in a spirit of bravado in order to compete with their delinquent friends in an effort to compensate for their feelings of insecurity." However, freed from the school situation in which they are perennially marked as failures, and able to derive satisfactions from increased independence, they are much better able to make a satisfactory adjustment. T h e following case may serve as an illustration: Michael was admitted to Warwick in 1935 when 14 years old. He was first in court in 1934, when his father petitioned that he was ungovernable and addicted to petty thievery, was a truant, and stayed away from home. The boy was placed on probation and in 1935 committed to Warwick after he and several other boys burglarized a store. T h e father, born in Czechoslovakia, never was an adequate provider for his family and drank to excess. In 1935 he was committed to the penitentiary for petty larceny. The mother, who was

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also born in Czechoslovakia, was illiterate and worked as a domestic and factory worker. She was considered "obviously a mental defective." T h e r e were seven children, of whom Michael was the third. Michael's birth and early development were normal but for a retardation in talking. It is noteworthy that the mother during all this time suffered abuse from the intoxicated father. In school, the boy made slow progress and was deficient in every subject. He was found to have an I.Q. of 64, and training along simple manual lines was recommended. On admission to Warwick, Michael was seen as a rather nicelooking, immature little boy who wept freely and seemed frightened. He was able to give a good account of himself and his activities. He showed little evidence of aim, ambition, or incentive and seemed to be just drifting along in his own inadequate way. T h e psychiatrist stated, " H e is immature in his reactions and very unsophisticated. T h e r e is no evidence of an aggressive or vicious nature. His difficulties seem to have arisen more through neglect than through delinquent traits. He needs guidance and protection but will probably offer no problems of management." He was considered a conscientious worker who made an effort to get along. In manual skills, he displayed considerable facility. After initial difficulties, the boy's adjustment in the cottage was quite good. Because of the boy's low test rating at Warwick (Binet I.Q. 62), he was considered by the institution's subcommittee on mental defectives, which described him as "a pathetic-looking boy who was not aggressive, but rather bewildered and who had not been in trouble." For the "boy's own good," the subcommittee recommended transfer to an institution for mental defectives. Michael was admitted to Letchworth Village in June, 1936, after ten months at Warwick. In Letchworth, he at first made a rather good adjustment, after one runaway. He was well liked by the boys, was clean, neat, alert, and active. He worked as a houseboy and in the carpenter shop, running the lathe, and was good in various types of carpentry work. In August, 1937, another physi-

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cian described him as sometimes moody with suicidal wishes and as always having girls on his mind, but he still was considered neat and fairly well-behaved. In April, 1938, he lost his job, owing to misbehavior. In July, another note describes him as "a difficult boy to understand, inclined to be sneaky, and to bully small boys. He feels very important and is very moody. High-grade boy, who could do well if he tried. Psychopathic personality." One month later the boy ran away from Letchworth, was returned a month later, and, after a few days, escaped again. He was never heard from and eventually was discharged. Michael definitely is the borderline type, with enough intellectual equipment to profit from academic and especially vocational training. He did well enough in Warwick, and showed improvement both in conduct and in work. He was, however, a weak, inoffensive boy who was overwhelmed in the more aggressive delinquent group and doubtless was under unfavorable influence there. At Letchworth, his vocational adjustment seems noteworthy. It would appear, however, that this boy's difficulties were closely related to the insecurity and instability of his home, and that he needed and was able to respond to casework treatment. In this respect Letchworth was not equipped to fulfill the boy's needs and an increasing maladjustment was the consequence. The institution which would have offered proper treatment for this boy would have been one with reasonable custody and provision for long-term care, combining casework under psychiatric guidance and a stimulating program in the academic, vocational, and recreational fields. Such an institution does not exist at present. Summary and Conclusions The results of the adjustment of these groups in Warwick, Letchworth Village, Wassaic, and in the community definitely confirm the need for special institutional facilities for borderline defective delinquents under sixteen years of age, as at present suggested by the New York City Committee on the Needs of Mental Defectives. From our case material, we arrive at the following suggestions for such a new institution:

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I. It should be a separate institution and not a unit of another institution. T h e major objection to the plan of providing for the high-grade mental defective a special unit within an institution now in existence lies in the practical difficulty of having one institution serve two different purposes. T h i n k i n g , for instance, in terms of vocational opportunities, it can easily be foreseen that the delinquent group would be the less favored group and consequently would be deprived of many valuable vocational placements within the institution. A similar situation can be found by comparing juvenile training schools for different age groups. In a training school for the ages of 12 to 16, the 12- to 13-year-old boys will be considered the "babies" and the vocational shops usually are closed to them. However, in a similar training school which accepts 9-year-olds, the 12- and 13-year-old boys will be permitted to work in the shops. Another argument in favor of having a separate institution rather than a special unit is based on the observation that segregation of a group within an institution will invariably tend to accentuate undesirably the very symptoms because of which segregation was felt necessary, and will band together the segregated group against the rest of the institution. II. It should provide much more psychotherapeutic facilities than are at present available in institutions for mental defectives. T h e material on which this study is based has shown conclusively that the mentally defective juvenile delinquents not only are accessible to casework contacts but often will present an unfavorable if not hopeless diagnosis unless competent psychotherapeutic treatment can be given at an early stage. M o s t of these b o y s have suffered distinct deprivations and have an intense feeling of insecurity which very frequently can be successfully alleviated through direct treatment contacts as well as through constructive and stimulating personal relationships with competent and understanding employees. III. It should provide for definite vocational training of which this group seems entirely capable. A l l too often and especially in institutions where they are in a minority, it is taken for granted

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from the beginning that the mental defective is incapable of any sort of mechanical work. Experience has shown, however, that high-grade mentally defective boys can profit slowly but definitely from a trade training program, adjusted to their limited capacity. IV. It should provide a stimulating recreational program. Contrary to common belief, defective boys often are able and eager to participate in recreational group activities. Their major reason for nonparticipation usually is fear of and inability to compete with more talented mates. However, there is definite proof that mental defectives are able to participate in a modest scheme of self-administration, in clubs such as current events, stamp collecting, etc., that they can play in bands and organize their own sports teams. V. It should provide for a more extensive aftercare set-up, because these boys seem to be capable of profiting from more than mere supervision, and because there is little stability to be found in the home situations and in many cases no adequate home at all is available. It is obvious that the cost of casework facilities within and aftercare without the institution will be decidedly less expensive than many years of mere custodial care which institutions for mental defectives at this time admittedly have to assume because of lack of community placements. VI. T h e study has shown that some of the juvenile delinquents transferred as defective to an institution for the feeble-minded have been able to adjust well there. On the other hand, some of the boys who remained at the training school for delinquents in spite of their low test ratings profited from that program. This stresses the fact that a careful analysis of every case is essential for institutional placement of this group. How important every detail of such a case study is was emphasized in a number of the cases included in the study in which a wrong birth date resulted in the lowering of the boy's intelligence quotient and in the consideration for transfer to an institution for mental defectives. This in turn is a further warning against the indiscriminate use of psychometric test ratings without regard to the psychologist's interpretation.

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T h e need for more careful procedure 011 the part of the court was brought out emphatically in the study in cases which showed a strangely illogical shifting in commitment from one type of institution to another. T h i s applies to the juvenile as well as the adult court. Cases were found which had been committed to Warwick without regard to earlier commitment to an institution for defectives. T h e r e were a few other cases of boys who were first committed to an institution for delinquents, then transferred to an institution for defectives, later committed to a reformatory for normal young adults, from there transferred to an institution for male defective delinquents, only to be committed later to a penal institution for "normal" criminals. While the number of such cases is small, the total expense to the state is considerable. V I I . T h e question should be carefully considered as to which state department should assume responsibility for this new type of institution. It is obvious that the institution will have to be administered in a different way from that of the traditional schools for mental defectives or juvenile delinquents. Mental hygiene institutions just as much as training schools for delinquents tend to become sterile in their pattern and find it difficult to have the type of all-embracing program which has here been suggested. Beyond these immediate suggestions, the following findings may indicate need for readjustment of treatment facilities in various areas: 1. There is indication that indiscriminate placement in a special class may tend to increase a defective child's feeling of inferiority and decrease his ability to make a good social adjustment, if such a class is merely used as a "catchall" for undesirable pupils, without providing a program geared to emotional as well as academic needs. Dr. Montague, in her above-mentioned paper on the "Causes of Delinquency in Mentally Defective Boys," stresses the fact that out of 227 defective boys in ungraded classes only 12 percent were satisfied and happy in their school life, and these were, for the most part, the lower grade of the feeble-minded with no special abilities. 2. A study of the Negro cases seems to indicate that the lack of

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adequate welfare facilities, both institutional and community agencies, results in an overtaxing of available facilities and, specifically, in the commitment to institutions for mental defectives of Negro children who would be able to make a satisfactory adjustment in a more normal environment. 3. A greater utilization of institutional facilities by specializing their function seems to be as promising for institutions for mental defectives as for training schools for juvenile delinquents. T h e institutional field has failed to provide for careful classification of inmates in terms of their particular needs. Most institutions in the Department of Mental Hygiene are established, not on the basis of classification of inmates, but upon the basis of geographical distribution of inmates. All of them attempt so wide a range of treatment as to be less effective than would be the case if proper classification existed. T h e same charge could be made against the training schools.

I wish to express my appreciation to the Superintendents of Letchworth Village and Wassaic, who very kindly gave me free access to their files and enabled me to interview patients, and to Schachne Isaacs, Psychologist at the New York Training School for Boys. Reprinted by permission of the American Association on Mental Deficiency from the American Journal of Mental Deficiency, January, 1941.

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Planning for the Retarded Delinquent Testimony given before the New Jersey Youth Study Commission, Trenton, New Jersey, February 13, 1958 T h e subject of mental retardation and delinquency has been ignored too long. During the past ten years when mental retardation has been studied by many disciplines, its relationship to delinquency received but little attention. Because I feel that this observation is of significance to your work and might influence the course of your investigation, let me document it briefly. In 1930 Dr. Stanley Powell Davies wrote one of the standard texts in the field of mental retardation entitled Social Control of the Mentally Deficient. T h i s month, Dr. Davies, now General Secretary of the Community Service Society of New York City, completed a revision of this original text, written in collaboration with Miss Katherine Ecob, a well-known expert in the field of mental retardation. When I asked Dr. Davies if he had been able to record considerable progress pertaining to the defective delinquent he said that it had been most astonishing to him how little had transpired during the intervening twenty-eight years in this special area of mental deficiency. He added: " I described the Napanoch (New York) institution and its training plan in the first edition of my book and this still seems to be in the forefront." Equally as striking as Dr. Davies's comment is the fact that the librarian of the National Probation and Parole Association, the most distinguished national organization in the field of crime and delinquency, could not direct me to a single article in either their journal or any of their yearbooks that dealt with the subject of the defective or mentally retarded delinquent.

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I have dwelt on this lack of activity at length because it is well to remember that much of the testimony you will hear on this subject, including my own, is based on observations and impressions rather than on rigorous, exacting research and comprehensive statistical study. It is my sincere hope that out of the hearings you are now holding and out of your subsequent explorations and deliberations, there will come an emphatic demand for needed research efforts and demonstration projects in addition to the ameliorating administrative and legislative measures that will be urged upon you. Your Commission asks, "What is the relationship between mental retardation and delinquent behavior in children and youth?" A good deal of misinformation is bandied about by the general public as well as by seemingly well-informed writers and lecturers to the effect that mental deficiency or mental retardation (and I shall use these words interchangeably here) is a major cause of criminality and delinquency. It is further implied that this refers to major criminality and delinquency. This subject is entangled in confusion. Much time has been wasted in the past in differentiating between defective delinquents and delinquent defectives, in an attempt to allocate administrative responsibility. I shall proceed on the assumption that we are concerned with individuals whose basic impairment is mental deficiency and whose degree of retardation precludes complete independence and self-management in society in spite of special education and training. T o o often individuals have been classed as defective delinquents merely on the basis of poor academic performance and often even, as one recent author 1 has pointed out, on the basis of faulty, hurried testing. Confusion is engendered by a misconception which holds that the more severely retarded individual has a greater susceptibility to delinquency. In considering the relationship of drug addiction to crime, it is readily assumed that the more serious the drug addiction the more serious is the criminal potential. This analogy is 'David Abrahamjen, Who Are the 195*), p. 124.

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definitely not the case in mental retardation. The severity of the handicap, to the contrary, acts as a roadblock to delinquent activity. It is in the upper ranges of mental retardation that we find delinquent activities. Next, efforts to establish an easily recognized "type" of defective delinquent have not been successful.2 This does not imply that defective delinquents do not pose a considerable problem. Even if not as large in numbers as once had been believed, they still pose very vexing problems in both prevention and treatment. In terms of specific causation of delinquent activity, prevailing studies seem to show that we have as wide a gamut of motivation in the defective or retarded delinquent as in the intellectually average delinquent. In the case of the retarded, the painfully obvious lack or inadequacy of facilities in school, home, and community often points up sharply the circumstances leading to delinquent activity. So far, my comments have followed the usual pattern of thinking on the relationship between mental retardation and delinquent behavior in terms of aggressive behavior, of antisocial activity, if you please. However, I hope your Commission will highlight the reverse side of this picture as well. The presence of inadequately provided for, poorly trained and supervised retardates in the community is a distinct social liability, and a very specific factor in delinquent activity of nonretarded children and adults. I would summarize my comments as follows: While there is no evidence that the incidence of delinquency is higher among the total group of retardates as compared to the general population, the handicap of inferior intellectual endowment does constitute a specific causative factor in delinquent behavior, particularly in the upper ranges of mental defect. Since mental defect is the lasting condition and delinquency merely a behaviorial episode, no matter how often repeated, the primary guiding principle in dealing with these individuals should be the mental defect. ' S o l Levy, " T h e Role of Mental Deficiency in the Causation of Criminal Behavior," American Journal of Mental Deficiency, January, 1954, pp. 462-63.

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T h e unsupervised presence of retardates in the community easily makes such individuals the victims of delinquent conduct on the part of a nonretarded child or adult. T h e retardate is no less a victim when, through lack of judgment, he is made a dupe or pawn by the nonretarded criminal or delinquent. Your second question asks: "What are the strengths and weaknesses of educational, vocational, and treatment programs for helping mentally retarded children adjust in school and in the community?" May I start out by quoting an English writer. In the American Journal of Mental Deficiency, Dr. Martha Foale states: " T h e surest road to the patient does not lead through the broad highway of diagnostic classification but through the narrow trail of individual personality study." 3 In mental retardation perhaps more than in any other field, we need to make this simple, almost naive statement our daily motto, our constant admonishment. I say so because I know of no other field where individuals have been judged and so frequently victimized by broad pronouncements and generalizations. W e have been all too ready to hang on our retarded children and youth ready-made classification labels. W e have prejudged what such an individual could or could not do and then "processed" him accordingly. If we have to venture into broad generalization, let it be this— that the strengths and weaknesses of educational, vocational, and treatment programs for helping mentally retarded children are first and foremost dependent on the quality (and that, of necessity, includes the factor of quantity) of available, individualized diagnostic facilities. Others are far better equipped than I am to detail the specific requirements in setting up these diagnostic facilities. Let me limit myself to this emphatic stress on the need for a vast increase in diagnostic facilities, not just a few hours of additional psychological and medical consultation here and there. Our usual starting point of concern for the mentally retarded child—and I mean here "official" concern—which comes during the early school years, is much too late. There is little logic in * Martha Foale, "An Approach to Stabilization of Male Juvenile Mental Defectives," American Journal of Mental Deficiency, July, 195», p. 118.

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spending money liberally for the best possible special education and training programs in school (and we surely are far, far away from that millennium) if we allow the child's condition unnecessarily to deteriorate beyond his original handicap, simply because we neglect to aid him and his parents during his early preschool years. Parent guidance and counseling, aid in home care, nurseries for part-time day care under proper educational guidance even for the youngest, and of course diagnostic clinics equipped to give continuing guidance where indicated—these are the obvious priorities in any well-developed, long-range plan for community services, backed by the availability of residential care of whatever type and duration is needed. T o a very considerable extent, the strengths and weaknesses of educational, vocational, and treatment programs for retarded children will rest on prevailing community attitudes. There is little use in training a retarded child with painstaking effort to become socially adept and responsive, if misinformed, fearful neighbors will have their children shun him and make him the outcast of the neighborhood. There is little use in teaching a retarded youth work habits, independence in getting about, and occupational skills, if misguided townspeople, haunted by old wives' tales and superstitions, refuse even to consider that a mental handicap, too, can be partially overcome. I hope your Commission will give close study to the need for educating the public regarding mental retardation and that you will see fit to come forth with specific recommendations in that area. Another point that will warrant your attention is the question of coordination of services, including provision for sound longrange planning. Here we meet with historical obstacles. In the days when there was but one sure plan for the retarded—excepting school attendance—namely the state institution, governmental responsibility rested on the state level and private, voluntary effort was all but nonexistent. Today we face a different picture, a picture that has changed so rapidly that it had to grow without benefit of blueprints and master plans. Therefore, your Commission will need to direct its attention to the question of appro-

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priate division of labor and of responsibility as between the state, the county, and the municipality, including the school boards, on the one hand, and on the other hand the allocation of responsibility as between public and private, voluntary effort. W e hardly can expect to make up in short time for the thoroughgoing neglect of past decades if we leave merely to chance or to the initiative of individual administrators or to the interest of an individual legislator the decision as to who should perform what services. Certainly we must avoid duplication—but that surely is far too negative a caution. W e must see to it that services supplement and complement each other and that on each level we perform those services which best fit there. New Jersey is further ahead than many other states by having initiated the Bureau of Mental Deficiency in the State Department of Institutions and Agencies, but I am sure Mr. Tramburg and Dr. Kott would agree that we are still in the beginning stages of this development on the governmental level. Since my remarks have been so largely concerned with the future, let me make one additional general observation: As I indicated earlier, much of what we say today about strengths and weaknesses of existing services is based on impressions and informal observations. It is all too evident, then, that we are in urgent need of systematic research efforts in the field of practice. It would appear fair to say that in some measure and regard, these strengths and weaknesses of our programs reflect a lack of knowledge of what are reasonable expectations as we try to plan for retarded children and youth. T h e spectacular progress we have made in the past decade may lead us to swing the pendulum too far and to expect too much of vocational training or school programs, thus creating a sense of failure and frustration in our children. Hence the importance of having a systematic evaluation as a built-in part in all programs which will be developed. I turn now to your third question: "How can mentally retarded juveniles, delinquent and nondelinquent, be most effectively treated within institutional settings?" In answering this question I shall lean on a study I made nineteen years ago and

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subsequently published under the title " T h e Problem of Institutional Placement for High-Grade Mentally Defective Delinquents." 4 It was based on a study of both a state institution for delinquents and one for the mentally deficient. However, while my conclusions then were rather indefinite, at this time I would want to state as my first premise that children and youth who are mentally retarded should be cared for in an institution for the mentally retarded regardless of the nature and extent of any delinquency they may have committed. Obviously this will call for specialized facilities within such state schools, homes, or hospitals, but experience would seem to bear out that this cannot reasonably be accomplished by simply drawing a dividing line between delinquent and nondelinquent residents. Rather, our point of departure must be the recognition that any residential facility for the retarded will have to develop a plan providing for different degrees of supervision and custody. Even if an institution for the retarded does not have in its care individuals who have been adjudged delinquent, there will be unruly, disturbing, aggressive individuals who require a restraining, disciplinary regime for their own protection and that of the other residents. Conversely, children and youth may be committed to such a facility on the basis of formal adjudication as delinquents, yet may be in need of protection rather than restraint. In short, it would be my recommendation to have within the residential facility for the retarded, a building plan providing for a variety of structures specifically adapted to disciplinary needs along with other program needs and so distributed on the grounds as to facilitate a fair degree of separation of certain groups from each other. I would submit, however, that few are the states in this nation where such an obviously asymmetrical residentcentered plan would get by the State Architectl Naturally, a question arises as to how large a disciplinary or restraint facility is needed. In inquiring about this from various superintendents I get such widely differing answers that one 4 Gunnar Dybwad, " T h e Problem of Institutional Placement for High-Grade Mentally Defective Delinquents," American Journal of Mental Deficiency, January, 1941, pp. 391-400.

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could only surmise that conditions pertaining to the plant and the management of each particular institution were the key factors rather than the actual extent of delinquent behavior. It would seem necessary, therefore, to take a careful look at the type of problem the administration considers as basic to institutional segregation. Rather than to think of just one special disciplinary or restraint unit for each institution, it would be far more effective and also more economical from a management point of view to have at least two such units. This would not only facilitate a greater differential in treatment but also anticipate a possible decreasing need for such special treatment as better staff ratios and better auxiliary services produce a more favorable institutional climate. I would rather make this kind of general statement than to comment on any one specific percentage of the institutional population which might require restraint. There are, as you may know, various superintendents who recommend that rather than building a separate unit on the same grounds, a separate institution altogether be established in their state for these troublesome "delinquent" retardates. Again limiting myself to children and youth, I feel quite strongly that such a move would be undesirable since it would undoubtedly involve unreasonably high costs. Small residential units on a separate basis are feasible when they have a flexible informal program, but not when custody assumes a major proportion.

V. The Retarded Adult

13

Rehabilitation for the Adult Retardate Presented before a Joint Session of the National Association for Retarded Children, the National Rehabilitation Association, and the Medical Care, Mental Health, and Occupational Health Sections of the American Public Health Association at the Eighty-eighth Annual Meeting in San Francisco, Calif., November 3, i960 Two years ago I was privileged to include in a European trip an all too brief visit to mental retardation facilities in Holland. I can think of no better way to come quickly to the core of the subject with which I am concerned than to relate some of my observations during visits to the facilities for the retarded. The first was a sheltered workshop in The Hague, giving daily full-time employment to some 300 mentally and physically handicapped persons. In this workshop I saw severely retarded adults, men and women, working on assembly lines for the complete manufacture (including packing) of a gym shoe, on the manufacture and the assembling of various parts for a T V set and an electrical transformer, and performing other jobs of similar nature. Not all sections of this workshop dealt with this type of manufacture—there were others where quite simple jobs were undertaken, such as stuffing materials in envelopes—but the point to be stressed is that not just mildly retarded persons, but also the severely retarded worked on apparently more complicated jobs. I shall speak specifically of a young woman in her twenties with a pronounced case of Mongolism. She had been given a Binet test by a competent psychologist and scored an I.Q. of 35. When I saw her she was sitting behind an electric sewing machine manufacturing a very pretty child's dress. At the end of the day she would walk to her

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locker, put on her hat and coat, walk downstairs to the street, and wait for a streetcar that would bring her home. She had been in the workshop for four years of training on a variety of general, more simple tasks, and had then served a six months' apprenticeship in the dress manufacturing section before being assigned to her present job. Her work output was substandard and her wage below the " m i n i m u m " wage in Holland, but she certainly was effectively engaged in commercial production in spite of her serious mental and physical handicaps. She worked in the shop on a 44-hour week, including Saturday morning, and also participated in some special evening recreation activities for the mentally retarded, arranged for by another community agency. T h e other facility I visited was a large institution for the retarded. I saw many fascinating programs there; however, I will cite one that seems particularly appropriate considering our topic: On the institution grounds were several smaller houses, distinctly along the lines of a family home. I visited one of them and found it was occupied by from six to eight men who lived there by themselves, without having an attendant assigned to them. T h e y took care of all their own household chores, and each man besides had a full-time job either in the nearby community or in the institution. Some of these men were slated to return to the community, others seemed to require indefinite institutionalization. But whatever the circumstances for their having to remain in the institution, it was obvious that the management looked upon them as moving toward the final stages of a rehabilitation process. I hope I have pointed up that when we talk about rehabilitation for the adult retardate, we are not speaking merely about the so-called high-grade retarded. Furthermore, mentally retarded adults are capable of a much higher grade of production than we have previously presumed feasible, and those in institutions also furnish good subjects for rehabilitation efforts, leading to an eventual return to the community for some of them, and to a more productive and satisfying life in the institution for others. Finally, I hope I have conveyed my feeling that much significant work in the area of mental retardation is being carried on in

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other countries whose methods and achievements we should study carefully. In general the observation can be made that in the past we concentrated too much on developing classifications which denoted our preconceived notions of the retardate's limitations and then proceeded to restrict his program and his opportunity to grow in accordance with our notions! Clinical evidence clearly demonstrates two factors: A n intelligence test, such as the Stanford-Binet, is not by itself an adequate measuring device of a retarded individual's potentiality. Furthermore, research in Europe and this country shows that severely as well as mildly retarded children have a distinct growth potential and may so improve in their general functioning under a favorable set of circumstances as to move from one of the traditional classifications to the other. In other words what we see emerging in the field of mental retardation is an infinitely more dynamic concept and a more forward-looking optimistic approach. For many of the retardates the progress will be both slow and limited and still keep them largely dependent on the help of others, but that there is movement at all is significant. For appraisal of a retarded individual's potential, we need full clinical evaluation and periodic reevaluation, relying to a considerable extent on observation of functional performance rather than abstract testing. Many of the more severely retarded individuals have concomitant physical disabilities. That these physical disabilities often severely interfere with performance is beyond any doubt, as is also the fact that the medical care of the mentally retarded has been grossly neglected both in the community and in the institutions, if one looks to physical restoration as an important part of medical care. T o o long, for instance, has the child with Mongolism been deprived of the attention of the physiotherapist to help correct some of his deficiencies. In turn this undoubtedly relates to the fact that mental retardation has too long been regarded as just a mental health problem which could safely and comfortably be left to the psychiatrist. It is therefore most

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encouraging to find in the field of public health in general and in the program of the American Public Health Association specifically an increasing interest in the mental retardate. When Vocational Rehabilitation was first firmly established in this country with the passage in 1920 of the National Civilian Vocational Rehabilitation Act, the mentally retarded were not included among those with disabilities that could be served. At that time the "Colony" idea, as developed by Rome State School in New York, was by and large the only program pinpointed at rehabilitation. In 1943, Public Law 1 1 3 , known as the BardenLaFollette Amendments, for the first time specifically included mental retardation, and also widened the concept of rehabilitation. Finally in 1954 Congress passed Public Law 565 which greatly increased not only the available funds but also the uses to which this money could be placed, and from that year date the numerous special rehabilitation projects for the mentally retarded that are now in existence. (A Sheltered Workshop Directory issued recently by the National Association for Retarded Children lists 100 such establishments throughout the country.) T h e National Institute on Workshop Standards describes sheltered workshops as work-oriented rehabilitation facilities "with controlled working environment and individualized vocational goals, which utilized work experience and related services for assisting the handicapped person to progress toward normal living and a productive vocational status." Programing in sheltered workshops for the retarded includes: screening and evaluation of trainees, developing work habits, developing work attitudes, job tryouts, and job training. T h e objective of "progress toward nor mal living" implies of course that the workshop is of transitional nature, leading to job placements in the community. However, there are a considerable number of the mentally retarded of varying levels of mentality who, while capable of continuing productive effort on a regular basis in a sheltered and closely supervised workshop, are unable (owing to personality or physical problems) to work in the community. For them we need in increasing num-

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bers so-called terminal or nontransitional workshops, which would offer sheltered employment for an indefinite period, and should largely be self-supporting with the help of subcontracts from industry and business. In contrast the transitional workshop with its heavy emphasis on evaluation services and on the various diversified training procedures must always depend on subsidy in one form or another. It should be obvious that successful placement of a mentally retarded young man or woman will depend on the quality of counseling that individual is receiving. Some of this counseling is directly job and shop related and obviously must be taken care of by the workshop staff, which should include or have access to a trained counselor. Indeed a few workshops have done an excellent job in not just providing guidance to the individual enrollee but in stimulating and guiding group interaction. Through meetings with duly elected representatives of the trainee group, through "bull sessions" and committee action (planning of picnics, of office improvements, of their own work schedules), through frank discussion of complaints, a great deal can be accomplished. In San Francisco, the Work Training Center of the local association, "Aid Retarded Children," has successfully pioneered in using group guidance as an important part of its program. In weekly sessions of an hour's duration the group was given an opportunity to express themselves freely on any and all subjects of concern to them. A detailed account of this project was published by Myra R. Schapps, who guided it through its first year and who gives convincing evidence of how a patient approach can result in considerable and helpful verbal production on the part of a group whose language difficulty has made communication among themselves and with others a particular problem. While this program now being conducted at the San Francisco Workshop seems best characterized as group guidance, there undoubtedly will arise the need for specific psychotherapeutic work with certain of the adults or young people enrolled in sheltered workshops, either on an individual basis or as group therapy.

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Perhaps this is a good point at which to raise the question as to who should render these services and under whose auspices. This is indeed an area where there is considerable disagreement. One view holds that a sheltered workshop should provide as many of the services needed by adult retarded individuals as possible. This would include such programs as group guidance, group therapy, recreational activities, and health services. Perhaps the last item can put this question into clearer focus: How much health service should be provided? Visits by the public health nurse? Regular medical examinations? Dietary counseling? Others hold the view that if one of the aims of the sheltered workshop is to help the mentally retarded individual to take his place in the community as a productive worker—whether in open or m sheltered employment—then we should help him to use as many of the existing general community facilities as possible. Specifically: Should the adult retardate who attends a sheltered workshop and faces a personal adjustment problem in his daily living outside the shop get his counseling help from special counseling staff attached to the workshop, or should we expect a general counseling agency in the community to be ready to aid him? I am well aware that in this regard most family service agencies at the moment would declare themselves ill prepared to cope with the personal (not job-related) problems of a retarded adult, but the question here is for the future: What kind of facilities should we expect to have in 1965 and 1970? Will we, for instance, develop more comprehensive counseling centers for all handicapped people, as separate community agencies? It was my impression that Holland with its much more highly developed community programs tended to restrict the workshop to the specifics of job training, thus providing a continuing job opportunity for those unable to work in unsheltered, open employment in the community. Programs aimed at general socializing or recreational activities were provided for in the evening, and under auspices different from those of the workshop. T h e intention was obviously to make the sheltered workshop as similar to a regular place of employment as possible, leaving extraneous

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services to the appropriate community agencies working in that particular area. This whole issue, which certainly deserves our most thoughtful attention as we plan for the future, is brought perhaps into particularly clear focus when we think of residential facilities for the retarded in the community. Max Jones, age 26, attends a nontransitional (terminal) sheltered workshop. He lives with his widowed mother, helps about the house, attends community functions on his own. His mother dies—he now needs a place to live, a bed to sleep in. Which agency should provide this for him? And what if the death of the mother had occurred to John Smith, a retarded person who had moved from sheltered workshop training to a job in industry as a cleaner in a local factory? Both men have need for protective oversight—some form of legal guardianship—but obviously to a different degree. Both now need a new abode. T o which community agency should they turn? In one state, the department of public welfare has long had major responsibility in the planning for and the protection of the mentally retarded; and in another, the state department of health has recently been given broad responsibilities, as yet quite undefined in their particulars. The degree to which the Vocational Rehabilitation agencies of the various states become involved in operational services differs markedly. In other states the department of mental health is assumed to have major responsibility for the problem of mental retardation, though this is demonstrated more by claim than by performance when it comes to care for the retarded person in the community. Speaking specifically of sheltered workshops, some people have deemed it a responsibility of the public school to move from the usual informal and limited prevocational instruction into operation of sheltered workshops for the older "pupils," with some reference to the continuing role of adult education. In compiling this rough list of concerned governmental agencies I did not intend to single out any one as especially suitable. Here, as in other areas of human welfare, the specific needs and the varying traditions and present governmental structure of the 50 states

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will produce varying solutions. That all this will require imaginative social engineering, and rethinking of fiscal policies (for instance, as to cost distribution between local, county, state, and federal levels) goes without saying. While sheltered workshops for the retarded have grown considerably in numbers during the past four years and represent a wide array of types of job training and effected job placements, it is imperative to emphasize that we are very far behind even modest expectations. In 1958 only 2.1 percent of all handicapped persons rehabilitated under Office of Vocational Rehabilitation sponsored programs were mentally retarded, and this figure is expected to grow only by 10 percent for 1959 and i960. Regardless of what base figure we should use for the percentage of the mentally retarded that require vocational rehabilitation services (and this percentage is very much in dispute), it is clear that we need urgently a sharp increase in such facilities; this in turn implies a need for more specialized personnel to operate them. It is fortunate indeed that the director of our federal Office of Vocational Rehabilitation, Miss Mary Switzer, has taken a particular interest in the development of services to the retarded. But the community at large and public officials in the states have heard so much of the mentally retarded having the mentality of children—of well-meaning but so misleading designations like "Eternal Children" or "the Unfinished Child"—that there remains considerable hesitancy to recognize the retarded as adults, let alone as adults capable of sustained productive effort. T h e fact that the President's Committee on the Employment of the Physically Handicapped now has extended its work to the fields of both mental illness and mental retardation should greatly accelerate needed education of the public. So far I have largely addressed myself to vocational rehabilitation, but vocational training and placement services and sheltered employment represent only one aspect of the needs of the adult retardate. Rehabilitation has been defined as "restoration of the handicapped to the fullest physical, mental, social, vocational, and economic usefulness of which they are capable." Of course, strictly

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speaking the mentally retarded are not rehabilitated, and instead of restoring them we should say we "enable" them—but otherwise the definition applies to the retarded as much as to the physically handicapped. T h e emphasis in this definition needs to be placed on the concept that the goal varies with the capacity of the person to be rehabilitated—it may mean full employment at a semiskilled job in industry or nothing more than the ability to dress one's self and take care of one's bodily needs. T h e end result in either case represents not only a significant enrichment of the life of the handicapped person but equally a distinct contribution to the common good—if only negatively by lessened demand for personal service. This concept is imbedded in the "Independent L i v i n g " amendments to the Vocational Rehabilitation Act, which will be before Congress once again in 1961. In essence this proposed legislation incorporates in a specific forward-looking way knowledge that has only recently been developed in tangible form: T h a t even with the most severely retarded individuals (and I hasten to add the same holds true for other severely handicapped persons) we can expect definite improvement in their ability for self-care (however limited) if proper, qualified helping service can be provided. As long as the provisions of the present rehabilitation legislation are predicated on vocational goals and achievements, there is a continuing pressure to bring into existing workshops and training centers individuals who are not proper candidates but for whom no other provision exists in the community. T h e proposed Independent Living provisions would remedy this decisively in that they would permit the setting up of facilities not predicated on vocational achievement. T o save time and to bring these new services into clear focus let me quote the description of such a facility, in this case named an Occupation Day Center, developed in New York City under the guidance of Joseph T . Weingold, executive director, then of the New York City, and now of the New York State Association for the Help of Retarded Children, and one of the pioneers in rehabilitation services for the mentally retarded. He states:

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T h e Occupation Day Center's specific aims are: (a) to establish a day program for the mentally retarded adults between the ages of 17 and 25 who are too immature or functioning too low intellectually to participate meaningfully in a vocational rehabilitation workshop, (b) to provide services in this program to help the retardates develop their maximum potentials in personal adjustment, social development, and vocational competence within their homes or beyond, (c) to train the retardates in the skills of daily living, homemaking, simple industrial operations, self-care, and constructive use of leisure time, (d) through this service, to develop the abilities of the retarded to contribute to the society in which they live and to help create a climate of acceptance for these retardates in the community and in their own homes, (e) to give their parents an intensive counseling service at the same time, and (f) to prevent institutionalization by providing, not only a place to develop skills, but also a socially acceptable milieu in which they can spend their days. In it we are making comparisons between the participating and nonparticipating groups to measure changes in family acceptance of the retardates, in parental aspirations with regard to the children, in future plans for their children, and in attitudes toward institutionalization. Note carefully what is being provided here: an on-going service which is at the disposal of the retardate as long as he remains in the community, a program not only for his development, but for the development of the family relationships with regard to the retardate and the whole question of retardation, a recreational and leisure-time program which will fill in the voids left by the training center, and finally some possibility of movement toward vocational goals. T h i s quotation by Mr. Weingold must suffice as an example of the kinds of program planning that challenge us in this new field. W h i l e in general the services which could be developed under this Independent L i v i n g legislation have been related to the community, we should expect a very decisive influence also on institutional programs, particularly in so f a r as these institutions are concerned that still today relegate by plan large groups of their residents and patients to so-called custodial care. One should also point to the significance these developments have in the area of child health, where public health has recorded so many distinctive achievements. T h e r e still is an inclination on the part of some public health officials to consider mental retardation as a problem that is the psychiatrist's concern. Fortunately,

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the significant work of the more than 70 mental retardation clinics which have been established in this country—largely with supporting Maternal and Child Health grants—under pediatric guidance has highlighted to what extent mental retardation is a problem for the public health nurse, the pediatrician, the orthopedic specialist, the physiotherapist, the speech therapist, and a host of similar workers in the field of child health. While young adults afflicted with Mongolism are earning regular wages in sheltered workshops, performing messenger services, or acting as household helpers, general medical practitioners, pediatricians, and psychiatrists in many of our states still advise parents at birth to place their Mongoloid child in an institution and "forget about him" because "there is nothing anyone can do for this child." Of course, actually only a small percentage of all Mongoloid children are placed in institutions in infancy—for one thing there is no room for them—but one can safely say that only a small number of those in the community get proper pediatric attention or specific help to overcome their physical disabilities. And so, with all the emphasis I have put on the injurious effects of our prejudice against retarded adults, let me stress that as persons interested in public health, we must do much more to overcome the results of these same prejudices and prejudgment as they affect the retarded infant and young child. T o be sure, some of these individuals will progress but little, but who can dare deny them the opportunity to develop to their fullest capacity? Toward that end I hope my comments on progress achieved with retarded adults will help to stimulate interest and programs in this most challenging field.

Reprinted by permission of the American Public Health Association from the American Journal of Public Health, July, 1961. Copyright 1961 by the American Public Health Association, Inc.

14

Administrative and Legislative Problems in the Care of the Adult and Aged Mental Retardate Presented at the Annual Meeting of the American Association on Mental Deficiency, Cincinnati, Ohio, 1961 In the rapidly increasing numbeT of available studies which emanate from the many committees, commissions, and other bodies active in the field of mental retardation, the problem of the adult retardate is steadily receiving greater emphasis. Unfortunately, no general statistics are available to document the extent of this new social phenomenon, since there never has been an enumeration of the mentally retarded in the community, in this country. Some data are available from institutional sources, indicating a very distinct increase in the life-span of the institutionalized retardate, but caution must be exercised in comparing the picture presented by specific states, because striking variations in admission and discharge practices result in widely differing characteristics of institutional populations. A t least one of the older state commissions 011 mental retardation has selected programing for the adult retarded as the focus for its work in the present year. 1 However, we are not just dealing with an increase in the number of adult retardates; possibly of far greater significance is another new development—the visibility of the adult retarded in the community. 1 C o m m o n w e a l t h o f Massachusetts, Report of the Special to Make an Investigation and Study Relative to Training Retarded Children (1959), p. 4.

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A recently published report of the Wisconsin Department of Public Welfare had this to say: Many mentally retarded adults are now living in our society. Community acceptance of the mentally retarded does exist to some extent. A continuous program of public education and a systematic expansion of services would appear to offer the best opportunity for improved and continued acceptance at this time, and would ultimately facilitate the retention of many retarded individuals within their respective communities.2 T h e reference to public education should be underlined, because it would appear that one of the most difficult problems we are facing in programing in this area rests with the public's image of the mentally retarded. A cursory inquiry among unselected groups of persons in the community would bring forth the fact that when one mentions the term "mentally retarded," the immediate image they see is that of a child, while in a very interesting juxtaposition the mention of the term "mental illness" immediately brings forth the image of an adult. T h e reasons for this are not hard to assess: not only have the mentally retarded been popularly described as "eternal children" or "children at heart," but even now educators and psychologists will use, with regard to the middle group, descriptions such as this—"at maturity they will perform like children of four to eight years." Also, in discussing program needs of the adult retarded, there has been an increasing use of the terms "trainable" and "educable" —designations not necessarily appropriate for adults unless they are used retrospectively regarding their school achievement. We now know that the level of performance in a school situation is not a safe predictor of an individual's performance and general adjustment as an adult. Perhaps one of the major factors which has led to the persistence of this inadequate image of the adult retarded has been our 'Wisconsin Department of Public Welfare, Programs (January, i960), p. 43.

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inadequacy in interpreting his basic functioning as an individual. Therefore, attention should be called to the contribution Cobb has made in an article entitled "The Self-Concept of the Mentally Retarded as an Aspect of Life Adjustment." 3 Time does not permit here a detailed analysis of Cobb's presentation; suffice it to say that he points up that while in normal human development the self-concept reaches a rather stable fruition in childhood, with the retarded this process is slowed down so that before this is achieved, physical maturity comes upon him, confusing the image before it has had time to stabilize. T o quote Cobb: If our aim in programming for the adult retarded is to reduce his dependency by increasing his resources for self-management, we must first of all enable him to see himself as a man or a woman, not merely an overgrown child in a world of adults.4 In his presidential address to the American Association on Mental Deficiency, Tarjan reflected on the common prejudicial view of the mentally retarded, stating: We have rehabilitative, job finding, and welfare programs for almost all people, but the deficient person is excluded frequently. Is he not entitled to the same benefits as any other unemployed adult or aged individual? Recreational, church and other community programs make no special provisions for him and he is forgotten as soon as he is unable to participate in the usual activities. While at home, health resources are also often denied him. Should we not make every effort to support him or render him special services at home, in his own community, among his family members and friends? 6 What then should be administratively the consequence of these new insights? Cobb points here to the need for two-pronged programing. We must first "develop through all available training devices, the maximum resources of the person for self-management, and then through supporting services bridge the gap which • Η . V. Cobb, " T h e Self-Concept of the Mentally Retarded as an Aspect of Life Adjustment," Proceedings of the Institute on Cooperation, Coordination and Improvement of Programs for the Productive Employment of the Retarded (University of Hartford, i960), pp. 5-35. 'Ibid., p. *9· • G . Tarjan, "Prevention, a Program Goal in Mental Deficiency," American Journal of Mental Deficiency, L X I V (1959). 10.

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still remains between his resources and the conditions of the social environment." β T h e first point should result in a thorough reappraisal of our methods in home training and schooling of the retarded child and adolescent, whatever the degree of his retardation. T h a t is a comprehensive task which obviously cannot be part of this presentation. Rather, this paper will direct attention to the needs that must be met in developing the supporting services called for in Cobb's second point. There we will deal with the need for a satisfactory domicile, suitable work or other activity, the social setting, and the need for special services in counseling and guidance, health care, etc. Perhaps the most succinct example of a gap between the adult retardate's resources and specific conditions of his social environment, presents itself when due to death or incapacity of a surviving parent, the retarded adult finds himself deprived of the family abode. He still holds his modest job, which made him selfsupporting, but he does not have the capacity for independence— he needs the "looking-after" by which the parent had enabled him to function in the community. In the past, our official answer to this problem was institutionalization and the service was provided by the state. T o stay within our phrasing, this is a rather extravagant bridging of the gap. Should it not be possible to provide the needed service in the community through a community agency? T h e service needed is to provide a simple domicile, specifically, a room, and that simple quality of "looking-after" formerly provided by the parent. Which agency should provide this service that might be represented by an individual boarding home, or a Y M C A type of group living? Traditionally it was felt that the Mental Health authorities should function here, yet with the new programs of social insurance and other specialized welfare programs, this might well be a responsibility of the Public Welfare Department. Naturally not all domicilary needs of the adult retarded can be met in this fashion. T h e r e may be medical or psychiatric problems which call for different or additional services. Certainly the • C o b b , " T h e Self-Concept of the Mentally Retarded," p. 30.

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existing waiting lists indicate that our present approach to this and many other problems, namely reliance solely on the large centralized state institution, is not practical. Turning now to the need for work or other suitable activities, the new thinking in this area is perhaps best reflected in the following finding of the Indiana Mental Retardation Commission in their report: Occupational training for the mentally handicapped is another aspect of the obligation of the community to its citizens. It is in the American tradition that every person be given the opportunity to be gainfully employed. Achieving such opportunities for the retarded is a further development of the program which we feel should be given consideration and study.7 If one considers that until recently discrimination against the mentally retarded was so commonly accepted that, for instance, quite a number of states, by statute, actually denied the mentally retarded the right of access to medical assistance under the Crippled Children's Act, this pronouncement of the Indiana Commission, which may at first sound rather platitudinous, assumes deep and far-reaching significance. It would call, among other things, for appropriate special legislation required to safeguard exploitation of the retardate, to afford protection to his employer, etc., and of course would make specialized rehabilitation and job placement services a matter of administrative necessity. In this connection, reference should be made to new literature that has come to us from England and the Netherlands (countries with broad experience in the employment of the handicapped) warning about too ready an acceptance of occupation or training centers or workshops which are apt to keep the adult retarded at too low a level of performance, instead of moving him toward employment on the open labor market. 8 Admittedly this will present serious difficulties, because much * State of Indiana, Reports of the Mental Retardation Planning Committee and the Legislative Study Committee on Emotionally Disturbed Children (i960), p. 30. •A. M. Clark and A. D. B. Clark, Mental Deficiency (Glencoe, 111.: T h e Free Press, 1958); N. O'Connor and J . Tizard, The Social Problem of Mental Deficiency (London: Pergamon, 1956); N. Speijer, "Some Views on Sheltered Workshops for the Mentally Handicapped," International Journal of Social Psychiatry, 1959.

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as overprotection must be avoided, exploitation must be prevented. Nitzberg expresses it well when he stresses the need to find a special mode of relating to the retardate, which avoids the pitfalls of infantilization and over-expectation, both of which are easily fallen into with this client. . . . The job is to relate to this client as an adult or adolescent, if such is his chronological age, but as a special kind of adult or adolescent. He is not a child. We must be careful not to perpetuate the very immaturities we seek to mitigate.® For the administrator this spells out a need for a wide variety of facilities, from the nonstructured program of the activity center to sheltered workshops and specific work-training facilities. In this context it should be mentioned that the greater success in foreign countries with ultimate remunerative productivity of even more severely retarded adults probably is related to this readiness to arrange for extensive periods of training, lasting over many years. In our own country the foregoing considerations relate to the so-called Independent Living legislation reintroduced in the present Congress by some of our most distinguished legislators. T h i s broad legislation poses interesting administrative problems as to the extent to which its implementation would fall within the function of the appropriate state agencies in the field of rehabilitation, the field of public welfare, or the field of public health. T h e astonishing and, certainly to most of us, wholly unexpected results achieved in guiding the retarded to productive employment have occasionally brought about inadequate attention to their other social needs. Hence it is appropriate to quote a word of warning from Tizard's writing: There is, I believe, a danger that in their enthusiasm for training centers for older defectives of imbecile grade, some supervisors may overlook the physical and mental needs of their charges. Many adult imbeciles are undoubtedly capable of doing useful, paid work throughout a normal adult working week. On the other hand, like other young people, they benefit from taking part in recreations which exercise their bodies and their minds. Unless great care is taken to see that "J. Nitzberg, "Some Different Emphases in the Role of the Social Worker in a Workshop for Mentally Retarded Adolescents and Y o u n g Adults," American Journal of Mental Deficiency, L X I I I (1958), 95, 89.

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they are not overtaxed during working hours, and that their leisure time is profitably and enjoyably spent, the new freedom which the severely handicapped have won in the welfare state, could easily degenerate into a kind of economic slavery. 10 T h e r e will be little argument with T i z a r d ' s thesis, b u t there is disagreement as to whether it is m o r e desirable to establish seperate recreation facilities for the adult retarded altogether, or whether as m u c h as possible their activities should b e integrated into existing c o m m u n i t y recreation programs. M o r e controversial is another area of social living—that of heterosexual relationships. Several years ago, D u h l posed the question: What happens when the retarded reach maturity, marry and have children? T h e days of indiscriminate sterilization of the feebleminded are almost past, but the problems of assisting the retarded to make workable adjustment to marriage and parenthood are very much with us. 11 Saenger 12 has shown how grossly the c o m m u n i t y had misjudged the sexual involvement of the severely retarded. Still, here is a problem for c o n t i n u e d legislative as well as administrative consideration, but also an area which highlights the need for counseling the adult retardate who lives in the c o m m u n i t y . T h o r n e and D o l a n have specified the particular approaches needed for successful counseling with retardates, which deviates considerably from accepted practices in most c o m m u n i t y counseling agencies. 1 3 Again the question appears as to the appropriate auspices of such a service. An interesting project of counseling retarded married women was recently reported from a Midwestern state as part of a p u b l i c health agency's functioning. 1 4 M J . Tizard, "Research in Mental Deficiency," reprinted from Medical World, July, 1958. 1 1 L . J. Duhl, " T h e Normal Development of the Mentally Retarded Child," American Journal of Mental Deficiency, L X I I (1958), 58g. U G . Saenger, The Adjustment of Severely Retarded Adults in the Community (Albany: New York State Interdepartmental Health Resources Board, 1957). U F . C. T h o r n e and Κ. M. Dolan, " T h e Role of Counseling in a Placement Program for Mentally Retarded Females," in Counseling and Psychotherapy for the Mentally Retarded, edited by Chalmers L. Stacey and Manfred F. DeMartino (Glencoe, 111.: T h e Free Press, 1957), pp. 1 0 1 - 7 . " Μ. H. Parsons, "A Home Economist in Service to Families with Mental Retardation," Children, VII (i960), 184-90.

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Much of the foregoing impinges on the area of the legal rights of the mentally retarded adult, and his status as a citizen, his right to enter into contracts and conduct the daily business of his life, including the spending of the money he himself is earning. A discussion of the broad problem of guardianship cannot be undertaken here. Suffice it to say that the recently released report of the New Jersey State Commission on Mental Health 1 5 has made a most significant contribution to this area with new and imaginative suggestions as to practical delineations in the provision of guardianship of the estate as contrasted with guardianship of the person of the adult retardate, and as to supplementation of private guardianship with a system of public guardianship. Particularly worthy of note is the Commission's suggestion that the imposition of guardianship by court action (that is, declaring the retarded person incompetent) is an unnecessary procedure during the retardate's minority and should be brought up only within a reasonable period before he reaches the age of 21. Many of the points made in this presentation suggest relocation or establishment of public services, and this in turn calls for a basic consideration of the desirable tax base, as is pointed up cogently by Tram berg. 18 T o some persons in our field, the multiplicity of services needed during the lifetime of the retarded suggests a novel and radical answer: the establishment of an omnibus department responsible for all activities under state auspices on behalf of mentally retarded individuals. Three cogent considerations speak against this: 1. This combination health-welfare-education-mental health-rehabilitation-recreation agency brings forth the spectre of the "Jack of all trades and master of none," or to put it differently— quality of service would be sacrificed to convenience of administration. 2. If this should be the proper sauce for the retarded, it equally should be the proper sauce for the blind, the emotionally dis" New Jersey State Commission on Mental Health, Toward Better Mental Health in New Jersey (Trenton: State Office Bldg., 1961). " J . Tramberg, "Future Aspects of State Governmental Programs," American Journal of Mental Deficiency, L X V I (1961), 205-12.

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turbed, the delinquent, and any other group in need of multiple services. T h e result would be an administrative nightmare. 3. Such an omnibus department would run counter to our primary goals inasmuch as it would set the mentally retarded yet further apart from their fellow citizens. T h i s does not at all mean passive tolerance of administrative ineffectualness, duplication of services, or, conversely, lack of or incompleteness of services. T h e Council of State Governments 17 several years ago suggested a clear twofold approach: First—establishment in each state department concerned of an appropriate division or bureau or at least designation of a responsible official in the area of mental retardation. Second—establishment of an interagency committee or other structure to coordinate the functions and the planning of these various state agencies. Quite a number of states have already set up some of these special divisions, and a considerable number of state commissions made such recommendations in reports issued during the past year. Unfortunately, there is much confusion with regard to the second suggestion calling for an interagency body. A persistent trend in our American states has been toward strengthening and streamlining the executive branch of government. T h i s should imply that interagency committees be limited in their membership to units of state government and that they report to the only feasible person available to perform the role of coordinator: the chief executive, the governor of the state. 18 T o expect, for instance, one state department to effectively coordinate the functions of other state departments is utterly unrealistic. Creation of this type of coordinating body of state agencies does in no way interfere with the performance of two quite different types of structures, which indeed have functioned in several states with outstanding success in the field of mental retardation—the Joint Legislative Committee composed of members of House and " New York City Interstate Clearing House on Mental Health, Report and Recommendations of the Conference on Mental Retardation (Chicago: T h e Council of State Governments, 1958). U C . R . Adrian, State and Local Governments (New York: McGraw-Hill, i960), p. J i i .

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Senate (see particularly New York and California) and the Independent Citizens Committee or planning body, which, particularly if established by legislative sanction, can perform unique "watch-dog" services. Any suggestion for extension of services, new legislation, and administrative restructuring is invariably greeted by some with the comment: "Granted this is all most desirable, but how can we possibly afford this?" A look at the realities of present spending is in order: For maintenance of institutional facilities; the construction of new institutional facilities; the expense of special education over and above basic education costs; the provision of such community services as clinics, day care, special medical care, sheltered workshops, vocational training, counseling, and psychiatric care; and, not the least, for the expenses to private families in caring for a retarded individual; the problem of mental retardation entails for the citizens of the United States an annual expenditure of more than a billion dollars on the basis of most conservative estimates. In addition, we must count on a minimum of one billion dollars of lost earnings due either to total incapacity (for the small group of severely retarded adults), or to decreased earning potential (for the large number of moderately and mildly retarded employed adults). Nor do these amounts include the many millions spent on mental retardation research. T h e question of first priority which faces us is simply this: What must we do to convey to our fellow citizens, and in particular to our legislators, a realistic, clear, yet comprehensive picture of why mental retardation is a public problem of the greatest magnitude requiring their attention? If we do this task well, we can surely count on getting the tools we need to serve the mentally retarded entrusted to our care.

Reprinted by permission of the American Association on Mental Deficiency from the American Journal of Mental Deficiency, March, 196s.

15

Developing Patterns for Aid to the Aging Retarded and Their Families There have been many indications during the past several years that we are confronted with a very rapid increase in the life-span of the mentally retarded, but if we look for documentation by statistics, we have to be content with information that is limited to the institutional population. I am indebted to the state authorities in New York and New Jersey for some recent figures documenting the increasing longevity of the more seriously retarded. At the Woodbine Colony in New Jersey, which is limited to this type of resident, the median age at time of death has moved up from 27 years, 6 months in 1951 to 38 years plus in 1959. In New York, figures from the various institutions indicate an increase in the age at death in their imbecile classification from age 28.2 in 1951 to 40.1 in 1959, and in their idiot classification from 15.4 in 1951 to 21.5 in 1959. These changes have been brought about largely by improved medical care, in particular new drugs including antibiotics, and also by advances in general patient care, diet, and so forth. It is important to note that, notwithstanding this marked trend, in most of our institutions residents of all ages are still referred to as "boys" and "girls." Yet one of the most important of the "Developing Patterns for Aid to the Aging Retarded and their Families" is the beginning recognition that the older retardate is entitled to adult status. This new insight, stemming largely from the more progressive work in community facilities for the retarded, reflects a rejection

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of the old cliche which termed a twenty-year-old Mongoloid with an I.Q. of 40 as a "child at heart." Today we recognize that such a person is an adult with a severe mental handicap, but one who may well be capable of performing tasks of reasoning and of expressing feelings considerably beyond those of the child whose "mental age" he presumably possesses. Looking into the future, I do not hesitate to predict that there well be an increasing readiness to accord even the severely retarded a greater degree of human dignity. Last year in addressing the National Conference on Social Welfare on the topic " T o t a l Community Planning for the Mentally Retarded Young Adult," Dr. Henry V. Cobb, himself a psychologist, emphasized that those who are working directly with the retarded in any kind of ameliorative way need, above all, to discover the resources and assets of the person, not merely his limitations. He added to this obvious criticism of present routine psychological evaluation that this was a truism but not a trivial one. I am well aware that there are exceptions to this general observation, particularly in our good private residential facilities, and that indeed in all institutions there is a group of retardates whose devoted service in the maintenance of the facility has earned them a privileged status. But looking at our institutions in general, the indictment must stand, and we cannot expect to make progress unless we first acknowledge its existence. In this connection it was heartening to me to read in the excellent journal Mental Hospitals, published by the American Psychiatric Association, the following statement by a psychiatrist with long experience in hospitals for the mentally ill: We used to believe that the spectacle of 50 to 100 patients, all wearing identical hospital clothes, all looking the same, standing about or shambling around an airing court, was the product of mental illness, and since the illness was incurable, nothing could be done about it except to keep the patients in some comfort until they died. We have now had the experience of seeing what changes are brought about in normal people as a result of herding them together and destroying their individuality. When one saw, after the war, gruesome pictures of the concentration camps, then one saw the further stages in the

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process of destruction of the individual. I am not suggesting that our hospitals have been run like concentration camps, but I do think that this example forcibly illustrates the point that it is not the mental illness as such which brings about some of the changes which have been seen in the chronic psychiatric patient. In the past there has been a tendency to dwell on the potentials of the higher-gTade retarded and their increasing move toward greater independence, while no progress or improvement was foreseen with what has been so sadly misnamed as "the custodial cases." One recent author even suggested that an increase in the number of older more severely retarded should lead to a reduction in psychological personnel. It would be my contention that experience both in Europe and in some places in this country justifies the expectation that we can effect substantial improvements in the performance of the older mentally retarded all across the board, from the present crib case to the trusted institution worker operating with considerable independence, to the older retardate in the community sheltered workshop. Independence, this goal of human existence, comes in a broad spectrum and may mean for the most severely retarded no more than the painstakingly acquired ability to raise one's hand to bring food to the mouth, and for the more advanced individual the privilege of moving about freely in the community. In between these two poles there lies a multitude of opportunity for us to enrich the life of the older mental retardate, and to support his natural tendency to seek gratification, however limited, of his desire toward g r e a t e r i n d e p e n d e n c e .

In the institution this should mean discontinuation of the present degrading mass housing, and a continuous offering beyond school age of stimulating activities, opportunities for self-expression, and at least a measure of respect for one's privacy and individuality. An assumption is often made that one should automatically consider the older retardate as an "infirm" person in need of close medical supervision and nursing care. While this undoubtedly is

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true for some of these individuals, it is emphatically not true for others, and hence strikingly different patterns for institutional buildings, institutional programs, and institutional personnel must be developed as we set about accommodating the increasing number of older residents. As a matter of fact, the question may well be raised as to what extent it would be preferable to accommodate those older retardates who have no particular health problems in a specialized setting closer to their home community, and in a far more informal fashion than is in general provided by our large, all-purpose establishments. I have dwelt in such detail on these aspects of institutional care because it seems to me that notwithstanding the splendid and rapid advances we have made in our communities in affording the mentally retarded an opportunity to live happily if not productively, and notwithstanding the fine work of a few outstanding residential facilities, overwhelmingly the public image of the more severely retarded is that drab, depressing picture which largely confronts us as we travel from state to state visiting institutions for the mentally retarded—and which Dr. Seager has so strikingly characterized in his just-cited article in Mental Hospitals. Yet to eliminate the institution is by no means the answer. O n the contrary. It is quite apparent that much of the progress we should hope for in the coming decades for the older retardate will be enhanced by many new uses of residential care and treatment. When recently the statement was made that "our present knowledge points in one direction: toward programs based on the maximum inclusion of the mentally retarded within the community, rather than as in the past, programs based on the maximum isolation of the retarded from the community," this does not contradict residential care; it merely envisions smaller, communityrelated, easily accessible, open facilities such as are already actually under discussion in several of our states. Some of these facilities may, in fact, not be more than boarding houses with room for six to ten retarded adults; others may combine overnight care with daytime programs attended by other re-

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tarded adults living with their families. Obviously there will be different degrees of care and supervision. Many of the older people are quite capable of "being on their own," traveling about, while others need a more confining, protective care. There will be need for facilities providing full-time nursing care, and others where emotionally disturbed or mentally ill patients receive psychiatric attention. No doubt many of the adult retardates who can adjust to programs in sheltered workshops or protected employment in the community eventually may seek the haven of a less demanding environment such as a residential group care facility can provide. However, the assumption of several writers that the lengthening life-span of the retarded will merely result in a tremendous increase of debile, senile patients for whom nursing care is required would not seem to be a compelling conclusion. Certainly the radical changes in the health of the retarded during the last few years are a product of improved physical and mental hygiene. When we look at decreased mortality rates specifically, we may well emphasize the beneficial results of antibiotics. But when we look at the general health status of the retarded, such factors as improved dietary management, vastly increased opportunities for outdoor activities, and the satisfaction of being allowed to be constructively occupied, no matter at how simple a task, would seem to assume at least equal significance. This then raises an important question. Granted that the lifespan of the retarded is increasing, how much of an increase must we expect? Specifically, must we expect senile debility at 50, or even 40 years of age, in a large number of those who are now adjusting well in community programs? Or can we presume that there is no reason why these individuals cannot remain in good health for far longer periods? It stands to reason that we need very badly the answer to these questions in plotting our long-range programs. T h e difference may mean hundreds of millions of dollars in institutional construction and maintenance costs. T i m e does not permit further discussion of residential care, but

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I would want to list three examples of promising new developments: In one state, an institution has working arrangements with a community sheltered workshop quite a distance away, for the placement and training of a group of older residents. There is, of course, room for a great deal more of such cooperative planning. In at least two other states plans have been completed for hiring, as attendants, former residents who have qualified by training and who will enjoy the privileges of state employees. This will vastly influence the general status of other residents. Finally, a state institution located close to a city in another state has eliminated all visiting restrictions and encourages family members to participate in the actual care of the patient or resident, a move designed to "loosen up" the heavy and debilitating burden of institutional routine. In 1957 the New York State Interdepartmental Health Resources Board published a study by Dr. Gerhart Saenger entitled The Adjustment of Severely Retarded Adults in the Community. Without doubt this study will remain one of the bench marks in the field of mental retardation. In following up the life history of a large number of mental retardates over a considerable number of years, the study furnished definitive proof that the then common belief that the more severely retarded would sooner or later be sent to an institution was quite fallacious. T o the contrary, the community adjustment of the older group in this study, men and women in their thirties and forties, was distinctly more favorable than that of the younger group. What must be kept in mind is that the group here studied was a sample from all those who had attended New York City Board of Education classes for trainable children since 1929, during a period when there were practically no community services set up for the mentally retarded. Without indulging in wishful speculation, it would seem safe to say that if such good results can be obtained without support of agencies, it is fair to assume that with the development of such specialized agency resources, far better results can be expected.

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Adjustment of the retarded in the community is largely dependent on three factors: a satisfactory domicile, suitable work or other activity, and a recreational program. While in all three areas provisions in most communities are woefully inadequate, there is at least a fairly clear understanding of what is needed in the vocational or work area. Work training centers in preparation for employment in the open labor market, sheltered workshops for long-term or terminal protected employment, and selective job placement have all been well developed in recent years. Experience of recent years suggests that a far greater percentage of the more severely retarded is capable of sustained productivity in a work situation than had ever been thought feasible. From my observation of some of the sheltered workshops in this country and in Holland, I would venture to say that we have not yet really established how limited in intelligence an individual may be and still be capable of such productive effort. Of necessity this will have to remain a matter of conjecture for quite some time, since it is safe to say that retardates who are ready for vocational training or job placement now or in the next several years are a product of an unenlightened period in the field of mental retardation. One can well hope that improved home training and improved school programs will produce better training prospects. These statements should by no means imply that, with but few exceptions, retarded adults regardless of the severity of their handicap can be productive workers. Rather, we have learned that their handicap is not adequately described solely in terms of intelligence rating, and that success and failure in vocational training or sheltered workshop is, to a considerable extent, determined by the adequacy of the retardate's general personality and, in particular, his social adaptability. This points up the need for having available for the mentally retarded adult suitable counseling, guidance, and therapeutic services. Opinions differ as to what extent these services should be part of the vocational training center or sheltered workshop, or

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as to what extent services of appropriate community agencies should be utilized. In the latter case there certainly would be need for particularly qualified workers attuned to the needs of the mentally retarded and capable of surmounting fairly extensive language difficulties. For those who, owing either to a too serious lack of ability or to other factors such as physical disability, cannot adjust in a work situation requiring continuous, regular productivity, a different program needs to be established. Such a program neither rules out nor requires a specific work performance, and should provide a maximum of flexibility in order to offer the mentally retarded a haven of security where he will not feel harassed by tasks he cannot tackle and where, nonetheless, there is a constant effort to stimulate him to try for higher achievements. A still different program, open expressly for adults as well as children, was established two years ago in Delaware by legislative action, under the name "day care centers." This service aims at including even the most severely retarded, and to a considerable extent is a program providing relief for the family of the retarded rather than specific training for the retardate himself. There is now pending before the United States Congress a plan for amending the Vocational Rehabilitation Act with so-called independent living provisions, so as to make possible federal subsidy and guidance for rehabilitation programs which are not vocational in nature. There is no doubt but that our main concern must be to keep these various services "fluid," so as to permit an easy shifting of an individual from program to program as possibly may be required. In some communities attempts are made to bring all activities for the mentally retarded under one roof—vocational training, sheltered workshop, counseling service, recreation facilities, and so forth. Those who question this plan wonder whether this would not lead to an undesirable isolation of the retarded at a time when our efforts are directed toward community acceptance. It is probably reasonable to assume that in no community can

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this be an either/or proposition, and that existing facilities have to be taken into consideration as much as the capacity of the retardate to face the more challenging situation of a general community service. One other service should be mentioned here, if only because it is unexpected to those who have not kept pace with the rapid developments in this field: Several adult education departments in the public schools have begun to offer evening courses for mental retardates. In connection with plans for leisure-time activities of the retarded, I would like to call your attention to another problem area that brings puzzlement to many parents, the sex life of the young adult and adult retarded. Dr. Henry V. Cobb comments on this as follows: The whole problem of sexual experience, marriage and family responsibility for the retarded is of course fraught with controversy. We will only remark here that evidence is accumulating to suggest that this is not frequently a problem with the severely retarded. For those at higher levels of physical and social development, sexual frustration may constitute a real problem and requires a wise and sensible management. The frequency of sexual delinquency is probably not appreciably greater among this group than among the general population at large; it is only viewed with greater apprehension. Training and management may well foster control and sublimation, but we may also entertain the possibility of protected forms of marriage just as we do protected forms of employment. Turning now to the third of the general areas of needs I have mentioned, the question of a proper domicile for the retarded, the problems confronting us are a direct result of the longer life-span. With increasing frequency the mentally retarded adult will outlive his parents, and hence will find himself without a home. T h e r e are, of course, those cases where only a parent's devoted care makes it possible for a severely retarded, physically disabled person to remain in the family home. Naturally such a person will need to be placed in an institution when the parents are no longer able to care for him. But there are many others where the situation is quite different,

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where the retarded person is attached in many meaningful ways to the community, to relatives, or to a particular job or activity. For him we must be ready with a different solution, but who is to do the job? Who shall be the innkeeper? It is not realistic to expect brothers or sisters or other relatives of the adult retarded to be able to make room available in their own homes. Certainly no one should have to leave his home town just for want of a bed! Many answers have been suggested, but unless the family has means to make its own arrangements, we have only plans at present—no specific facilities. Halfway houses, hostels, small state institutions near population centers, all these and other ideas as yet lack a sound basis for planning. Here remains a major challenge, an area urgently calling for action. During the past six years tremendous progress has been made in the field of mental retardation—progress at a rate that was quite unprecedented in the history of health and welfare in this country. However, we must be mindful that what the public contributed so generously in funds, what volunteers were ready to do with such enthusiasm, and what legislatures have planned, enacted, and appropriated with such outstanding diligence and foresight was done on behalf of retarded children. In pursuing the objectives I have discussed, we are facing a far more difficult problem, because it remains to be seen whether education of the public will create as favorable a climate for the young adult and the adult retardate as now exists for the retarded child. There is, of course, a group of people who have consistently supported the cause of mental retardation, and on whose continued support we can count, without doubt. But there are others —legislators, government officials, and civic leaders, who would be neglectful were they not to ask us "Is it worth it?" and "Can we justify the expense?" Herein lies a challenge to all of us. It is our job to be sure that we are ready with sound, clear cost accounting; that step by step we can show it pays to give a mentally retarded adult vocational training, that better-prepared, better-paid institutional personnel will save dollars, that a patient who with corrective surgery and

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physiotherapy can be enabled to walk is a patient who requires far less care in the hospital—to mention a few of these particulars. I have no doubt that we can supply these figures, and our cause will be the stronger for it. In 1957 Mary E. Switzer, the distinguished Director of the U.S. Office of Vocational Rehabilitation, had the following to say in an article she aptly titled " T h e Forward Look in Sound Planning": We are in the midst of a period of great progress in rehabilitation— progress on a scale unmatched anywhere in human history. As the interest, the support, the participation of more people and more communities flow into the stream of rehabilitation efforts, you and other leaders in this field are acquiring more and more responsibility to these same communities. For all of us, progress means not alone success in the work we do today, but mounting responsibility for the kind of thought and foresighted planning so urgently needed for sound rehabilitation operations in the coming years.

Reprinted by permission of the Woods Schools from the Proceedings of the Woods Schools Spring Conference on Outlook for the Adult Retarded, i960.

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Income and Social Services for the Mentally Retarded: A Specialized Task for Social Welfare Presented at the Ninetieth Annual Forum, National Conference on Social Welfare, Cleveland, Ohio, May 24, 1963 There are many ways to assess the significance of the Report of the President's Panel on Mental Retardation, its findings and its recommendations. It has so comprehensive a coverage that it can hardly be judged on a unilateral basis; different agencies, different professions, different communities will see its value in different ways. For the practitioner in the field of public welfare, a particular significance of the Panel's Report will lie in its emphasis on the major role played in the field of mental retardation by two programs—the Public Assistance program of Aid to the Permanently and Totally Disabled and the Social Security program of Old Age, Survivors, and Disability Insurance (OASDI). There can be no doubt but that to many workers in social welfare and public health and even to seasoned practitioners in the field of mental retardation it came as a complete surprise to discover that these two programs alone paid out this year almost one hundred million dollars in federal funds to mentally retarded adults (as against only thirty million dollars for all service programs together). If we consider that other public assistance programs, notably Aid to Dependent Children, include a considerable numbeT of both mentally retarded adults and mentally retarded children (exact statistics are not yet available) and also add allowances paid

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to mentally retarded individuals under such programs as veterans' benefits and railroad retirement, it becomes strikingly evident that income maintenance is one of the most far-reaching program areas in the field of mental retardation. It is hoped that this presentation will point up the fact that income maintenance not only serves a very large number of retarded adults but indeed furnishes the essential underpinning for the effectiveness of many other programs. How then can we explain that it took the Report of the President's Panel on Mental Retardation and a subsequently published excellent compilation of the U.S. Department of Health, Education, and Welfare, Mental Retardation Program of the U.S. Department of Health, Education and Welfare, FY 1964, to bring out these facts? Here we need to remind ourselves that up to the most recent past and indeed right to the present time, the field of social work by and large followed the public's static view toward the retarded as a group of individuals segregated from the general stream of life and quite incapable of benefiting from the opportunities and services available to the rest of the population. If this sounds today like an unwarranted, far too broad generalization, let the record speak of the exclusion of the mentally retarded from a broad sweep of services such as child guidance clinics, public schooling, health services, and child welfare. For many people both in the general public and in the field of social welfare, mental retardation meant eventual if not immediate institutionalization. T h e fact that less than 4 percent of the mentally retarded actually are residing in institutions merely underlines the extent of the misconception. On the other hand, those actively engaged and considered knowledgeable in the field of mental retardation, whether as professional workers or volunteers, focused their attention on research, on prevention, and on organized services to the retarded in the fields of health, education, rehabilitation, and recreation, and on meeting the needs of the parents of the retarded for counseling and guidance.

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A review of several dozens of major surveys and reports published during the past decade will bear this out. Actually, the magnitude of at least the Old Age, Survivors, and Disability Insurance program in the field of mental retardation has been a matter of public record since 1958. We (and I am using this "we" advisedly) were just too preoccupied with the aforementioned service programs, with research and prevention, to give this aspect of our field proper consideration. A brief reference to the available statistics is here in order. Of the total number of persons eligible in i960 for the so-called Childhood Disability Benefits, 71 percent were found to be unable to engage in any substantial gainful activity owing to mental retardation. For 1961, this figure is 70 percent. T h e total number of mentally retarded persons receiving these benefits at the present time exceeds 100,000. Mental retardation therefore accounts for more than two thirds of all disability cases under this part of the program. All other types of physical and mental disabilities added together account for less than one third of the case load. These figures alone bear out President Kennedy's statement to the Congress that mental retardation constitutes one of the nation's major health problems. A further complication rests in the fact that many if not a majority of social workers still feel that mental retardation is essentially a problem for the mental health authorities. Administratively speaking, the activities of state mental health departments in this area have by and large been limited to providing institutional care. As was just pointed out, less than 4 percent of the mentally retarded are in institutions—and in quite a few states even these institutions are not within the state department of mental health. On the other hand, community services, particularly those under the new Community Mental Health Services programs, have by and large included only a token share of the retarded. Mental hygiene and child guidance clinics still largely reject the mentally retarded, and in any case most of their staffs are not experienced with this problem.

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This by no means implies that the psychiatric profession and the allied professions active in these clinics have no significant contribution to make in this field. T o the contrary, social workers in programs dealing with the adult retarded will find that many of these individuals will go through periods of severe stress when they face, as older adolescents and in subsequent years, community prejudices, situational pressures (such as in their place of employment), and personal conflicts (for instance, in trying to work out relationships with members of the opposite sex). Here the social worker will look for guidance from the psychiatrist if not for sustained support and treatment for the retarded client from a psychiatric clinic. Unfortunately, the eagerness of the psychiatric profession to maintain control and direction of institutions for the retarded is not matched by a like interest in serving the adult retarded in the community. Indeed, it is practically impossible to gain acceptance for a referral of a retarded adult to a community psychiatric clinic. Here lies a large unmet need. T h e question inevitably is raised: If the psychiatrists are not the ones to assume major responsibility for the problem of mental retardation, which discipline, which agency or professional field can be so designated? T h e answer is quite clear. The problem of mental retardation is far too pervasive to be conveniently pigeon-holed in any one of the professional compartments. In some of its manifestations it is essentially a medical program; in others, one of training and rehabilitation. In one context we must approach it along with the major physical handicaps; in another context it appears as a major socioeconomic problem. Education plays a predominant role during the school years, while we must rely on public health nursing for significant services during infancy and early childhood. T h e stratification of the field in terms of the new American Association on Mental Deficiency classification as between mildly, moderately, severely, and profoundly retarded could be the basis for another presentation of the involvement of disciplines and agencies.

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The challenge that faces the field of public welfare is that through these major income maintenance programs it must relate itself to any and all of the agencies and disciplines whose services are needed. A few examples must suffice. For a considerable time it has become obvious that the traditional institution maintained with state funds must be supplemented by other less formal, smaller, more community related residential facilities. Payments from the two programs here discussed offer us a tangible way to initiate these programs. Vocational and other rehabilitation programs for the retarded have been slow to develop, in part because, in the case of the retarded, the program may require a facility for group living. Income maintenance programs can facilitate this. The markedly increasing life-span of the mentally retarded has resulted in a reversal of survivorship; while formerly the parents were more likely to survive their retarded child, the opposite is true today, and income maintenance payments make it feasible to allow the surviving retarded adult to remain in the community either with relatives and friends of the family or in some type of boarding home placement. OASDI payments have had a very distinct effect on residential programs because enlightened institutions have used these funds to provide residents with opportunities for individualization and social growth, through purchase of personal belongings such as clothing, musical instruments, or even bicycles. These payments facilitate visits to the homes of relatives and friends and in many other ways have enriched the lives of these individuals and enhanced their personal and social development. Under broader administrative interpretations following the 1962 Social Security Amendments, the public assistance programs of aid to the totally and permanently disabled likewise can play a more dynamic role in the field of mental retardation. Manual material in general makes dreary reading, but I wish all of you could acquaint yourselves with the excellent sections pertaining to services for the mentally retarded contained in re-

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visions of the Public Assistance Handbook released by the Bureau of Family Services of the Department of Health, Education, and Welfare in November of 1962 (State Letter 606). Many of the supporting services described there, including the involvement of volunteers, as initiated so successfully in public welfare programs for the aged, could of course be given by the public welfare departments in supplementation of the OASDI benefits, which, are limited to the money payment itself. Considerable interplay must occur not only with other public programs but with private agencies and the voluntary groups who can render significant supportive or adjunctive service. It is obvious from the foregoing that the field of public welfare faces a most formidable task in fulfilling its share of responsibility as one of the major agencies serving the mentally retarded. T o what extent is actual practice catching up with these challenging demands? Considering the newness of these programs it is not surprising that little exact information is available. Indeed, hardly any articles have been written specifically on these programs and little is mentioned in published state reports. In the preparation of this paper, it was possible to make informed inquiries in four states and one regional office of the Department of Health, Education, and Welfare. In general, it appears that the staff administering the OASDI programs are quite well in touch with developments of the Childhood Disability Benefit program as it affects mentally retarded individuals. There was clear recognition of some of the major problems in the choice of payees and also of the extensive need for auxiliary service programs for these adult retardates. With regard to the public assistance program of Aid to the Permanently and Totally Disabled, there was far less evidence of adequate understanding. Even the most essential state-wide statistics were described as "not available," and there was little indication that the excellent new provisions of the Public Assistance Handbook issued by the Department of Health, Education, and Welfare had been reviewed and put to a test. It is significant but not surprising that the situation looked distinctly more favorable in the one state out of these four

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where the public welfare department had a long-standing contact with the problem of mental retardation. In this state there was recognition of guardianship problems, of the many and varied services needed for the retarded, and of their individual need (such as to have the privilege of handling one's own money wherever feasible). This poor showing may be disappointing but it certainly should surprise no one who is aware how long, for instance, it has taken the field of special education to move ahead. Granted that in several of our states we have not as yet specific mandatory legislation, the fact is that after fifty years of developing classes for the mentally retarded, we still have only one fourth of the retarded schoolage children in public school and still have most drastic variations in the quality of these services from state to state. Obviously we must be prepared to engage in a major effort of intensive orientation for administrators, supervisory staff, and front-line public welfare workers if the great potential inherent in these two programs is to be fulfilled. Social workers have in the past shown an overconcern with the emotional status of parents of retarded children and have tended to exaggerate the effect of this traumatic experience of the birth of a mentally defective child on the parents' capacity to fulfill their responsibility toward such children. Some excellent comments have been published in more recent years pointing out that in this regard workers have demonstrated a lopsided misinterpretation of what was essentially a normal reaction of grief. What needs to be stressed is that a good share of the parental concern, or call it anxiety if you wish, has been related to the nagging fear of what will happen to their child after the parents' death. Without in any way detracting from the importance of parent education and parent counseling, programs which should be available to all parents of retarded children, it is quite appropriate to say that once the income maintenance programs together with the related supportive services have come to fullest development, parents will be able to think of the future of their retarded child with a much more positive outlook.

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But this more positive outlook of the parent must be matched by a more positive climate for the mentally retarded in the community at large. T h e seeming rapid shift in the public's appreciation and understanding of the problem of mental retardation in response to the President's inspiring and challenging statements should not deceive us. As yet, we are still facing considerable resistance toward the retarded in our communities; to have full support from the public welfare field in our efforts to overcome the prejudice and discrimination against our retarded citizens will move us forward on that front, too. In this connection I would like to mention a particular aspect of prejudicial thinking about the retarded that can well be related to the otherwise quite descriptive designation "Childhood Disability Benefits." T h e can be a dangerously misleading expression. We are dealing here not with children but with adults. These adults are handicapped, mentally handicapped, and often are demonstrating besides this mental handicap a variety of physical disabilities. Their performance level may be very low and some of their behavior may strike us as very "childish," but a 23-year-old young woman with Mongolism who scored a Stanford-Binet I.Q. of 35 and a mental age of 5% years is certainly vastly different from a 5%-year-old child, physically, mentally, and socially. It is interesting—though certainly disheartening—how loose thinking about this concept of mental age has combined with and reinforced the sticky sentimentality of the popular saying that the mentally retarded are "eternal children." Even reputable psychological textbooks published in the 1960s continue to offer loose and unscientific generalizations about the concept of mental age, such as that a retarded person with a mental age of four will for his lifetime conduct himself like a four-year-old child. In this respect, public welfare workers must be given an opportunity to become acquainted with the remarkable results that have been achieved in sheltered workshops and vocational training facilities for the retarded and in the more recently developed occupation day centers designed for retarded adolescents and

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adults too limited in their performance to qualify for admission to sheltered workshops. The day-to-day performance in these rehabilitation facilities makes the psychological textbook writers look ridiculous indeed, a fate they could have avoided by acquainting themselves with the programs conducted in European countries, particularly England and Holland, which are considerably ahead of the United States in this regard. I am making this point so emphatically because the success of the public welfare programs discussed here will depend on the degree to which those administering these services will embrace a dynamic view toward the mentally retarded as individuals distinctly capable of change, of growth, of self-expression and selfimprovement. This emphasis on a dynamic viewpoint has distinct and direct implications. For instance, whereas in areas of serious physical disability supportive services need to be rendered to prevent loss of capacity, in mental retardation the goal would be in many cases to provide such supportive services to further increase capacity of the retarded beneficiary or client. In a recent paper, Neota Larson described several kinds and degrees of "incapability" the OASDI staff has observed among their beneficiaries, relating this in turn to varying degrees of independence allowed the totally disabled person in the handling of money. I predict that from year to year we will develop greater skill on our part in providing increasing freedom of choice and opportunity for growth for the mentally retarded. And now a final observation: In view of the striking contribution social work is able to make to the field of mental retardation, the matter of appropriate training of social workers in this area takes on much significance. Unfortunately all too little is done in the schools of social work —with a few noble exceptions—and all too frequently one gets the irritated comment: How do you expect us to crowd further courses in areas of speciality in our tightly packed curriculum? This self-righteous defensive attitude on the part of so many

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graduate schools of social work falls far short of the mark. What is desired is not the addition to the crowded curriculum of the graduate schools of special courses on mental retardation. T h e problem lies in the opposite direction: the significant problem of mental retardation and its far-reaching effects on the lives of some twenty million people, namely the mentally retarded and their families, must no longer be ignored or at least practically passed over in the context of a large variety of present courses where it has pertinence. T o put it bluntly, it is the ignorance of the present teaching staffs in the schools of social work which is at the core of this problem and which has led to the ignoring of the role of mental retardation as a major social and health problem as well as an area of serious family trauma. Those of us who work full time in the field of mental retardation do not seek separate treatment of this subject matter. T o the contrary, we want the social work student to recognize the pervasive nature of this problem in the context of many other phenomena in the life of the family, the community, and the nation. In closing, may I quote the following from the Public Assistance Handbook, proof that a manual can be written in good, clear English prose: Public Welfare agencies carry a special responsibility to provide appropriate services, secure diagnostic services, and to evaluate the needs and potentials of their mentally retarded clientele. They are responsible for participating with the total community in developing diagnostic, treatment, training, and employment services for the mentally retarded, and for developing needed social services which support, encourage, and sustain the mentally retarded in areas of f a m i l y

and social functioning.

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Trends and Issues in Mental Retardation A working paper prepared for the i960 White House Conference on Children and Youth " M e n t a l retardation refers to subaverage general intellectual functioning which originates during the developmental period and is associated with impairment in adaptive behavior." T h i s is the defintion on which the American Association on Mental Deficiency has based its new Manual on Terminology and Classification in Mental Retardation. Accordingly, mental retardation will be used in this paper as encompassing all types and degrees of this disability. It should be noted, however, that there is no common agreement on terminology. For instance, in 1954 the W o r l d Health Organization proposed that the over-all problem be termed "mental subnormality" with two major subdivisions reflecting causative factors: mental deficiency for those cases where biological factors have resulted in pathology of the central nervous system, and mental retardation for those cases where the causative factors are in the social, economic, cultural, and psychological realms. Many scientists and practitioners in this country, on the other hand, use the terms "mental retardation" and "mental deficiency" interchangeably while other English-speaking countries have terms of their own. T h i s means that great care has to be taken to establish in discussions or in using literature what particular terminology is involved. T h e r e are no exact statistics available concerning the n u m b e r of mentally retarded in the United States. A proposal to include

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such enumeration in the i960 census had to be rejected because there are available neither sufficiently specific criteria for a clear definition, nor simple diagnostic procedures to apply these to a given individual. Nevertheless, a substantial portion of the scientists and practitioners in the field set the number of mentally retarded in this country in excess of five million, or 3 percent of the population. However, some writers give a substantially smaller figure down to as little as 1 percent of the population. While such discrepancies in estimates do constitute a problem, the source of disagreement does not lie with the main body of the supporting figures but with the point of delineation at which the upper limits of mental retardation are established. T h e normal distribution curve provides for a rapid increment of the estimated number of individuals covered as one moves upward on an intelligence scale. Hence, if one writer uses as the upper limit of those called retarded a Binet I.Q. of 70, while another writer chooses to use a Binet I.Q. of 75, the estimate under the second figure would be about twice as large as that of the first one. During the past ten years, a number of surveys and reports have been published which list in various ways the figures regarding the "known" mentally retarded. It is important to recognize the limitations of such figures. Relatively few preschool retarded children are "known" to agencies, yet we know they exist. Furthermore, the fact that no services are requested for them by parents does not mean that no such service is needed; recent studies (such as Kirk's) have indicated the advantage of early work with the very young retarded child. In other words, it is hazardous and misleading to base program planning mainly on statistics regarding known cases. Availability of good, accessible mental retardation services will result in distinctly more cases becoming "known," and thus in increasing the estimates of future needs. Causation While, in general, there has been no inclination in this country to accept the terminology of the World Health Organization,

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there is general acceptance of the basic premise underlying it, namely the differentiation between mental retardation which is related directly to biological factors and mental retardation that does not indicate pathology of the central nervous system. It is in accord with the general status of knowledge in human affairs that we have far more exacting information about the biological than the socio-cultural-economic causes. One of the outstanding leaders in the field, Dr. George Jervis, wrote in 1957 that "it would be easy to compile a list of some hundred diseases characterized by mental retardation, each one exhibiting its own etiologic determinants." It is important to emphasize here that our knowledge in this area is rapidly changing. Only a few years ago, the mental defect due to childhood schizophrenia would have been characterized as psychogenetically and not biologically conditioned. However, more recent research has pointed to constitutional factors in schizophrenia. Under either category there is no agreement whether this type of case should be classed as retardation or pseudo-retardation. In general, the biologically conditioned and the socio-culturaleconomic types of mental retardation face each other in juxtaposition, qualitatively and quantitatively. The former encompasses a large number of the severe cases but constitutes only a small percentage of all the retardates, while the latter is more typical of milder forms but numerically is by far in the majority. This means, then, that differences in the estimated number of mental retardates pertain only to a limited extent to the primarily biologically conditioned cases, since only a few of them are in the disputed upper areas of functioning. A great deal of confusion exists with regard to so-called environmental influences in mental retardation, since this term is used in two entirely different frames of reference. T h e sociologist will use it with regard to cases where, for instance, lack of a minimum of stimulating influences and emotional deprivation have resulted in an individual's intellectual and social inadequacy. T h e biologist, on the other hand, uses this phrase to differentiate a genetic

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factor, such as is operative in gargoylism, from such prenatal environmental factors as effects of an infectious disease of the mother during pregnancy. Another semantic problem in the etiology of mental retardation pertains to the use of the word "heredity." Not just the lay public, but large numbers of professionals once held the belief that mental retardation to a large extent was directly inherited as a condition present in either the paternal or maternal side. T o counteract this, there has been a tendency in more recent years strongly to deny altogether the significance of hereditary factors. However, others presently use the term "heredity" as synonymous with "genetic" (that is, transmittal through the germ plasm independent of the trait's manifestation in the parent). With the word used in this fashion, the statement "heredity plays a significant part in the causation of mental retardation" is not inaccurate. Within the framework of this brief paper, it is not possible to present a detailed analysis of the many diseases known to produce the symptom we describe as mental retardation. Suffice it to say that besides the genetic factors (classified as endogenous) we may identify three main categories of environmental diseases and injuries (classified as exogenous, and ordered according to the time before, during, or after birth when they are operative): prenatal (e.g., infection of mother, vitamin deficiency); perinatal (e.g., hemorrhage during delivery, irregular oxygen supply); and postnatal (e.g., meningitis, lead poisoning). Classification As indicated earlier, mental retardation varies in degree—from

those so severely impaired as to require permanent full-time nursing care, to those who manage to "get on" in a life situation with minimum demands, but who lack the intellectual resources to face new and more challenging situations. The introduction of the intelligence tests facilitated originally a seemingly exact classification of the mentally retarded into three groupings: the moron (I.Q. of 70-75 down to 50-55); the imbecile

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(I.Q. of 50-55 down to 25-30); the idiot (I.Q. below 25-30). Later, because of the unhappy connotations these words had assumed in the vernacular, the terms "mildly," "moderately," and "severely retarded" were introduced. In the mid-fifties the terms "marginally independent," "semidependent," and "totally dependent" came into usage. At the same time, the educators tried to develop a terminology reflecting prevailing concepts of educative capacities of the retarded, and introduced the term "educable" corresponding to moron or marginally dependent, and "trainable" corresponding to imbecile or semidependent. All these diverse efforts concentrated too much on the factor of intellectual inadequacy (in their dependence on the intelligence tests) and did not sufficiently consider the equally important factor of social adjustment or adaptive behavior. Furthermore, the static concept of a classification based solely on intelligence test performance proved more and more inadequate as evidence accumulated that a given child might indeed substantially improve his rating on the intelligence test as a consequence of specific education and training or a generally enriched life experience. Therefore, the new concepts of a behavioral classification combining "Levels of Adaptive Behavior" with "Measured Intelligence" developed in the Manual of Terminology and Classification in Mental Retardation published by the American Association on Mental Deficiency in 1959 must be considered as a real milestone. Unfortunately, however, the procedure suggested in the manual for implementing these new concepts can only create new confusion because it assigns the entire "subaverage" group to the realm of mental retardation, including what in the past have been known as the slow-learners, the borderline and dull normal groups. Specifically, the manual suggests that on the basis of measured intelligence subaverage should refer to performance which is more than one standard deviation below the population mean of the age group involved. However, if standard deviation of 1.75 to 2

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would be used, this would provide a workable basis for the new classification and more clearly delineate mental retardation as understood today. Obviously the challenge for the next decade will be to test out and develop further this new type of classification in order to provide a terminology which is conceptually sound as well as adequate to encompass prevailing programs and practices in the field of mental retardation.

Whose

Responsibility?

T h e problem of proper identification and classification does not pertain just to the individual afflicted with the condition but to the condition itself. Not infrequently, mental retardation is seen, for instance, simply as a mental health problem. T h e comprehensive knowledge available today should make it clear that such unilateral identification will interfere with sound program developments—whether in practice, teaching, or research. Educators, psychologists, social workers, sociologists, rehabilitation workers, and members of other professions are needed in the field of mental retardation along with the medical and paramedical personnel. T h e extent of their respective contribution hardly can be expressed in a generic rank order; it depends on the given situation and the type of case under consideration. If we think of biologically conditioned mental retardation, the psychiatrist has but little to offer compared with what the biochemist or obstetrician brings to prevention or the pediatrician to early diagnosis. But conversely the biochemist or obstetrician lacks the psychiatrist's competence to deal with adjustment problems of the retarded adolescent. Development of life skills in the severely retarded—specific training in speech or perceptual skills, in reading or word recognition, in work training or play activities—is an area where the educator's skills are needed rather than the physician's. Similarly with regard to causation, we have areas where the sociologist would be the prime investigator and interpreter. W e must be aware of the need for team work among the pro-

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fessions and for maximum flexibility in deploying their respective competences in the broad field of mental retardation. The Role of Community Services A well-rounded program for the mentally retarded requires a wide network of services and facilities because it must provide for the mildly as well as for the severely retarded, and for many different age groups over the life-span. During the past ten years, tremendous progress has been made in communities throughout the country through the establishment of specialized programs for the benefit of the retarded. Yet, considering the numbers of the potential users and considering that we are dealing with a lifetime problem, these accomplishments are only a token effort. Mental retardation clinics can serve as an example. T e n years ago there was no facility available to provide for a comprehensive evaluation of a retarded individual, and for guidance and counsel to his family. Today there are more than eighty such clinics, most of them initiated with funds provided for this purpose by Congress; there are twenty-three located in hospitals, seventeen in local and district health departments, thirteen in special community centers for the retarded, eleven in medical schools, eight in state health departments, three in private schools, and seven in state institutions. T h e main focus of the work of all the clinics is on diagnostic studies, with a secondary focus on parent guidance. T h e service is directed primarily at the preschool group; in 1958, 75 percent of the seven thousand to eight thousand cases seen by the clinics were under nine years of age. Because the federal funds for the clinics come from the United States Children's Bureau to the state health departments, a particular effort has been made to establish close working relationships with other aspects of public health programs such as wellbaby clinics, premature-baby programs, maternity and obstetrical care facilities. Through training institutes for professional workers, through clinical demonstration, and through participation in efforts to educate the public, the clinics have performed a major educational task.

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However, throughout the country last year they were able to serve only seven thousand to eight thousand children. This points up the unmet need for these services in communities throughout the country. Without the availability of specialized clinical services in the field of mental retardation it is not possible to build a comprehensive, coordinated, effective system of community services for the retarded. While it was wise strategy to begin with pediatrically oriented clinics for the young child, clinical facilities must also be available for the school-age child and the young adult, since experience has shown that periodic reevaluation is essential in view of the dynamic character of mental retardation which makes it impossible to assess with a single diagnosis—however comprehensive—the future of an individual's growth and development. In this respect community planners will have to face important questions: T o what extent will it remain necessary to have separate clinical facilities for the mentally retarded? Should broader-gauged clinical facilities with appropriate specialized services be developed for all handicapped children? If so, what would be the respective roles for pediatrics and psychiatry? Will it be necessary to include in such clinics more representation from the educational profession since clinic recommendations will have to relate themselves in many cases to a considerable extent to educational needs and existing educational facilities? In planning clinical facilities for early diagnosis of mental retardation, case finding becomes an essential prerequisite. In terms of direct services this points to the contribution public health nurses and child welfare workers can make along with the physician and hospital personnel in those cases where indications of serious damage are noticeable. Another aspect of case finding might be the maintenance by official agencies of special registries, such as those maintained by public health departments for crippled children. However, in most parts of the country, public health nurses and child welfare workers have access only to a limited number of homes, nor do most families have the services of a pediatric specialist.

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Another aspect of early diagnosis pertains to the multiple handicapped children. In the past there has been a tendency to overlook the possibility of corrective physical therapy with the more retarded child, and there are indeed still states which, as a matter of law or regulation, categorically exclude mentally retarded children from the crippled children's program. Once we begin to deny helping services to those who are deficient, who is to say what degree of deficiency shall justify such denials? Also, children with multiple handicaps are often left out since they do not fit properly into existing compartmentalized programs. An immediate outgrowth of the increased diagnostic services has been the recognition of the importance of guidance for the parents of retarded children. One of the particularly aggravating factors in the problem of mental retardation has been the fact that even the diligently searching parent had great difficulty in getting helpful information regarding the retarded child's capacity and needs. During the past decade, programs of parent education have been developing utilizing a variety of means, such as lectures and film showings, parent discussion groups, and guidance pamphlets such as " T h e Mentally Retarded at Home" (U.S. Children's Bureau), "3 R's for the Retarded" (National Association for Retarded Children), and "Now They Are Grown" (Minnesota Department of Public Welfare). While these programs aim at giving the parent a general understanding of the meaning of mental retardation, the needs of the retarded child, and the impact of the retarded child on the family, there is also need for counseling services providing help to parents in coping with specific problems. Few such counseling services are now available to other than the parent of the preschool child, and there is uncertainty as to under which auspices they should be developed in the years to come. Guidance alone is obviously not enough, particularly for the parent of the severely retarded, often also physically disabled, child. T h e past several years have seen the development of pioneering programs in day care to provide relief to the family from the twenty-four-hour care of the child and in nursery school pro-

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grams to provide group contacts as well as group learning for the often isolated retarded child. Here again, a variety of state agencies and private organizations have set up the demonstration projects, and no agreement exists as to auspices, staffing, and financing. Speaking quantitatively and qualitatively, no other service has as much to offer to the total group of mentally retarded as has the public school system. It is therefore encouraging that the last decade has seen spectacular progress in this area, but also challenging for the decade ahead is the fact that special education facilities are as yet available for only one quarter of the retarded who can avail themselves of them. A particular controversy developed a few years ago as to whether the trainable child was a proper responsibility of the public schools or whether his training should rather be entrusted to welfare or mental health departments. While divergent opinions are still being expressed, the fact that thirty-seven states authorize classes for trainable children either by mandatory or permissive legislation or administrative regulation and interpretation speaks for itself. In some cities classes for the trainables are fully inte grated and are held in the same school buildings that serve all other elementary classes; elsewhere segregation is seen as the more desirable policy. One of the arguments made against public school programs for trainable children is that this group sooner or later will find their way into public institutions. A study by Saenger, The Adjustment of Severely Retarded Adults in the Community, contains convincing documentation that this is a false assumption. Following up a large sampling of pupils who between 1929 and 1956 had attended New York City classes for children with I.Q.'s of between 40 and 50, he showed that only 26 percent were subsequently institutionalized. Twenty-seven percent of those who resided in the community worked for pay at the time of the study, while an additional 9 percent had worked for pay previously. Obviously, such individuals should have the benefit of specialized public school education. A new development pertains to secondary schools for the re-

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tarded. In a few communities such education is now being extended to the trainable group. During the next decade, further attention must be given to testing and developing prevocational programs for these pupils. This is all the more urgent because of the encouraging developments of sheltered workshops, of which more than one hundred offer specialized services for the mentally retarded. T h e experience of these workshops indicates that a sizable group of the retardates eligible for public school services is capable of sustained productive work. This should result in reexamination of public school curricula to determine whether they are designed to develop this vocational potential. An even greater challenge must be faced in the community; sheltered workshops are dependent on production contracts from business and industry. Also, vocational training of the retarded for work in the community is useless unless the community, and in particular employer and employee groups, are receptive. It remains to be seen whether education of the public will create as favorable a climate for the young adult and adult retardate as now exists for the retarded child. T h e success of vocational training centers and sheltered workshops will depend to a large measure on proper screening. Facilities must be developed for those individuals who can make a limited adjustment in the community but are incapable of sustained productive effort. They will require a simple type of activity center akin, in some measure, to the day care programs for the younger children. General observations during the past year indicate a substantial lengthening of the life-span of the mentally retarded, who will thus, in increasing numbers, outlive their parents. This implies a need for some sort of simple residential facility, probably community based. Finally, the presence of an over-increasing number of retardates in the community highlights the need for the development of programs for spiritual guidance and for recreational activities.

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Residential Care T h e least amount of progress in the field of mental retardation during the past decade was made in the area of institutional care. Some of the reasons for this unquestionably lie in the fact that brick and mortar have a tendency of forcing upon a program a "strait jacket." Another inhibiting factor has been a strong antiinstitutional sentiment expressed in low salaries, low allowances for maintenance, and a low esteem for the institution as a helpful agency. W i t h many progressive developments in community care one can expect during the next decade increasing pressure for the upgrading and updating of residential facilities for the retarded. In the process the following issues will have to be met: Shall we continue to build large institutions serving thousands of residents? W h a t is the measuring stick for the "economical size" of an institution—ease of maintenance, flexibility in classification, easy availability of supporting medical services, or the specific treatment and training potential for the individual residents? Is it advisable to combine in one facility groups as widely diverse as severely disabled young children needing full-time intensive physical therapy and nursing care, inactive older retardates in need merely of protective shelter, and adolescents undergoing an intensive socialization and work training program preliminary to placement in the community? Is it reasonable to set general limitations on the size of institu tions for the retarded—less than 1,500, less than 500, less than 50—or must we begin to look at the problem of size in c o n j u n c tion with specific functions, which in turn must be related to the needs of the residents? Is there an upper limit in size beyond which the therapeutic and training potential for the individual resident is distinctly decreasing? As far as the staffing problem is concerned, there has been widespread agreement that the basic employee group, the attendants, should receive a higher compensation to attract "better people." T h e r e has been disagreement, however, wherein this betterment was to be sought. Some point out that one should be aware of

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"overtraining" attendants, as they would become less and less inclined to deal with what they may come to consider "menial" ward routines concerned with keeping patients tidy. On the other hand, better-trained staff might inded bring about some degree of improvement, even with the most severely retarded, and thereby decrease the need for the "menial" tasks. Considerable staff improvements have taken place in the majority of institutions during the past decade, but most of them focused on the addition of new types of professional staff and the strengthening of existing professional staffs. However, a realistic appraisal will show that the weight of the rehabilitative effort rests with the attendant on the wards and in the work groups (if any), and that to a very large extent ward and work routines are far outside the knowledge and experience of the professional staff. Several European countries have demonstrated the feasibility both of distinctly smaller housing units for institutional residents and of insistence on adequate training for the basic staff. It has been customary in this country to speak of the more seriously disabled retardate in institutions as "custodial" cases, implying that "safekeeping" was the only objective with them. The experience of foreign countries and isolated experiments in this country call for serious consideration as to whether custodial care with its implied limited and limiting procedures can be justified. Other problems which require attention are the degree to which the patient's family should be liable to carry the financial cost of institutionalization, the extent to which informal admission should replace present cumbersome, expensive, and in many ways harmful commitment procedures, and the desirability of removing restrictions in visiting days and hours, correspondence, home leaves, weekend visits, and any other means of preserving an active relationship with the family. T h e literature of the more recent years includes quite a number of articles debating the desirable qualifications for the superintendency, the core of the argument being whether this called for a physician, an educator or psychologist, or a specialist in administra-

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tion of institutional management without training in one of the foregoing professions. Within the medical group there has been further argument as to whether or not it was essential for the superintendent to be a qualified psychiatrist. In general, this question has been put on an "either-or" basis, but consideration would seem in order whether this should be related to the proposals for breaking up the present large institutions into more functionally cohesive units. As in other areas of mental retardation, care should be taken not to assume that future planning can be done on the basis of present service statistics, because they are more likely to reflect present practices than present needs or future potentials. A multiplicity of seemingly opposing trends will have to be considered: On the one hand, the lengthened life-span of the institutionalized retarded is resulting in longer occupancy of institutional beds, but the greater availability to families of facilities assisting in the community care of the retarded is diminishing the demand partially. Reduction in infant mortality and the introduction of such life-saving measures as antibiotics increase the number of severely disabled and retarded children, but the greater availability of community services and employment opportunities facilitate return to the community of a greater number of adolescent and young adult retardates. And, finally, the trend toward greater use of residential facilities for intensive training of those who for various reasons are unable to profit sufficiently from community education and training must be taken into account. Legal Status of Che Mentally Retarded Child Insufficient attention has been given in the past to the legal status of the mentally retarded child and adult, particularly with reference to the degree of legal protection required as related to the degree of the mental handicap. A large number of retarded, by far the majority, are capable of moving about in the community, attending school, being employed or participating in formally organized or informal activities, yet, by virtue of their being considered mentally retarded, are considered not to have the minimum

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endowment for an independent life. Conflicting views come into evidence concerning the ways in which this situation is being approached in various ways by our states. Our great valuation of a person's rights and liberty is apt to come in conflict here with a temptation to apply too forcefully the state's inherent guardian function and to deal summarily with the retarded by divesting them of personal rights. T h e existing sociolegal instrumentality of guardianship is a complicating factor since it does not allow for any limited personal guardianship—but results in complete denial of independent legal status. Minnesota has been a pioneer in working out a system of state guardianship for the retarded, administered through the state and county public welfare departments, and proposals of this nature are now under discussion in several other states. At least one authority raises serious question whether such agency guardianship (public or private) does not violate the spirit and purpose of the guardianship concept as a rather personal relationship. 1 Objection also has been raised to legislation which provides for the appointment of a public agency as guardian for retarded children living with their parents in the community. Most recently, the state of Washington enacted legislation providing for the informal appointment by parents of "parental successors," whose task it is to look after the welfare of the retarded individuals after the parents' death. However, Washington also has a formal guardianship appointment through the courts which would supersede the parental successor. Equally under discussion in various states is the role of the superintendent of a state facility, in terms of guardianship functions, particularly during the lifetime of the parents of the child residing at the institution. Other more specific questions need to be explored: What restrictions are justifiable regarding the marriage of mentally retarded individuals? Since an increasing number of retarded young people are earning some wages, what situation should pertain to their property rights? ' I r v i n g Weinman, "Social Aspects of Guardianship," in The Child at Law (Report of the z8th Roes Pediatric Research Conference, Ross Laboratories, Columbus, •958). Ρ· 4 1 ·

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A serious problem regarding the legal status of the mentally retarded has long been the question of criminal responsibility. Present law and court practice does not recognize mental retardation under any name as grounds for legal defense, hence even severely mentally retarded young people have to stand criminal trial. Legislative proposals have been offered to remedy this situation; for example, that such individuals should be brought before the juvenile court rather than the criminal court, or that such persons be committed through regular channels to an institution for the mentally retarded, having first been adjudicated defective. In this frame of reference it is again crucial to recognize the wide range covered by the term mental retardation, and to develop different approaches based on a realistic appraisal of the individual's total capacity.

The Role of Government

in Mental

Retardation

Because the problem of mental retardation has been neglected for so long, there is in many areas no clear precedent for governmental responsibility, as between local, county, and state responsibility, and as between public and private responsibility. As a lifetime disability, mental retardation requires long-term services usually considered most appropriately as the state's responsibility. However, with the growing emphasis on community services, with residential care as a secondary measure, the participation of the local (and/or county) government has increasingly been under discussion and in various places already activated. T h i s brings up a point of vital interest to the community planner: What tax base will be used for the various mental retardation services?

T h e fact that at this time almost twenty states have legislative or gubernatorial commissions or committees active, specifically concerned with mental retardation, is an indication of the urgency of some of the problems posed by the developments of the last decade in the field. Considerable debate is taking place in many states as to which particular state department should be charged with the administration of a given service, a question that is not always easily determined owing to the comprehensive nature of

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such services for the retarded with frequent overlapping into several areas. This has led to proposals that one state department be designated as having major or over-all responsibility for the welfare of the retarded. Some states have already taken or are considering this step, and significantly three different departments have so far emerged as appropriate for the task: public welfare, public health, or mental health. Other states have organized or are working toward interdepartmental committees, but there is no unanimity as to composition and function of these bodies. T h e problem of appropriate governmental organization is particularly difficult regarding services for the young adults. There is ample precedent as to how services should be handled for the preschool and school-age child, but who should manage sheltered workshops of the activity centers needed for those unable to work? Which department should arrange for community residences for young people deprived of their parental home, or for their recreation programs, or for counseling services for young adult retardates for whom existing services would not be adequate or appropriate? In this connection, the question arises as to how services to retarded children should relate to general children's services. Private agencies have an opportunity to pioneer in the experimental new services which will have to be developed to find solutions to the many new problems posed in this field. The Impact of the "Parent Movement" Any appraisal of the present status of the problem of mental retardation, the role and function of the various institutions within our society, and the availability and effectiveness of services offered would be incomplete and indeed incomprehensible without an assessment of the so-called parent movement. T h e corporate structure of this "movement" is the National Association for Retarded Children. It was founded in 1950, as the National Association of Parents and Friends of Mentally Retarded Children, that is, as an organization that from the beginning did

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not limit its membership to parents, but invited participation from the community at large. T h e form, scope, and effectiveness of NARC's activities on the local, state, and national levels constitute a new phenomenon. Originally a do-it-yourself organization, it has now incorporated in local, state, and national offices paid professional staff, but has kept the character of a volunteer organization, with continued independence of the 750 local groups. There is a definite resemblance in spirit to the cooperative movement and, more specifically, to the parent-cooperative nursery schools which have sprung up in so many parts of the country since World War II. It is interesting that N A R C got its start in 1950, the year of the Mid-Century Conference on Children and Youth, which laid such stress on citizen participation, but it is still more interesting that parallel associations sprang up at the same time in some European countries, and are now to be found on all continents. As this national movement now enters on its second decade, questions will arise as to its future role in community planning, in conducting pilot projects in research and training, in relationship to other public and private agencies, and in public education. It is the parents, too, who have insisted that more attention be paid to a field little spoken of ten years ago—prevention. Prevention By control of biochemical (metabolic) disorders, by surgical intervention, by improved techniques of delivery, and by eliminating damaging conditions during pregnancy medical science is slowly but steadily moving ahead on programs dircctcd at preventing a condition that formerly was characterized by hopelessness. Mental retardation has thus become a promising new field for public health action. T o be sure, the conditions in which specific preventive measures can now be taken affect only a very small numerical fraction of the mentally retarded. But, as Dr. Richard Masland has put it: "One cannot escape the conclusion that progress in the program for the prevention of mental retardation will take place by small

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advances along a broad front." These advances in turn rest on the findings of science, in the broad range from cytogenetics to learning theory and cultural anthropology. Research 2 T h e ten years since the Mid-Century White House Conference witnessed a sudden spurt of research activities in the field of mental retardation. Outstanding among them were: the assessment of research needs in the biological and social sciences undertaken for the National Association for Retarded Children by Doctors Masland, Sarason, and Gladwin, reported in book form under the title Mental Subnormality; a widespread, diversified research program supported by the United States Office of Education with funds initially earmarked from its new Cooperative Research Program; a group of inquiries and studies undertaken by the Project on Technical Planning in Mental Retardation, established by the American Association on Mental Deficiency in 1956 with Federal Mental Health funds; and, finally, the "Collaborative Project on Cerebral Palsy, Mental Retardation, and other Neurological and Sensory Disorders of Infancy and Childhood," sponspored by the National Institute of Neurological Diseases and Blindness, with sixteen medical centers throughout the country participating. All this reflects the increasing availability of public and private funds for mental retardation research. In view of the many years of neglect of the field, there is urgent need for acceleration of this research activity on all fronts. In the medical field, the importance of environmental factors, whether inherent in the physiology of the mother herself or in the circumstances and situations in which she finds herself, can undoubtedly be clarified by epidemiological studies, particularly longitudinal studies of the prospective type. Many forms of retardation are due to congenital malformations of the central nervous system; more accurate classification of these malformations is a necessary step. Laboratory studies on animals are also ' T h e lection on medical research ii largely based on material previously prepared by Dr. Elizabeth Boggs.

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necessary to shed light on the mechanisms by which the developing embryo may be adversely affected. Here such sciences as immunology, virology, and toxicology must be joined with embryology. T h e recent discoveries relating to "inborn errors of metabolism" of genetic origin point up the need for further studies of the nature of gene action and interaction with the prenatal or postnatal environment, especially where manipulation of this environment can lead to the suppression of undesirable characteristics to which a genetic defect may predispose the individual. Such studies of both the genetic and the environmental factors are basic to attempts to identify the specific causes of the various clinical entities, such as Mongolism and microcephaly. T h e discovery, in England and France, of an abnormal chromosome completement in Mongoloid children (forty-seven as against the normal forty-six chromosomes) undoubtedly will lead to greatly accelerated research activity into this particular condition. Those causes of mental retardation associated with the birth process which appear to require particular emphasis at this time fall into three classifications. First, the relation between prematurity and mental retardation, although positive, is not understood. Second, the possible damage to the brain due to delays or other interference with the infant's proper breathing in the first minutes and hours of independent life also requires considerably more study. Finally, there is substantial evidence that abnormalities in the composition of the blood in the neonatal period are important determinants of permanent damage resulting in mental retardation and should be further explored. Among the possible sources of damage to the brain after birth, diseases of the circulatory system require more study. A number of common and uncommon childhood diseases may result in inflammation of the immature nervous system of the child, which will leave permanent residual damage varying from slight to very profound. Many different viruses may produce such effects, but do not necessarily do so. This fact very much complicates the research picture, while at the same time pointing up the importance to

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the field of mental retardation of the study and control of many types of viruses. Such a broad program of medical research remphasizes the need for parallel activity in sociological and psychological areas. Yet remarkably little attention has been given to the fact that all cases of mental retardation, regardless of etiology, present a continuing social problem. This problem is multiplied when one recognizes the compelling factor that mental retardation poses a severe social problem not only for the retardate himself but for the entire family group, and in many ways the problem extends into the community at large. This is well exemplified by a question that has been posed in the literature and in practice with increasing frequency in recent years: On what grounds can the physician (or other counselor) base his recommendation as to how a family should handle a problem of retardation once it has been diagnosed, particularly with regard to institutionalization? In this regard Bernard Farber's study Effects of a Severely Retarded Child on Family Integration, published in 1959, has produced important findings of areas of sensitivity in the interpersonal relations of families so affected. From one point of view, his findings can be used presently with appropriate caution in considering the question whether residential care should or should not be recommended in particular cases of severely retarded children. However, seen from another angle, his findings and those of further more refined studies he has suggested should provide important leads for community planners. If we can identify a growing number of tension-producing situations involving the retarded child and his family, we need not necessarily accept these passively as indicators for institutionalization but can proceed to consider and plan for appropriate community services which would tend to bring specific relief to families in these situations. Thus, we would receive important clues as to needed functions, structure and administration of day care services, clinical consultation, leisure-time programs, temporary residential care facilities, and similar supportive programs for families with retarded children and young people.

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There is needed a social and psychological appraisal of differentials in parental attitudes toward the problem of mental retardation as such, toward their own retarded child, toward treatment (in the broader sense, including medical, social, and educational measures) and the agencies providing the treatment, and toward their own continuing responsibility to plan for the future of this mentally retarded child during their own lifetime. All of these factors become more complicated when the mentally retarded child is not an only child and the parents' relationship to the siblings must reflect their planning for this retarded child. It is significant that if these factors operate in a given way and cause the parent to plan on lifetime institutionalization of the retarded child, we are moving from the consideration of a seemingly highly personal matter within the family circle to a situation involving, in connection with institutionalization, the potential expenditure of tens of thousands of dollars of public funds. T h e expansion of medical research dealing with the etiology and prevention of mental retardation must be accompanied by similar encouragement of needed experimentation in research in the area of the education and training of the mentally retarded. It is increasingly recognized that level of intellectual ability is but one of many factors affecting the quality of ultimate social and economic functioning. Secondary characteristics in the form of behavior and attitudes are as important in reference to the ultimate adjustment of the mentally retarded as they are in reference to the adjustment of the the intellectually normal. Since these secondary characteristics are derived from the interaction of the retarded child and his environment, they are amenable to change, and hence are the concern of the educator. In the area of education there is a need for the expansion of research dealing with the effects of early childhood and preschool programs upon the later adjustment of the retarded. T h e r e is a need for experimentation in the area of curriculum development and teaching materials. Comparative studies of the effectiveness of a variety of curricula and materials are sorely needed.

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In reference to the primary characteristic of intellectual development, the results of research point to increasing consideration of intelligence, not as a single unitary process, but rather one which is composed of many factors. There is a need for the development of new diagnostic instruments which will more effectively identify those factors as a basis for the development of specific instructional materials and methods designed to facilitate specific training in intellectual functions. In the area of residential care, there is need for a multitude of closely controlled studies to evaluate the effectiveness of present systems and of "improved" experimental services. In recent years, residential care has included, largely in the blueprint stage, small group care in half-way houses, in group residences within the community, etc. Proposals have also been made for use of institutions on the basis of intensive but temporary training periods facilitating the return of the child to his family whenever feasible, to the end that the institution may serve the family and the child, rather than separate the child from the family. Some excellent studies have recently been published showing how, in our state hospitals for the mentally ill, the power structure from the superintendent down to ward physician, the nursing staff, and then on down to the lowly attendant very effectively interferes with the main purpose of these state hospitals, namely, to cure the patient. Similar studies need to be undertaken in institutions for the mentally retarded to provide guidance for future developments in residential care. W e must further sharpen our understanding of what really happens to the variously affected retarded outside of institutions. More investigations are needed along the line of Dr. Saenger's, referred to earlier, on the adjustment of adults in the community. More penetrating studies are also needed with particular reference to the social, economic, psychological, and cultural factors which aggravate and even cause mental retardation. It is to be hoped, in short, that in the next ten years the behavioral sciences can experience the same quickening, the same reawakening in relation to mental retardation that has brought

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such tangible new results in the biological sciences. If this can be accomplished and if the promises of both fields can be realized, then the 1970 White House Conference on Children and Youth will have a task ahead as stimulating as our own has been.

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Blueprints or Reality? An address at the Golden Anniversary White House Conference on Children and Youth, March 30, i960 In the survey paper "Health Services from Birth to Puberty" which he prepared for this Conference, Dr. Leslie Corsa points up the slowness in the application of new knowledge. I submit that this is due to a multitude of factors which can be quite clearly recognized and to which we have to pay major attention if we want to move more rapidly from mere blueprinting to building the future. Therefore, I shall focus attention here not so much on what needs to be done, already so extensively discussed, but on some of the obstacles which keep us from doing it. T h e first of these obstacles is the lack of research in our field, both basic and applied research. Recently a booklet was published entitled Federal Agencies Financing Research, a listing of all federal agencies and the type of research in which they are presently engaged. This booklet bears shocking testimony to our overconcern with things technical and our lack of concern for things human. Take a look at the index: Administration, Agricultural Research, Air Navigation, Aircraft, Airports, Ammunition, Animal Diseases, Animal Husbandry—this is how it begins. In vain do you look under " C " for child care or child welfare or child health, or anything at all related to children. So on through Communications, Computers, Cryogenics, Data Processing—until you reach Human Resources and think at last that you have come to the nation's most vital resource—the children. But alas, the only agencies listed as doing research on human resources are the Department of the Air Force, the Department of the Army, and the Office of Naval Research. More than three billion dollars are now spent annually by the

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federal government for research, but only a few millions are spent directly for research on child problems. We may say glibly that this is the century of the child—that our concern is first of all with our children—but the national research statistics do not bear this out. Indeed, much of the present federal research on child problems has been brought about far more by the personal efforts of two distinguished Congressional leaders, Senator Hill of Alabama and Representative Fogarty of Rhode Island, than by any pressure from the public. In order to set into motion the many comprehensive research programs that have been presented to this Forum and its work groups as vitally needed, we must make a major effort to bring about public understanding, public acceptance, and public support of the need for greatly expanded research into child health and welfare. This public education campaign must be coupled with a careful, well-documented attack on that evil of bureacracy that goes under the name of governmental economy. W e must convince the public that government economy that builds fancy institutions and then fails to provide adequate staff, that initiates costly therapies but fails to provide adequate aftercare, or that invests millions in services to children but refuses to authorize research to evaluate these services is by far more wasteful than all the foolish extravagant expenditures that make the headlines from time to time put together. This is but one facet of needed public education. Particularly in the field of mental disorders in children, basic community attitudes often militate against remedial and preventive measures. As Dr. Eisenberg brought out so sharply in his survey paper, the community resists acknowledging the existence of mentally ill children. Indeed, one can marshal a good bit of supporting data to show that while in mental retardation the community is by and large ready to see the needs of the children, but does not understand the need for programs for retarded adults, with regard to mental illness the exact opposite is the case. During the past two days we have heard in this Forum and the workshops and have read in the survey papers and fact sheets that

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in many often quite subtle ways the value system of the community, particularly in the field of the mentally handicapped, withholds from children and their parents services they should have a right to expect. One may well ask who has the right to determine whether it is better for the community and the nation to help a slow-learning child to understand arithmetic than to help a severely retarded child talk and be a sociable being. Can we say that it is more important for the average youngster to go to high school than for the severely disturbed mentally ill child to have a basic elementary education? Who is to say that all American children have a right to public education, except those for whom this is not deemed "worth while"? We must set about to remove these barriers, but this effort must be based on careful scientific examination of the origin and nature of these values and attitudes—on studies undertaken by outstanding sociologists and social psychologists. Just as there can be no sliding scale as to how much civil liberty a citizen deserves, so we cannot have a sliding scale as to how much basic education or medical care or recreation handicapped children deserve. Education of the public must then be a major concern of ours, since community attitudes and the value system behind them stand in the way of applying existing knowledge, but as Doctors Corsa and Eisenberg point out, deficient and lagging professional education equally is a stumbling block. There are twelve million exceptional children in this country, and their care and training, as well as the related tasks of detection and prevention, cannot be left to the specialists. The general medical practitioner, educators, social workers, psychologists, and the other helping professions serving our nation's children need basic training in the areas of handicapping conditions, if we are to make full use of existing knowledge. At the same time we must provide for improved recruitment and training to attract more young specialists to the field. Finally, since for many years to come we will face acute staff shortages, we must devise ways and means to use aides and assistants to assume under supervision some of those tasks for which we cannot now

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and will not in the near future find sufficient fully qualified personnel. W e would indeed be well advised to study how some of these problems are solved in Europe, which uses different staff practices. Dr. Eisenberg also points up in his survey paper the present waste of already scarce and overburdened facilities which is caused by the "shopping around from agency to agency" by parents seeking effective help for their children. Dr. Corsa in turn calls attention to the disappearance of the family physician and to the fact that responsibility for coordination and continuity of medical care for children has now tended to shift to the parent. On both these counts we must recognize that next to public education and professional education the matter of parent education must become a vital concern to all of us, worthy of the best professional thought and practice. T h e greatest threat to the parent is uncertainty and lack of knowledge. Once parents have been helped to gain an understanding of their retarded or mentally ill child's problem and of the ways in which this child can be nurtured, their tensions lessen considerably and they can function far better. W e need urgently to establish on a demonstration basis community programs in parent education, under competent professional supervision, as a most vital measure to assist our families long before their problems become so acute as to require extensive clinical services. T h e next obstacle we need to scrutinize is often brushed aside as "just a waste of time." And that is exactly what it is! Unless we can agree on basic terminology, we talk at cross purposes, create "issues" where none really exist, confuse those whom we try to teach and train, and arouse unnecessary objections to proposed facilities and plans of action: T o say it again—we waste time! W e have lost valuable time here at this Conference because the material provided for our use employed different terminologies which contradict each other. W e also found that the term "mentally handicapped" did not convey the same meaning to some as it did to others, and so it is with "slow learner," "emotionally disturbed," and "mentally ill child." T h e r e has been much talk here

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the past few days of interprofessional, interdisciplinary work. It certainly is of the essence, but how can we achieve it if we do not understand one another? There is another side to the terminology problem—the need for constant reevaluation of terms now in use. When the terms "trainable" and "educable" were introduced several years ago, they described quite adequately a basic differentiation educators saw as necessary in developing schooling for the retarded. But practice has moved ahead and today this sharp dichotomy—identified usually by an I.Q. figure—no longer seems to fit our expanding knowledge. We see a new, rather fluid middle grouping of upper trainables and lower educables. Can you say that this is just "playing with words" when their use provokes tensions and misunderstandings in many of our communities and conveys a wrong concept of the problem with which we deal? Working out a new practicable terminology must be the work of several professions working in this field and will require the leadership of statesmen. But we cannot afford to delay it and thereby to delay effective interprofessional and interdisciplinary work. Such interprofessional, interdisciplinary work should not be limited just to the area of terminology. A considerable part of the problem besetting us in our work arises from the fact that for so many years the professions in this field have worked in comparative isolation. All through the speeches and discussions of the last two days there went a thread: "We must work together—we must coordinate—we must economize and avoid duplication." This takes team work as well as team planning. In order to emphasize that this is not just idle speculation let me say that it is indeed most regrettable when, as has just now happened, a group of medical specialists issues a report which shows an ignorance or an ignoring of contributions of other medical specialists, let alone the contribution of other professions. Distribution of such material only retards our progress, produces friction, and allows procrastinating bureaucrats to delay a project "as long as the professionals cannot agree among each other."

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W e need to push vigorously for this interprofessional-interdisciplinary working together, and need to do so on several levels. In the colleges and universities this may result in exchange of courses — a welcome saving in the face of serious shortages of teaching staff and resources. In governmental agencies it can permit selective use of joint staff. In the community it may bring about joint planning and economical coordination of services. We are short of money, short of staff, short of services, short of service facilities— when will we begin to insist on prudent use of the professional resources we have, so that more retarded and mentally ill children can be served? Here let me reinforce Mr. Lourie's plea that we recognize the retarded person's family as the prime treatment resource. T h e r e is ample evidence in studies from other fields that to serve the family as a unit involves exceptional skill but it can also bring exceptional advantages which in the end may conserve professional time. T h e steps here outlined will not result in an increase of services unless we concern ouselves with the basic structure under which these are to operate. Questions of tax support, of federal, state, and local responsibility, and of the relationship between public and private agencies must be a concern of ours because they provide the framework without which we cannot transform blueprints into reality. Enunciation of principles and basic guideposts is important, but that they alone do not suffice is borne out by the fact that today, thirty years after the White House Conference on Child Health and Protection, many of its pronouncements and promises are still unfulfilled, specifically those for the mentally handicapped child. Many of the new services for children with mental handicaps have been initiated under private auspices, which was appropriate, but they are now stunted in their growth because they have reached the point where they must become a public responsibility, and this raises the question of tax support. T h i s may not be an engaging topic to the professional technician and the compassionate volunteer but it represents a reality to which we

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must address our efforts as we leave this Conference, or else thirty years hence there will remain unfulfilled premises and promises. It also implies that we must look for advice and counsel from political scientists and economists in an area where we are not experts. W e need continued action on the federal level. Let us not be confused by the weaseling, weak-kneed pronouncements of "home rule" as a superior principle of government, which so often are merely a superior way of advocating or condoning inactivity. Where would we be today in mental retardation had we waited for "home rule" to set the machinery in motion? Where would we be had it not been for the splendid, courageous, far-sighted leadership of our Congressional leaders who enabled federal agencies, in particular the Office of Vocational Rehabilitation and the U.S. Children's Bureau, to reach out, participate, and give leadership on the local level and help pioneer with vitally needed services? As has been pointed out so often these past two days, one of the most urgent problems facing us is the need for trained personnel from the many helping professions. We can hope to achieve such specialized training nationally only on a regional level, and this points to a continuing and indeed increasing role of the federal government in stimulating and implementing such programs. Discussion in some of the work groups brought out that the participants of this Forum are not unrepresentative of the community at large in that there are those among us who fear that federal support will lead to federal domination of local programs. Shall we just leave this obstacle in our roadway or should we not frankly recognize that if we want to make up for decades of neglect of the retarded and the mentally ill children, we must get federal aid and must make it one of our challenges to work out, together with legislative and governmental aspects, ways and means to let us utilize federal funds with safeguards that will allay the honest fears and objections of our colleagues and fellow citizens? Essential as is the participation of the federal government the main weight of governmental activity in the field of mental dis-

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orders will rest for years to come with the state governments. Only closest coordination of state agencies in the fields of health, education, welfare, and rehabilitation will bring about the governmental counterpart of the team work that has been mentioned by so many of the survey papers and forum speakers. We must therefore look with concern to present efforts to centralize responsibilities for the programs in mental retardation within one state department. T h e r e can be no question but that governmental structure will vary from state to state, based on history, precedent, constitutional provisions, and similar factors. But we should listen with great care to the official voice of the Council of State Governments, which sets forth the principle that it is unrealistic to place within one state agency over-all direction of the state's mental retardation programs. Instead the Council of State Governments recommends a coordinating body (board, committee, or commission) which will not be an operating agency but merely assist the governor as the state's chief executive to ensure best utilization of existing resources in the state. It is not my intention to suggest that each state follow exactly that prescription—but rather that we would do things economically if we take as point of departure this report of the Council of State Governments and then proceed as seems best for each particular state. In doing so, however, we may well hinder rather than advance progress, in years to come, if we think of such governmental reorganization as piecemeal. We may well have to put it into practice in stages, but much of the existing confusion, inefficiency, and poor service in the field is attributed to the fact that makeshift solutions are put one upon the other in a crazyquilt pattern. Just look from state to state and you will see this confusion, which is not conducive to recruitment of competent staff. In some of the work groups I visited the question was raised, directly or indirectly: "Can we afford this?" It is a safe assumption that as many of you bring the recommendations of this Conference back to your state someone will say, " T h i s is a nice program

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but we just can't afford it." Some years ago one of our New England states was in a bad way financially. At least that is what the institution superintendents were told as they requested additional money for badly needed staff, for additional buildings to cope with a growing waiting list, for necessary equipment. "We haven't got a cent to spare" was the state budget director's word. Then nature let loose a flood, destroyed houses, ripped open bridges, broke up miles of highways—damage going into the many millions. I was shocked to think that in view of the state's povertystricken treasury the good citizens would not be able to travel, would be forced to live in patched-up houses and use makeshift foot bridges. Did they? Of course not! Within days repairs started, highways were reconstructed wider and safer than before, bridges rebuilt, towns restored. Indeed, this is what any one of us would have expected. Only when it comes to expenditures for children or the sick and disabled do we suddenly face the " N o cash available" sign. How much longer can we sit still and accept this situation? T o whom can we tum for help and guidance to overcome this inequity? Soon we who are participants in this Conference shall have our blueprints for the future all readied and pulled together. Shall we put them away with moth balls? Or can we think of a more dynamic solution? It seems to me we have one possible lead to an answer—cost accounting. Let us get together with the economists and present to the public the bill we now have to pay for allowing neglect to go on unhampered. Let us present them with clear cost accounting statements as to what can be accomplished by intelligent spending. Let us expose economic fallacies, such as that expounded by a New England professor who objected to spending $800 per year tax money on a school program for trainable retarded children and instead recommended that they be placed in a state institution—in that state at almost twice the costl Of course I realize there are intangibles one cannot measure in dollars—but there is enough that can be done, and doing it should enable us to get help from our fellow citizens.

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I hope the speakers to follow can give some attention to these broad issues that must be faced if we are to make substantial progress in meeting the needs of the young with mental disorders in the next decade. May I now turn my attention to some specific problems. T h e i960 White House Conference Chartbook, "Children in a Changing World," states on page 39 that "no reliable data exist on the prevalence of childhood psychiatric disorders." T h i s statement spotlights the serious neglect of the problem of mentally ill children. Dr. Garrison writes in his reference paper: "Services and educational programs for the severely emotionally disturbed child are pitifully inadequate. While a few experimental programs have been developed state-wide programs are non-existent." It is indeed shocking that seventeen states have no facilities, public or private, residential or day service, for the care of children afflicted with mental illness. In quite a number of other states the existing facilities are most inadequate if not indeed harmful; in many, children are housed with adults. In contrast to the picture in the field of mental retardation, by far the majority of residential facilities for these mentally ill children are under private auspices, with the resultant problems regarding budget admission restrictions and staffing. Lest we find ourselves at the time of the next White House Conference with an even larger number of such children, we must recognize the need for immediate and determined action, leading to the establishment in every state of specialized residential and community programs for these children. While for the mentally ill child we have only a minimum of institutional facilities, in the field of mental retardation the problem is qualitative rather than quantitative. W e continue to spend hundreds of millions of dollars in the construction of institutions which, all efforts of the staff notwithstanding, perpetuate an outdated, ineffectual, and indeed harmful mass regime. In the light of the fact that we continue to add buildings to in stitutions which already have 2,000 and 3,000 children, and are

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planning new ones with similar capacities, it should be sobering, if not indeed shocking, to read in the just-published Manual of Correctional Standards issued by the American Correctional Association that "it has been held that the maximum population for a prison for adults should not exceed 1,200, and some say should be as small as 500." T h e Manual continues: "Any institution operating as a single unit becomes increasingly inefficient and unsafe as its population exceeds 1,200. N o one has ever offered any serious disagreement with these figures, except that many complain that the 1,200 figure, is, perhaps, too large." European countries have long demonstrated the feasibility of small treatment centers. I am singling out this problem of residential programs not because institutional work is more important but rather because, once built, institutions easily have a strait-jacketing effect on progressive programing for decades to come, while community facilities far more readily lend themselves to a continuing dynamic process of reevaluation and reorientation. W e have in this country outstanding institutional leaders in the field of mental retardation, forward-looking men who are eager to test out new ideas. But we shackle their talents and devotion with inadequate buildings, underpaid and hence inadequate staff, poor clinical and therapeutic facilities. I am aware of progress made, but much of it is too limited— one physiotherapist for 2,900 institutional residents can hardly be said to make such service "available." Dr. T h o r n e and Dr. Greenwood have laid down during this conference some good prescriptions to help our ailing institutions. I hope that the recommendations of this assembly will reflect a recognition that before we can go far in "selling" our needs for improved residential care to our communities and our states, we ourselves must become much clearer as to what is needed to fill the varying needs of the mentally retarded and mentally ill. W e need residential facilities in different sizes, in different locations, for different types of residents, and above all we need courage on the part of state govern-

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ments and our established private institutions to experiment with and test some new projects with radical departure from existing patterns. Some of you may feel that I have brought forward a far-tooheavy, far-too-unrealistic order of business. Is this really so? Need we be so timid? Joseph P. Weingold, a distinguished leader in the field of mental retardation, said ten years ago, at the time of the founding of the National Association for Retarded Children: "There may be some doubt as to how much we can change our children for the sake of the world, but there can be no doubt as to how much we must change the world for the sake of our children." Only if we have the firm resolve that we stand ready to change the world for the children entrusted to our care can we expect to reap the rich harvest which should come from this magnificent national effort, the Golden Anniversary White House Conference.

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Community Organization for the Mentally Retarded Barely six years ago the problem of mental retardation was suddenly pushed to the forefront after many decades of almost total neglect. Today in more than seven hundred communities groups of parents and friends of the mentally retarded are organized; a majority of the states have initiated legislation making possible public schooling for retarded children once considered totally unacceptable; in some forty states, state health departments have instituted clinical programs for the retarded; funds from the federal Office of Vocational Rehabilitation have become available throughout the country for pilot projects in the rehabilitation of the retarded; and the Office of Education has sponsored a comprehensive, many-faceted research program to explore new approaches to the schooling of these children. Outstanding leaders in Congress have taken a personal interest in securing appropriations for these programs, while many legislatures have set up commissions to investigate the adequacy of services to the retarded in their states. Similarly, councils of social agencies and other civic bodies have surveyed the problem and developed blueprints for action. As Stanley P. Davies puts it: "Once considered a threat to the social order, those today known as retarded are now seen less as liabilities and more as potential assets, calling upon society not so much for control as for skilled help." 1 Widely accepted estimates indicate that there are in the United States five million retarded children and adults, constituting about 3 percent of the population. The size of this estimate is of course related to the definition of mental retardation which has been used to arrive 1

Stanley Powell Davies, The Mentally Retarded University Press, 1959), p. 3.

in Society (New York: Columbia

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at it, and hence it is important to stress that no single definition has been generally adopted, with the result that figures will differ materially as the definition is broadened or narrowed in a given study. There is substantial agreement that mental retardation relates to a level of intelligence markedly below the average, in conjunction with a developmental disturbance, and resulting in a degree of social inadequacy that requires special assistance. Until a few years ago the terms "idiot," "imbecile," and "moron" were in general use to describe different degrees of mental retardation. A survey report of a Community Welfare Council issued as late as December, 1956, states that while after World War II these terms were abandoned because of colloquial harshness and ridicule, they were nonetheless quite precise in their meaning, and described people quite accurately.2 Such a viewpoint is no longer acceptable in the light of the findings of recent years, which are well expressed by another community survey made in 1958: A more tolerant and hopeful attitude is perhaps the most important of current trends. Another is increasing attention to individual characteristics. There is a growing recognition that the I.Q. does not tell the whole story of potentials. Development of assets that come from good personality and wise home care help the retarded to make the maximum use of his potentials, for every small gain the retarded can make is significant and counts for much more than it would for a normal individual. Consequently . . . much attention is now given to developing wholesome personality and a social outlook. With the slow realization that some 95 percent of the retarded live at home and will remain in the community, there is far more interest than ever before in building up local services. Improved and extended facilities are designed to prepare as many retarded children as possible for a future as contributing citizens.8 T h e factors that have contributed to this changing viewpoint are lucidly presented by Drs. Sarason and Gladwin in Part II of Mental Subnormality * the report of a survey sponsored by the National Association for Retarded Children ( N A R C ) . These au• O u r Mentally Retarded (Minneapolis: Community Welfare Council, 1958), p. 4. • J u n i o r League of Raleigh, N.C., Our Retarded Children (Raleigh, N.C.: the League, 1958). p. 9. 'Seymour B. Sarason and Thomas Gladwin, Mental Subnormality (New York: Basic Books, 1959).

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thors present evidence to question the common assumption that the level of problem-solving in test situations is the same as that in nontest (or real life) situations, particularly in the case of the mentally retarded. Similar points were made at the W H O sponsored European Seminar in Mental Health of the Subnormal Child, in Oslo, in 1957, when Dr. Tizard, of England, reported on studies which showed that from 10 percent to 20 percent of imbeciles would find eventually their way to schools for debiles (morons), while twice as many debiles would move up to the dullnormal group; that is, they would actually perform considerably above original test results. Hence, in planning community services for the mentally retarded we must be aware that the former convenient criteria of definitive degrees of intelligence need to be replaced by more dynamic and fluid criteria based on levels of performance. W e must also recognize that while a retardate's performance in one area may indicate a considerable degree of selfsufficiency, in another area he may be quite unable to function. T h e point, then, is that as we plan for the mentally retarded we are dealing with a heterogeneous group, not just in view of the broad array of biological, psychological, and cultural causes and factors and of the striking differences in degree of mental retardation, but also in view of the striking individual differences within the various groupings, and the actual upward movement toward higher performance levels of which considerable numbers of the retarded seem to be capable. T h e old classifications of "idiot," "imbecile," and "moron" and their more modern counterparts, "trainable and educable," "severely, moderately, or mildly retarded," were, in conjunction with our rigid concepts of expected performance, much too confining. T h i s was set forth in 1956, when Dr. Richard L. Masland, then Research Director of N A R C , pointed out that some people feel there is no use working with a child unless we can make him a useful member of society. We set up OUT own standards of achievement as objectives and tend to concentrate our efforts on those individuals most likely to attain these objectives. Many programs have failed because they thus squeeze out a group considered not worth

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working with. Actually, our program must provide for each child the opportunity to achieve his maximum.8 It is grossly misleading to use the term "retarded children" in referring to the entire group of retarded individuals. T h i s has been done in the past quite deliberately and without ill intent; after all, did not the psychological tests prove they had only the mental age of a child? However, we now know that a twenty-yearold Mongoloid with an I.Q. of 40 does not have the mind of a child, nor is he "a child at heart." He is an adult with a severe mental handicap, but he may well be capable of performing tasks, of reasoning, and of expressing feelings considerably beyond those of a child. T o do him justice we must plan for him as an adult. Good community planning has long recognized the importance of looking at the family as a unit, of considering the child in the context of the family situation. This has particular significance in the case of the mentally retarded, as summed up by the Mental Retardation Study Committee of the Richmond Area Community Council: A special burden is placed upon the parents and the family of a mentally retarded child. They face many, many years of providing total support for their child beyond the normal dependency period. The emotional strain may be even harder to bear—the disappointment, the despair, the inevitable problems that result if there are also normal children in the home, the attitude of friends and neighbors, the twentyfour-hour supervision of a child who must be confined to the home. The parent of a mentally retarded child has a very different problem from that of the parent of a physically handicapped child who is able to compensate for his disability because he has the most basic of all resources, normal mentality. We now realize that it is not fair to expect the parents of the mentally retarded to bear alone this special burden.® Unfortunately, however, parents of retarded children are often refused certain public services for which they have paid local taxes, • " N e w Directions for Mentally Retarded Children," Report of a conference convened by Josiah Macy, Jr., Foundation (Princeton, N.J.: the Foundation, 1956), p.

139· 'Report of Mental Retardation Study Committee of the Richmond Area Community Council (Richmond, Va.: Virginia Association for Retarded Children, 1957), p. 4a.

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and are obliged to pay if such services are given their child in a state institution. In other cases, a service is arbitrarily limited in length of time. Sound community planning must extend beyond the needs of the mentally retarded individual to the special needs of his parents. A well-rounded program must provide for the mildly as well as for the severely retarded, for those in the community as well as for those requiring residential care, for the young and for the adult. A comprehensive community program must also provide for continuity, since the needs of the retarded shift as he moves from developmental stage to developmental stage. It is definitely not enough to provide clinical evaluation merely for the preschool child; provision for periodic evaluations is essential. For those capable of any degree of work, continuity of programing from schooling into adult activity must be maintained. A residential facility is ill-used unless it is functionally linked both with a preadmission program and with a social service that is effectively continuing the community's responsibility for the institutionalized person, to a degree appropriate to his condition. A community's program must, furthermore, adequately provide for the total needs of the retarded person. Lest this statement be gravely misunderstood, let me hasten to emphasize that in our context of broad planning the family, of course, ranks as a major community resource; one that normally must be counted on to assume major responsibility for the retarded person's needs, to participate actively in planning, to stand by in emergencies, and, indeed, to shoulder a reasonable share of the expense of his care. There is no thought here of proposing that a family may simply turn to the community in the expectation of being relieved of all the daily burdens occasioned by retardation. But by the very token that the family is one of the community's major resources it is an essential requisite in social planning that this resource not be overtaxed and overburdened to the point of eventual collapse— not only resulting in the loss of a vital resource but turning it into a liability which in turn will produce added community problems.

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As we plan for the total needs of the retarded it becomes clear why, for instance, the establishment of a sheltered workshop must be correlated to the creation of at least a minimum program of recreational services for the workshop enrollees. Indeed, the absence of such a recreational opportunity would seriously detract from the value of the community's investment in the workshop. Both these services, in turn, need to be supplemented by a counseling service somewhere within the community, so organized and staffed that it can meet the special needs of the retarded adult. Obviously, not all these needs can be provided for at once; the main point is that they be made a definite part of the community's over all plan, and not just an "if, as, and when" appendix. Considering the large number of the mentally retarded in any community, considering their need for lifetime services (except in the case of those who have the capacity to pass into the "dullnormal" group), and considering the tremendous variation in the services they require, it is not surprising that the community welfare council of a large Midwestern city found that in 1956 there were nearly twenty-five different agencies serving mentally retarded children and adults. Naturally, in smaller cities and in rural areas there would be far fewer agencies involved. Even there, however, the need for coordination would be of paramount importance because of the permeating effect of mental retardation, which requires services from social work, health, mental health, education, recreation, law, and other areas and disciplines which are not necessarily on speaking terms with each other. One

acutc p r o b l e m situation, observed

in q u i t e a f e w

com-

munities, is that of programing for the so-called trainable children who are too severely retarded to be included in the special public school programs for so-called educable retardates. Considering that but a few years ago these severely retarded children were almost universally excluded from public education of any kind (a fact that largely contributed to the rapid development of the parent movement in this field), it is not too surprising that there is much confusion and controversy as to what should be done and by whom.

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Briefly, the major disagreement concerns the question whether these trainable children should be cared for under public school or under welfare auspices. Dr. Ray Graham, Assistant Superintendent of Public Instruction for the state of Illinois, calls attention to the fallacy of trying to put the entire program for these children under the schools merely because they are the best example of the public assumption of responsibility at the local level, have a great deal of autonomy, operate under definite legislation, have legally selected officials, and have access to tax funds. He stresses that it is unsound from a long-range viewpoint to saddle an agency with a problem merely because organizationally and administratively it is most convenient, with little thought given to the functional value of the service that needs to be rendered. Conversely, certain educational leaders, proceeding from their own premise as to what is education and who should be entitled to it, have drawn a sharp and arbitrary line of demarcation that would place all trainable children as a group beyond the realm of the educator's responsibility, with the added unilateral declaration that it is "welfare's job" to care for these children. What needs to be emphasized, of course, is that no agency, whether public or private, may shed its responsibility by assigning a problem summarily to some other agency. T h e care of trainable children has many aspects, involving of necessity a number of agencies, and it would seem to be a primary duty of community planning bodies to help determine the responsibilities that specific agencies should assume and to foster effective, cooperative, interagency relationships. Only thus can a comprehensive and balanced program be worked out for these children. As was already pointed out, in a space of but a few years there has been a sudden surge of new services for the retarded, sponsored by federal, state, and national agencies, in health and rehabilitation, social work, education, and recreation. In many instances, the services were offered not only in new settings, but to a client group that previously was almost unknown. An additional impediment stemmed from the fact that the various professions manning these services had no common language or common

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body of knowledge from which to draw. Some of the community surveys planned their work on a broad interdisciplinary base and have paved the way to more effective coordination and cooperation. Other surveys have adhered too closely to the field of social service proper and overlooked the essential connection to the other disciplines involved in mental retardation. This would seem to highlight the fact that community organization for mental retardation must be two-pronged. The first is the direct work with the local agencies, organizations, and groups in what may be called the "conventional" efforts toward coordinated and cooperative planning and programing. The other is a secondary but essentially more basic effort toward achieving among the various professions from which the local agencies and organizations draw their personnel at least a minimum understanding of their respective premises, if not actual agreement on such fundamental matters as terminology based on these premises. Obviously, this is not something a local community organization group can accomplish by itself, no matter how all-encompassing its operational and membership base. Rather, this need points up how vital it is for the local groups to see to it that their efforts are coordinated with those of national organizations in the field of mental retardation. Unfortunately, a rather misplaced parochialism on the part of community planning bodies is becoming more and more evident in all parts of our country. While it is of course most desirable, if not essential, that local services not just be administered but also be planned on the local level, the battle cries of "Jonesville knows best what Jonesville needs" and "Let Jonesville money stay in Jonesville" have led to a rather unfortunate unwillingness on the part of communities to support useful activities of national organizations. Particular mention must be made of this because of the many involved problems of interdisciplinary communication and broad patterns of structure and organization of services which still need to be worked out in the area of mental retardation. A particular aspect of community organization for the mentally retarded is posed by the role of the many associations for retarded

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children that have come into existence. From rather slow and modest beginnings in the late 1940s (two of these organizations go back to 1933 and 1938 respectively), this movement gained tremendous m o m e n t u m after a meeting in Minneapolis in 1950 when N A R C was founded by action of the existing local groups. T o d a y N A R C has in membership more than 675 local and state organizations, active in every state of the U n i o n as well as in military installations on foreign soil. A recent survey report of a local welfare planning council had this to say about this new development: . . . parents' societies [associations of parents of the retarded] in the space of a few years have proved themselves of tremendous value by their public education programs, by their pinpointing the needs of the retarded in their communities, by aiming at long-range goals through demonstration projects and through research at local, state, and national levels. It has been demonstrated that parents' groups out of their own deep convictions and out of some unhappy experiences have been instrumental in developing the interest of many other groups in communities in the needs of the retarded and have undertaken under their own aegis some special demonstration projects when the local facilities have not existed. Last and by no means least, the parents' societies have had a very real personal value to their members because of the fact that as parents they could get together, that they could have the opportunity to come close to and share with those who had similar problems, that they could overcome the isolation that some of them had imposed upon themselves when they learned that they had a retarded child. 7 It is important to emphasize that while this movement has remained parent-inspired, national policy from the beginning provided for membership by "parents and friends of the mentally retarded," and this was indeed expressed in the original name of N A R C , changed to its present form for brevity. T o d a y most of the local organizations include nonparents, and in many cases such persons hold important offices. Another significant facet of the parent movement is the increasing use of professional staff on 7 Report of Committee on the Retarded (Miami, Fla.: Welfare Planning Council of Dade County, 1958), p. 23.

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local, state, and national levels. T h i s not only enables the local groups to function on a professional basis, but makes it possible to render services to the community at large, such as visits from specialized N A R C consultants on sheltered workshops, educational programs, residential care, public education, and so on. However, a significant part of the N A R C program has remained the work of volunteer committees, recruited of course, from the local associations. These committees concern themselves with broad problems of staffing and support of programs, and have produced data not available elsewhere. O n the national and state level, and often also locally, the associations have become clearinghouses for information on facilities and services for the mentally retarded. Perhaps the most significant contribution has been the establishment of pilot and demonstration projects by the many hundreds of local associations throughout the country. These range from school classes to specialized diagnostic clinics, from sheltered workshops to summer camps, from day care centers to parent discussion groups to recreation programs for young adult retardates. Many of the programs have been taken over by public or private agencies, thus making it possible for the particular local association to move on to some other needed service. It is significant that in quite a number of states legislative committees or commissions have been established to study existing programs and unmet needs in the field of mental retardation, with official representation from the state association for the mentally retarded. In some instances, representatives of the state association are now serving as trustees of state institutions for the retarded. It is not surprising that there has been at times a distinct reluctance on the part of social agencies to welcome as partners parent representatives from local associations for retarded children, since formerly they were seen as clients only. However, there are now on record examples of close, fruitful, and continuing relationships between these groups in a new and challenging form of citizen participation. N o community organization interested in retardates can afford to forego this cooperation.

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Frequently the question is raised as to whether it is really necessary for a community to develop special services for the mentally retarded. There are many reasons why this may be necessary at this time. First, it is highly desirable to have neutral settings where new forms of service to the retarded can be demonstrated. After neglecting this problem for many years the older agencies are hardly in a position to give adequate attention to it now. Once useful methods have been established in specialized settings they can be reviewed at a future date to see what advantages would accrue by integrating the services into existing agency structures. Another point which needs careful consideration pertains to the appropriateness of the particular agency which is to absorb a pilot or demonstration program for the mentally retarded. T h e misconception is often expressed that mental retardation is just an aspect of mental health and hence its services can be included with those of mental health facilities, clinics, and associations. This is an erroneous assumption and ignores the many other facets of the problem. Mental retardation is also an educational problem, it has important health aspects (pediatric, orthopedic, neurological), and it involves many other areas in a significant way. T h e foregoing is not intended to imply that it it is not feasible to develop joint services. T o the contrary. There are already in operation successful projects in vocational rehabilitation, recreation, and education which include other handicapped persons along with the mentally retarded. In each case, however, there has been thoughtful joint planning, close observation during a testing period, and careful attention to the special knowledge and skills required from the staff. Conversely, however, merely to open an unused room in a sheltered workshop, or just to add another psychologist to the child guidance clinic, or to ask a community center to provide space for a recreation program, falls far short of adequate planning for the mentally retarded; yet these expedients have been suggested all too often. There are no pat answers to the question of specialized versus integrated services. It might be desirable to include services to the mentally retarded in an agency dealing with neurological dis-

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orders. Again, it might be appropriate to combine certain services with related services for the mentally ill or for handicapped people in general. On the other hand, consideration must be given to the advantage of having the many facets of mental retardation services at least coordinated through one clearly identified agency—not just for public relations purposes, but in order to provide a comprehensive base for observation and training and for research. T h e need for staff training is obvious. T h e Welfare Planning Council of the Los Angeles Region reports that the staffs of the major local family and children's agencies are baffled because of their own lack of familiarity with the field of mental retardation . . . many times they do not feel competent to discuss with parents the problems of care and training. . . . This is not surprising. W e are living in a time when new knowledge about mental retardation is produced with great rapidity, when the attitude toward the retarded child is shifting. . . . Our newer knowledge and attitudes have not been made part of professional education for social work to any extent. Few workers have developed professional skill in helping parents of a child who is retarded to handle the day-by-day care of the child, to protect the mental health of other children and of themselves, and to make long-time, but flexible plans for the retarded child. 8

This is a thoughtful, straightforward statement, but we cunnot stop there. As another community welfare council observes: T h e r e are evidences everywhere of trained personnel shortages in these programs. . . . Recognition of the need for particular programs does not produce trained people. T h i s is one of the most serious barriers to more adequate care of the retarded in the immediate future.®

Local community organization councils must recognize that they and their member agencies must help tear down these barriers. No local agency can expect to receive a steady stream of well-trained, well-experienced professional workers if it does not contribute financial, moral, and political support to, as well as active participation in, graduate training programs. Facilities for graduate training and for research need a high 'Everyone's Children (Los Angeles: Weltare Planning Council, 1957), pp. 2S-»J. 1956, p. «7. • Our Mentally Retarded,

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degree of coordination if not integration. For that reason alone long-range community organization must include plans for strengthening research programs. Furthermore, the research should be adequate and in appropriate relationship to the needs of the community. Too often research in mental retardation is identified with medical research. This is a serious misunderstanding. The medical profession has a highly important place in mental retardation research, and some of the most exciting advances of recent years have come from that source. But there are many questions on which the physician is not the primary expert, and we must look to other professions for significant contributions. Ultimately, it is the public that must both demand and make possible the strengthening of existing services and the creation of new facilities. We must face the fact, however, that a program's success does not necessarily increase the public's sympathetic support. As a matter of fact, it may be that as the case of the mentally retarded becomes less appalling, the cause of mental retardation becomes less appealing. This calls for thoughtful review of public education efforts and the role the local community should play in it. As a lifetime disability, mental retardation requires long-term services usually considered most appropriately the state's responsibility. However, with the growing emphasis on community services, with residential care as a secondary measure, the participation of the local (and/or county) government has increasingly been under discussion and in various places already activated. This brings up a point of vital interest to the community planner: What tax base will be used for the various mental retardation services? Similarly, the community planner will be interested in legislative developments toward determining which particular state agency should be responsible for a given service. Obviously, these matters will depend to a considerable extent on the existing structure of agencies in a state and hence are not subject to definite prescriptions. However, neither should they be decided on the basis of momentary convenience. State governments are heavily

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involved in standards setting, licensing, consultation, and subsidies, and communities can ill afford not to be concerned with this type of administrative or legislative policy-making. Important as government services may be, there will remain a c o n t i n u i n g need for voluntary services, both through the health and welfare agencies and through the local associations for retarded children. T h e r e has been a lot of talk about the "whole m a n " approach to health and welfare problems and about the disastrous consequences if specialized voluntary community groups center on one disease only. Whatever validity there may be to this argument, it does not fit mental retardation, which is but a collective name for nearly a hundred different conditions and necessitates a w h o l e network of related services. It is significant that many local associations for retarded children participate in federated f u n d raising. It is also significant that many c o m m u n i t y chests and united funds have either refused to admit the associations or have set up unreasonable entrance conditions (such as denial of support for N A R C ) , or so severely limited financial support as to make joining the federated effort detrimental to the welfare of the mentally retarded. C o m m u n i t y planning bodies may be well advised to allow associations for retarded children an opportunity to develop their program and prove their service potential before trying to pressure them into traditional patterns of agency organization. T h e procedures of these new groups may at times be at odds with conventional agency practices. Nevertheless, it was these associations which

opened u p

the

field

o f mental retardation after years of

neglect and developed new and dynamic methods of citizen participation. By any method of cost accounting it will become evident that the funds the A m e r i c a n public has contributed to the associations for retraded children have been an unusually prudent and successful investment.

Reprinted from National Conference on Social Welfare, Community Organization, 1959 (New York: Columbia University Press, 1959).

20

Cooperation Among Voluntary Health

Organizations

A report to the National Institute of Services for Handicapped Children and Youth, March, 1963 One of the great strengths of the American system is the grouping together of citizens to carry through necessary social tasks which are beyond the sphere of governmental agencies. In these voluntary groupings they watch over the education of their children, the growth of their communities, and heal some of the wounds inflicted by joblessness and dislocation. In the form of cooperatives they spread the sense of ownership and act as a watchdog against monopoly prices. In the form of labor unions they bring a sense of security against unfair treatment to millions of workers, and help protect their incomes, health and old age. All of these elements are vital and necessary parts of a functioning democracy. These groups embody the sense of civic responsibility. They are humanitarian in their purposes and democratic in their methods. T h e American system would hardly be the kindly operation that it is much of the time if these voluntary groupings of citizens were to falter and disappear. 1 Visitors to the United States are forever astonished at the influence of voluntary organizations on the public life of the nation. In the past few decades, much of this interest has been focused on voluntary health organizations. Indeed, they have not only attracted the attention of foreign visitors b u t within o u r own country have been the subject both of g l o w i n g praise and of sharp condemnation. In her presidential address to the National H e a l t h Council's annual meeting in 1955, R u t h B. Freeman pointed out that volunteer organizations in the field of health need to b e seen not ' F r o m Stephen Raushenbuih, The Challenge ington, D.C.: Public Affairs Institute, 196s).

to the Alliance

for Progress (Wa»h-

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only in relation to their individual purposes, needs, and values b u t also as they relate to other health organizations. She stressed that our many health organizations function in constant interaction with each other and also w i t h the general environment. T h i s paper will deal in particular with that interaction on the part of these organizations that is m u t u a l l y pursued toward some specific goal. In this discussion w e shall adopt the National Health C o u n c i l ' s definition of national voluntary health agencies as being composed of individuals, both lay and professional, or associations of both lay and professional individuals; voluntarily and democratically organized on a national basis; the primary or major purpose of which is health related in that they are organized to combat a particular disease, disability or group of diseases and disabilities or to improve or protect the health of a particular group of people; supported primarily by voluntary contributions from the public at large rather than from government sources or endowments; engaged in programs of research, education and service to individuals and communities in their particular sphere of interest. 2 A question m i g h t well be raised as to whether there is a meaningf u l difference between the terms " v o l u n t a r y health organization," " v o l u n t a r y health agency," and " v o l u n t a r y health association." F o r the purpose of this report (and in disagreement with the lang u a g e of the N a t i o n a l H e a l t h C o u n c i l and of m a n y writers in the field) the term " o r g a n i z a t i o n " will be used as the generic one. W i t h i n the f r a m e w o r k of the voluntary health organizations this report sees as the distinguishing factor between the voluntary health agency and the voluntary health association the concept of the democratic process realized in day-to-day practice. In other words, the voluntary health association is a m e m b e r s h i p organization with the actual policy m a k i n g vested in a board of directors, d u l y elected by the m e m b e r s h i p and with the ultimate responsibility of authority resting directly w i t h the m e m b e r s h i p assembly or delegate body. ' N a t i o n a l Health Council. Voluntaryism and Health: Voluntary Health Agency (New York, 1962), p. ii.

The

Role

of the

National

Voluntary

Health

Organizations

24g

In contradistinction, in the voluntary health agency the membership plays a less immediate, less decisive role or may not have any real basis for sharing in the decision-making process, but participates in the affairs of the group through volunteering of services only. As in most organizational matters, distinctions can be drawn more clearly in theory than with regard to functioning organizations. Changes may occur but subtly in day-to-day practice, and only gradually be incorporated in the organization's constitution by the process of amendment. While it may be difficult to determine where on this continuum from association to agency a particular organization may stand at a particular time, the polarity is clearly evident. Furthermore, when it comes to the arranging of cooperative relationships between organizations, the procedural differences between an association and an agency in terms of participation of the membership in the decision-making process can be impeding or at least delaying factors. It is quite surprising in view of the attention that has been focused on voluntary health organizations how little consideration has been given to these internal processes, since they of necessity condition the organization's readiness and capacity for cooperative effort. Yet, there is much need to identify "the restrictions in agency procedure that prevent or interfere with interagency planning." 3 With the rapid growth of public services in the field of health and welfare and the massive research programs carried by the National Institutes of Health and some of the other federal agencies, the relationship between public and voluntary organizations poses ever new vexing problems. Much progress has been made here and interesting new approaches have been developed 4—indeed, at times it appears that it is easier to establish a fruitful working relationship between a public and a voluntary organization 'Oscar Kurren, "Inter-Agency Joint Planning and Collaboration, Fact and Fiction," Exceptional Children, November, 1962, p. 144. ' A most significant example of this is the National Committee for Research in Neurological Disorders.

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than to bring together effectively two or more voluntary organizations. Still, within the framework of this paper it is not possible to cover this topic. However, since there is constant reiteration of the belief that the voluntary health organizations, no matter how overshadowed quantitatively by the staff and financial resources of the public agencies, fulfill an indispensable, complementary role in the health field, a study in depth of these publicvoluntary relationships is urgently needed. In thus limiting itself to the field of the voluntary health organizations, it is the purpose of this paper to point to certain generic problems which underlie situations, where instead of desired cooperation (if indeed it is desired), there is frustration and conflict. It is well recognized that a schematic presentation of problem areas such as is attempted here will need to be more sharply drawn than corresponding situations encountered in day-to-day practice, and may tend to accentuate the negative and to overshadow the fact that actually a great deal of cooperative planning and working together does take place among voluntary health organizations. T h e many specific instances of such cooperation listed in subsequent sections of this report will bear testimony to that, but they also will show at the same time that too often cooperation is a matter of happenstance or fortuituous interpersonal contacts, rather than one of continuous policy and tested procedures. Structure, Purpose, and Function of Voluntary Health Organizations Voluntary health organizations have in recent years been the subject of much discussion and not infrequently of controversy. These discussions have suffered from the fact that broad generalizations were made overlooking the fact that the voluntary health organizations present striking differences in their origin, structure, purpose, and function. Only when these differences are clearly perceived and allowance made for them is it possible to come to a useful appraisal of any particular aspect of what can loosely be referred to as the voluntary health organization movement. In terms of origin, it is important to recognize that the older

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251

organizations stemmed from a period when broad concern with problems of health was characteristic of a relatively small sophisticated leadership group in the community or the nation, many of them closely related to the professional group concerned with the particular problem and at times deriving part of their initiative from that professional group. In contrast, some of the more recent organizations originated on a grass-roots basis with much of the initiative coming from persons not previously identified as belonging to a leadership group and at times proceeding in direct opposition to the professional group. As organizations moved on, these distinctions tended to be less pronounced and in any case less visible. Still, they may come suddenly to the fore and have an impact on matters under consideration or, more specifically, may complicate interorganizational relationships in areas where cooperative action is desired. In terms of structure, the most basic difference exists between two types of organizations. One type was created on the national level with subsequent organization by the national body of local, state, or regional subunits. This has been referred to as the "corporate type" structure. 5 T h e other type evolved from originally fully autonomous units (whether on a local, state, or regional basis) which came together for the purpose of organizing on their own terms a national body. T h e term "federation type" · has been suggested for this second type of organization. There is, however, a real question about the adequacy of this terminology, since the word "federation" implies a somewhat loose organizational tie with and among the component units, whereas the actual structure created by the initiating units may have been a strong membership organization with considerable control vested in an elected central body. There are in the United States examples of both of these two prototypes of federation structure, and they do, of course, differ substantially in the management of the ongoing relationship with their constituent units. They also differ correspondingly in their 'David L. Sills, The Volunteers: Means and Ends (Glencoe, 111.: T h e Free Press, 1957), p. j . • Ibid.

in a National

Organization

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ability to enter into meaningful relationships with other national organizations. Actually, the development of a specific national health organization may not correspond exactly to either the corporate type or the federation type structure. An organization originating on the grass-roots basis may, at a later state of its development, begin to organize new chapters through its headquarters staff exercising strong control in the process. In such a situation, the older "founding" chapters may still claim special prerogatives of autonomy but the character of the association may slowly undergo a basic change. Thus it is important to identify and proceed on the basis of an organization's present orientation rather than to view it retrospectively. Voluntary health organizations differ markedly in purpose. T h e y may have been organized broadly, or in any case consider themselves presently committed to a rather broad approach, such as serving all handicapped children, or they may be very specifically dealing with only one particular area of a specific disability. Obviously, when two such organizations come together for joint consideration of a proposal, the approach of the broadly organized "generic" group will differ from the other which is focusing rather sharply on a specific area. T h e n again, certain organizations may find it expedient to change or broaden their focus or move into problem areas where an existing organization is already at work. T h e resulting complications, as far as consideration of cooperative action is concerned, are obvious.

Cooperative relationships may be complicated by differences in functional approach on the part of organizations. One organization which emphasizes its "nonpolitical" character may find it difficult to work with another that sets out to be a social action group. One may emphasize research as the most promising avenue; another may believe that research must take second place as against the immediate need to create operating services. One group may concentrate on broad nationally based programs; another focuses on development of local programs.

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Another significant difference in the functioning of voluntary health organizations affecting their preparedness and ability to work with others lies in the extent of control yielded to or assumed by medical personnel. Is action taken primarily by the medical staff or board, with the general membership merely in a supporting role, or is the association's elected board of directors the action group, with counsel and guidance coming from the medical advisers? This obviously would make a difference when it comes to cooperative projects with other health organizations. None of the factors developed in this section need to be serious roadblocks preventing cooperative planning and action among voluntary health organizations. Once these differences are recognized and understood, allowance can be made for them and proper communication be established. In the 1930s, when there was evidence of a rather sharp conflict between the psychiatric profession and workers in the field of religion, Dr. Richard L. Jenkins suggested that much unnecessary friction and frustration could be avoided if only the psychiatrist, talking with the religionist, would begin with the concept of sin and move on to the concept of guilt, whereas the religionist approaching the psychiatrist would, of course, pursue the opposite course. Observance of this strategy would be most appropriate when health organizations, differing sharply in structure, purpose, or function, seek to enter into discussions about a joint course of action. Moves Toward Cooperation It is exactly fifty years since the first clear-cut effort was made to move toward some plan for cooperation and coordination among national health agencies. Dr. Frederick R. Green, Secretary of the Council on Health and Public Instruction of the American Medical Association, called together in April of 1913 representatives from thirty-nine organizations active in the health field to explore how the national health activities of voluntary organizations might be more effectively coordinated. Dr. Green apparently took little heart from that meeting because in 1915, in an article

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in the American Journal of Public Health,7 he enumerated his grievances regarding the voluntary health organizations in a bill of particulars that looks remarkably like one of the many recent attacks on the "proliferation" in the voluntary health field. W h e n , thirty years later, Selskar M. G u n n and Philip S. Piatt undertook the first broad study of voluntary health agencies, they were still concerned about the need for effective cooperation but approached this problem on a much more positive basis. T h e y correctly pointed out that at the very heart of the voluntary health movement was the concept of cooperation. " A voluntary health agency is the kind of project that depends for success upon the ability of individuals to cooperate." 8 T h e organizational structure, the board-staff relationships, the participation by volunteers in programs, the relationship among national, state, and local chapters all depend, of course, on a vital and often intricate and interwoven system of cooperative relationships. W h a t G u n n and Piatt correctly observed was that the very organizations which were developing such exciting new patterns of cooperation within the realms of their own membership often lacked recognition that the same approach should govern their relationships to other agencies and organizations and to the public at large. In a more recent appraisal of " T h e R o l e of Voluntary Agencies in Meeting the Health Needs of Americans," R o b e r t H a m l i n states: T h e growing complexity of community health and welfare programs, the rapid multiplication of voluntary agencies and the phenomenal increases in public giving all require much greater cooperative action by voluntary agencies, among themselves and with expanding government agencies, and in general community-wide planning for health and welfare services.® 'Selskar M. Gunn and Philip S. Piatt, Voluntary Health Agencies: An tive Study (New York: T h e Ronald Press Company, 1945), p. 18s.

Interprt-

'Ibid., p. 89.

• Robert H. Hamlin. " T h e Role of Voluntary Agencies in Meeting the Health Needs of Americans," in Meeting Health Needs by Social Action, Annals of the American Academy of Political and Social Science, Vol. 337 (September, ig6i), p. 101.

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In her excellent study Voluntary Societies and Social Policy, Madeline Roof, 10 on the other hand, reports from England very positive observations on the extent of cooperation among English voluntary organizations in the field of maternal and child health. A review of reports and policy statements of national health organizations indicates that they have a definite awareness of the need for consulting and joining forces with other organizations, and many of them carry lists of other health organizations with which they are working cooperatively. Usually one finds unilateral declarations of intent, promulgated by one organization and constituting essentially a self-directive. However, in 1962 two national voluntary health associations, the National Association for Mental Health and the National Association for Retarded Children, went distinctly further and entered into a more formal continuing cooperative relationship by issuing a jointly subscribed Memorandum of Understanding. It sets forth that as voluntary agencies conducting programs of research, education and service in the related fields of mental illness and mental retardation, respectively, NAMH and NARC recognize: —that their interests can be advanced by a better mutual understanding of the problems they face, and the activities they undertake, at national, state and local levels; and —that there are certain specific areas of common concern in which it is desirable to establish formal relationships. T h e statement proceeds to outline four specific ways in which this cooperative relationship will be implemented. Copies of the Memorandum of Understanding, on a specially prepared joint letterhead, were distributed to all member units of both associations. T h e American Heart Association is one of the organizations with a policy statement on the desirability of working cooperatively with both voluntary and official health and welfare groups. When in 1961 the Association arranged for an independent appraisal by a citizens' committee of its continuing obligations as a voluntary M Madeline Roof, Voluntary Societies and Social Policy (London: Routlcdge Ic Regan Paul, 1957), p. 64.

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health organization, this committee, in acknowledging past implementation of that policy, commented as follows: Generally speaking, we would like to see the Association's executives move toward closer and continuing relationships with their counterparts in other voluntary health agencies. Certain major needs, like effective relationships with government, or rapid rebuttal to uninformed, misguided, or deliberately hostile critics, make us believe that the development of personal friendships and increases in official contacts will be fruitful in strengthening the whole voluntary health agency field.11 T h e r e is no d o u b t that this advice could be appropriately extended to most if not all voluntary health organizations; even with the best of intentions it is hardly possible for an organization to exhaust all possibilities for cooperative action. It is important, however, to stress here that a considerable part of the present pressure on the voluntary health organizations is by n o means directed only at the development of better cooperative relationships; rather it questions their right to exist in their present form. W i t h increasing frequency the charge is being made that the field of voluntary health organizations is characterized by both wasteful duplication and omissions, and that steps must be taken to cut down the n u m b e r of individual groups. Frequently, quite unrealistic and misleading information is given as to the extent of overlap of activities. 1 2 T h e point here to be made is that there is altogether too m u c h fear of overlapping. As a matter of fact, a few years ago a British Medical Officer presented an address on " T h e Need for O v e r l a p p i n g , " '* and the National Health Council's brochure, Voluntaryism and Health, speaks out in similar vein: Overlapping of interest and diversity of approach have yielded great benefits to mankind in many areas of endeavor. Competition itself is an excellent antidote for complacency. All can be desirable if it means that different groups are working constructively on needed programs even though they involve the same or closely related problems. 14 u American Heart Association, The Heart Future: The Continuing Obligations of a Voluntary Health Agency (New York: 1961), p. 65. " S e e , for instance, Hamlin, " T h e Role of Voluntary Agencies," Chapters II, III, IV. " R . H. Parry, " T h e Need for Overlapping," The Lancet, March 19, 1955. " National Health Council, Voluntaryism and Health, p. 19.

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Other leaders in the health and welfare field stress that more is involved here than merely an assessment as to whether overlapping is to be seen as a positive or a negative factor. T h e y insist that it is as important to preserve diversity as to foster unity in diversity, 15 relating the need for safeguarding the integrity of the separate voluntary health organizations to the need for preserving the individual citizen's integrity in community actions. 1 · In any case, the controversy over duplication and the resistance to inappropriate urging of organizational mergers should never be allowed to stand in the way or retard the development of helpful cooperative relationships among organizations. As the Gunn and Piatt report puts it so well: Cooperation is coming to be the "hallmark." of a good voluntary agency. These cooperative relationships with other voluntary and official agencies and community groups rarely remain static. They have to be cultivated. Much can be done cooperatively that cannot be done independently.17 The

Role

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A11 early answer to the quest for more cooperation among the voluntary health agencies was given in 1920 with the formation of the National Health Council. As it is organized today, the Council provides the broadest and most clearly defined basis for cooperative action among the health organizations. Far from threatening the independence of the individual health organizations, the Council strengthens and enhances their integrity; instead of surrendering individuality, each participating agency gains in stature and indeed gains greater strength to pursue its own program. 18 Quite obviously, the strength and effectiveness of the Council depend on the degree to which its member agencies have come to accept this. Still, the National Health Council does by no means provide the " R o b e r t Bondy, "Some Issues before Voluntary Social Welfare" (New York: National Social Welfare Assembly, 1962; mimeographed). " Basil O'Connor, " T h e National Voluntary Health Organization—Its Place in American Life," Journal of Rehabilitation (July-August, 1959), p. 6. " Gunn and Piatt, Voluntary Health Agencies, p. 330. "Charles W. Merrifield, " T h e Role of the Voluntary Organization in a Changing World," in 1959 Convention Proceedings, National Association for Retarded Children.

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complete answer in terms of needed cooperation among health organizations. It must be selective in the projects it undertakes so that each meets the needs of at least a substantial number of its constituents. T h i s does not necessarily mean that participation in any project cannot be limited to just a few of the organizations, as long as the result of the program will be of significance to others. Indeed, the development of special committees and subgroups for the pursuit of subject matter of immediate concern to some of the affiliates does enhance the Council's effectiveness, as long as these efforts keep some balance over the whole range of interests represented in the Council. T h e Council must also be selective in terms of its limited fiscal and staff resources as to the number of projects it can undertake at any one time. T h e Council is able to undertake certain projects that are beyond the reach of individual agencies, such as the Health Forum in connection with its annual delegate assembly, or more recently the project to establish Uniform Accounting and Financial Reporting Procedures for Voluntary Health Agencies. W h i l e technically the well-known Health Careers program now in its sixth year might have been undertaken by one or more of the individual voluntary health organizations, acting in concert and with the help of foundation funds, the very essence of this project lies in its being as broad-gauged as possible, which is assured through the sponsorship of the Council. Finally, as important as all the foregoing activities is another function of the Health Council. It helps to create the setting in which individual health organizations can effectively join together in a cooperative endeavor. It does so, on the one hand, by such specific steps as acting as a clearinghouse on the programs and activities of health organizations and by providing the medium through which the volunteer leadership and the executives of these organizations come together and know each other, and on the other hand by creating a favorable climate in the community and the nation for the total cause of voluntary health organizations through acting as their spokesman. Conversely, the Health Council must beware not to take over

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functions that appropriately belong to an individual health organization. 19 T h e Council is not a policing agency. W h i l e it should be concerned with seemingly unnecessary duplication of function or services between or among associations, it cannot and should not be in a position to issue directives; consultation and confrontation in conferences are its tools. O n the other hand, the Council must stand ready to encourage new associations which develop in response to changing conditions and new challenges, and help them to establish their proper place in the network of voluntary organizations. A good example of appropriate Council activities in the area under discussion here is the National Health Council's effort to provide a base as well as a basis for discussion among the four existing major epilepsy groups in the United States, in the hope that a means for coordination of their respective efforts might be found. In summary, while the existence of a well-functioning National Health Council is of greatest importance, it does not obviate a constant emphasis on the need to develop cooperation in planning and servicing as between individual voluntary health organizations. A t the same time, there is much to be said for Robert Hamlin's observation that the National Health Council operates considerably below its potential and is capable of much greater accomplishment notwithstanding the independence and autonomy of its member agencies. 20 T h i s is a deficiency which its own affiliates can well remedy by more active participation and more adequate support. Problem. Areas in the Interrelationships of Voluntary Health Organizations "Voluntary organizations, being potentially as responsive to novelty and change as any other institutions of the free society, U W . B. Baker, "Observations on Voluntary G r o u p Approaches to Creating Community Understanding and Responsibility (a paper presented at the 5th Annual Conference of the Canadian Association for Retarded Children, Halifax, 196«), p. 6. " R o b e r t H. Hamlin, Voluntary Health and Welfare Agencies in the United States (New York: T h e Schoolmasters' Press, 1961), p. »9.

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therefore, carry a special kind of responsibility. It is to be institutionally flexible; to be sensitive and knowing; to be experimentally oriented—so as to anticipate adjustments in the social process which they serve through voluntary enterprise." 21 T h u s Charles W . Merrifield points to one of the major stumbling blocks in the development and maintenance of cooperative relationships. T h e National Health Council puts it more bluntly: "Attachment to time honored ways of doing things should never be allowed to long resist needed changes." 22 Yet, just as the Daughters of the American Revolution have come to abhor anything that smacks of change, let alone has the faintest revolutionary traces, so old-line, well-established "reform" agencies appear to be quite sure that they can handle the job that is to be done and see no need for "young upstarts" which come with new problems, new goals, and new approaches leading to new solutions. Also, a sense of status and power may bring a large, longestablished organization to surround itself with rather arbitrary policies and procedures which put other associations interested in establishing contact in the role of petitioners. 23 Such a situation does not encourage the mutuality in cooperative relationships highlighted by a seminar of national organization representatives in this fashion: T o what extent does an organization have a responsibility to work with other organizations to achieve what it cannot do alone? Cooperation as such has no value. It must be cooperation for something. T o what extent can an organization give to another organization and what can it get from that organization? 24 It is a sad testimonial of the superficiality of our dollar psychology that the organization with a small budget is by that token considered as less significant than one with distinctly greater fi" Charles W. Merrifield, ed.. Leadership in Voluntary Enterprise (New York: Oceana Publications, 1961), p. 14g. " National Health Council, Voluntaryism and Health, p. *o. " G u n n and Piatt, Voluntary Health Agencies, p. 253. " Council of National Organizations of the Adult Education Associations, The Leadership of National Organizations on the US. Scene (New York, 1959), p. 30.

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nancial resources.*8 Yet, in certain respects such a small group with a new, very specific focus may indeed have much to offer to the older and larger organization with a more generalized program. It is encouraging that the American Medical Association in its suggested "Guides to Relationships between Medical Societies and Voluntary Health Agencies" M emphasizes the worth of the smaller, more recently developed associations, but such an insight is not reflected in the day-to-day practices of the larger organizations. Altogether there is good reason to underline the National Health Council's admonition that national health organizations must show "a willingness to keep the 'cause' itself and not the 'agency' as the center of attention." 27 Another problem area which forms a roadblock, hindering development of effective cooperative relationships among national health organizations, relates to the method of operation of professional staff. Unless this problem is recognized and special effort is made to circumvent it, professional staff members tend to communicate with their professional colleagues in other organizations but are less apt to establish contacts with voluntary associations working in related fields which do not have professional counterparts. A related problem exists among the organizations which do employ professional staff, because even though communication is maintained between the executives (and between other professional staff) who meet each other at conventions and conferences or by visiting each other's offices, there is much less likelihood for the presidents and other volunteer leaders to meet unless special efforts are made in that direction. Obviously most of the foregoing factors inhibiting effective and continuous cooperative relationships are of a nature that they could very easily be overcome. But there will remain another qualitative factor, brought out • Richard Carter, The Gentle Legions (New York: Doubleday and Company, 1961), p. ti5" American Medical Anodation, Handbook for Medical Societies and Individual Physicians on National Voluntary Health Agencies (Chicago, 1960), p. 85. "National Health Council, Voluntaryism and Health, p. to.

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by Joseph L. Vigilante when he observed in a recent study of national organizations that "there is less evidence of cooperative effort at the point of action . . . than is evident in the development of social policy. T h e organizations studied apparently consult each other extensively in developing policy but are reluctant to unite forces in policy implementation." 2 8 Perhaps one might go so far as to suggest that some of our elaborate planning conferences are set up by design so as to circumvent or at least delay direct straightforward cooperative action. Here, as in other areas of interpersonal and intergroup relationships, one needs to take account of such psychological factors as fear of loss of sovereignty, fear of sharing information, lack of trust, lack of genuine conviction about the desirability of cooperative planning, and last but not least the tendency toward empire building and possessiven ess on the part of both board and staff. Areas and Patterns of Cooperation T o give an adequate accounting of areas and patterns of cooperative relationships among national health organizations is not easily accomplished because aside from a limited number of major projects most of this occurs through informal agreement. Even where the record shows cooperative action, the method by which this was achieved is usually not stated. T h e most obvious but unfortunately one of the most neglected areas where an understanding should be sought between two or more organizations working in related fields is that of coverage, both in terms of content and in terms of geography. An example of this is an agreement arrived at several years ago by the National Association for Mental Health and the National Association for Retarded Children that NAMH, its broad general concern in the field of mental health notwithstanding, would not seek to become involved in mental retardation activities in regions and localities where N A R C had an active group, unless of course it was by joint action. Another example of definite understanding as to spheres of " J o s e p h L. Vigilante, Study of Social Policy and Social Action Activities of Selected National Social Welfare Organizations (National Social Welfare Assembly.

i960)·

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service exists between the American Foundation for the Blind and the National Society for the Prevention of Blindness. Unfortunately even in the most recent years there have been instances where a national health organization suddenly announced extension of its activities into areas where another organization was already active, without either prior or subsequent consultation. A notable effort to remedy a situation where several organizations claim national coverage in the same field is the previously mentioned effort of the National Health Council in working with four groups concerned with the field of epilepsy. As the federal government, often at the initiative of congressional leaders, has assumed an ever increasing active role in developing health research and health resources, voluntary health organizations have found it to their advantage to cooperate at least to the extent of conferring about their respective legislative planning. 29 More and more this has led to agreement on certain areas of joint action, as in the case of some of the National Institutes of Health whose functions overlap those of several health organizations. A corollary to joint legislative action is joint activity in dealing with federal agencies, at times stimulated by the intiative of federal officals who have called together organizational representatives to discuss matters of policy. Still there is room for considerable expansion. While some of the organizations have cooperated well on the Washington scene, others have preferred to "go it alone" as a matter of principle. In the area of research, the most notable joint activity was the Arden House Conference on Neurological Disability as a National Problem convened in 1947 under the auspices of the National Health Council. It highlighted for the first time the vast impact of neurological disability and its many manifestations, which had previously been seen by the public only piecemeal " A n example of this is the Interagency Committee of the Council for Exceptional Children, ΝΕΑ providing a helpful meeting ground between organizations in the fields of special education and health.

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through the separate disease categories represented by the individual organizations. This broad emphasis continues to be pursued through the activities of the National Committee on Research in Neurological Disorders, representing more than a dozen national organizations. While this Committee represents the broadest based ongoing example of cooperative effort, there are many other instances where two or more organizations are collaborating in planning and implementing research. An example of cooperative action in the development of patterns for a new service is found in the area of homemaker and home-aid service where two national coordinating bodies, the National Health Council and the National Social Welfare Assembly, cooperated in bringing together health and welfare agencies to find suitable patterns and auspices for such services. Another area in which there has been much fruitful cooperation is that of developing uniform standards and uniform procedures. Examples are the Uniform Accounting Project; efforts to achieve uniformity in statistical reporting; and most recently the development of the American Standards Specifications for making buildings and facilities accessible to and usable by the physically handicapped, a project in which the National Society for Crippled Children and Adults took the leadership. A potentially very fruitful field for cooperative action which warrants far greater emphasis than it has received so far is that of informational exchange between agencies. Greater knowledge of cach other's activities is a n indispensable prerequisite to an in-

crease in cooperative activities. T h e old habit of "holding one's cards close to one's chest," appropriate as it may be in a card game, surely has no place with voluntary organizations which receive their funds from the public and hence administer a public trust. Related to information sharing is the area of fact finding. Here national organizations have shown far less interest in joint activity than their subsidiaries on the local and state level, which as a rule cooperate freely in an assessment of standards, practices, and serv-

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ice needs. There is reason to conclude that a feeling of sovereignty is far more strongly developed on the national level and thus interferes with free inquiry. Parenthetically, one might observe here that while cooperation and coordination at the national level are at times complicated by the various patterns that exist locally and at the state level, there is on the other hand at times a greater amount of cooperation locally. This can have a healthy effect at the national level, at least in organizations that are responsive to what their grass roots are doing. Certainly, national organizations should assume a leadership role and encourage their local and state groups to experiment in cooperative activity. The picture looks more favorable when it comes to staff recruiting and staff training. Most outstanding, and again spearheaded by the National Health Council, is the Health Careers Project. Here the voluntary health organizations are not just cooperating in planning but have made substantial financial contributions to the project. Joint sponsorship of special training programs, institutes, and seminars to train existing staffs is becoming more frequent. Many health organizations also participate in the regional field staff program of the National Social Welfare Assembly, which serves the purpose of both informational exchange and staff development in a service area of particular significance to national organizations. Similarly, a number of health organizations have cooperated in programs of the Council of National Organizations on Adult Education, designed to strengthen existing procedures and explore new approaches to the recruitment and development of volunteers. T h e last area of cooperative effort to be listed here is that of fund raising, which has been the most controversial and the one where the national health organizations have been most consistently attacked as a group. Joint effort has concentrated on two areas. The first is focused on assistance in the evolvement of standards of fund-raising practice, largely through a project sponsored by the National Social Welfare Assembly. T h e second effort in-

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volved cooperative action in reaffirming the right of the individual giver to select his charity, together with the right of the individual organization to seek out the individual giver in the community, as against the campaigns for what is no longer federated but rather centrally controlled fund raising. How much this controversy goes to the very essence of voluntary organizations is well stated by Samuel Mencher in his article on " T h e Future of Voluntaryism in American Social W e l f a r e " : T h e ultimate implications of the united fund are the negation of the values of voluntaryism. More active participation than giving and collecting donations is discouraged both by the complex and impersonal nature of the structure and by the syphoning off of voluntary energies into these functions. T h e approved roles for voluntary participation, as defined by the fund and its member agencies, are almost entirely enveloped in fund raising. Vicarious participation has become the goal where once "buying one's way" in lieu of performing actual deeds was viewed somewhat dubiously. 30 T u r n i n g now to the patterns of cooperation among voluntary health organizations, we find that the material in this report has already highlighted so clearly the prominent role played by the National Health Council as the coordinating body that further elaboration would not appear necessary. Bilateral interagency agreements of a formal nature appear to be relatively rare, particularly with as broad a scope as the one between the National Association for Mental Health and the National Association for Retarded Children, referred to earlier. Interagency committees, on the other hand, are used very frequently, initiated either at the call of one organization which remains the convener, or else brought together by joint action of several organizations. Some of the organizations make it a practice to invite other organizations to appoint a representative to participate in an agency c o m m i t t e e — a very effective way of establishing a regular channel of communication. A review of annual reports and other statements of voluntary K Samuel Mencher, " T h e Future for Voluntaryism in American Social Welfare," in Alfred J. Kahn, ed., Issues in American Social Work (New York: Columbia University Press, 1959), p. 229.

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health organizations reveals a wide variety of interagency projects, such as jointly sponsored institutes, jointly arranged sessions at national conventions, joint publications, joint studies, and joint news releases. T h e r e should be mentioned here also the simplest beginning of cooperative enterprise—the exchange of news bulletins and other published materials, the exchange of exhibit space at conventions, and other means to make known organizational activities to a sister organization. T h i s brief overview of areas and patterns of cooperation indicates how wide a field lies open for fruitful interplay between voluntary health organizations, but it also points up how much more can and needs to be done if the nation is to get full measure for one of its most priceless resources—the voluntary effort in the health field. What would happen if this corps of volunteers who labor without pay, who exercise their own free will in choosing the functions they will perform, were to resign their posts, refuse to attend meetings, disengage themselves from all responsibilities? It is difficult to imagine what American life minus its volunteers would be like, but one may make a few assumptions. Officials and professionals would, no doubt, continue to operate their respective institutions and agencies, at least for a time, but they would function in a lonely atmosphere. They would find themselves insulated from the true public and in touch with only that sector of the public which is represented by their constituents and clients. There would no longer be a life-line between their expertness and the experience of the people. T h e transmission belt which shuttles back and forth between Democracy on the one hand and Science on the other would stand idle. They, the professionals, would soon be obliged to devote large amounts of time and energy in securing funds for the maintenance of their work and assurance for their incomes. Public agencies would take on more and more of the coloration of bureaucracies. Private agencies would, I believe, gradually wither and die. And when private institutions no longer exist Democracy will have committed suicide. Totalitarian bureaucracies or dictatorships will take its place and freedom will disappear altogether. I wish I knew how to induce volunteers to appreciate the significant role they play in furnishing vitality to the democratic enterprise. They

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are to Democracy what circulation of the blood is to the organism. They keep Democracy alive. They epitomize freedom and are to our society what the Bill of Rights is to the Constitution which governs us. T h e health of a democratic society may be measured in terms of the quality of services rendered by citizens who act in obedience to the unenforceable. 81

BIBLIOGRAPHY

Continuing American Heart Association. The Heart Future: The Obligations of a Voluntary Health Agency. Report of the Committee on Future Role. New York, 1961. American Medical Association. Handbook for Medical Societies and Individual Physicians on National Voluntary Health Agencies. Chicago, i960. Baker, W. B. "Observations on Voluntary Group Approaches to Creating Community Understanding and Responsibility." A paper presented at the 5th Annual Conference of the Canadian Association for Retarded Children, Halifax, 1962. Bondy, Robert. "Some Issues before Voluntary Social Welfare." New York: National Social Welfare Assembly, 1962. (Mimeographed.) Carter, Richard. The Gentle Legions. New York: Doubleday and Company, 1961. Commager, Henry Steele. Freedom, Loyalty, Dissent. New York: Oxford University Press, 1954. Council of National Organizations of the Adult Education Associations. The Leadership of National Organizations on the U.S. Scene. New York, 1959. Gunn, Selskar M., and Philip S. Piatt. Voluntary Health Agencies: An Interpretive Study. New York: T h e Ronald Press Company, 1945. Hamlin, Robert H. " T h e Role of Voluntary Agencies in Meeting the Health Needs of Americans," in Meeting Health Needs by Social Action. The Annals of the American Academy of Political and Social Science, Vol. 337, September, 1961. Voluntary Health and Welfare Agencies in the United States. New York: The Schoolmasters' Press, 1961. Kurren, Oscar. "Inter-Agency Joint Planning and Collaboration, Fact and Fiction," Exceptional Children, November, 1962. Lindeman, Eduard C. The Democratic Man: Selected Writings of 11 Eduard C. Lindeman, The Democratic Man: Selected Writings of Eduard Lindeman, edited by Robert Gessner (Boston: Beacon Press, 1956), p. 1 1 6 .

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Eduard C. Lindeman. Edited by Robert Gessner. Boston: Beacon Press, 1956. Mencher, Samuel. " T h e Future for Voluntaryism in American Social Welfare," in Issues in American Social Work. Edited by Alfred J . Kahn. New York: Columbia University Press, 1959. Merrifield, Charles W., ed. Leadership in Voluntary Enterprise. New York: Oceana Publications, 1961. " T h e Role of the Voluntary Organization in a Changing World," in 1959 Convention Proceedings, National Association for Retarded Children. National Committee for Research in Neurological Disorders. Exploring the Brain of Man. No date given. National Health Council (Arden House Conference). Ten Million and One. New York: Hoeber-Harper, 1957. National Health Council. Voluntaryism and Health: The Role of the National Voluntary Health Agency. New York, 1962. O'Connor, Basil. " T h e National Voluntary Health Organization— Its Place in American Life," Journal of Rehabilitation, July-August, 1959. Parry, R . H. " T h e Need for Overlapping," The Lancet, March 19, »955Raushenbush, Stephen. The Challenge to the Alliance for Progress. Washington, D.C.: Public Affairs Institute, 1962. Roof, Madeline. Voluntary Societies and Social Policy. London: Routledge & Kegan Paul, 1957. Sills, David L. The Volunteers: Means and Ends in a National Organization. Glencoe, 111.: T h e Free Press, 1957. Vigilante, Joseph L. Study of Social Policy and Social Action Activities of Selected National Social Welfare Organizations. National Social Welfare Assembly, i960.

21

The Role of Public and Voluntary Services in Prevention and Treatment Implications on Mental

of the Findings of the President's Panel Retardation for Programs and Services to Children and Youth

Presented at the meeting of the Citizen's Committee on the Children's Bureau's 50th Birthday, Washington, D.C., April 9, 1963 There is no doubt that the report of the President's Panel on Mental Retardation constitutes a major, if not the most important, "bench mark" in the history of mental retardation in this country and I dare say the world; but we cannot afford to contemplate, in leisurely adoration, this great achievement—five and one-half million retarded and their families are waiting for the benefits we can derive from the work of the President's Panel. T h e y challenge us into tangible action, and it is my task here to discuss some of the ways in which we must implement the Panel's recommendations and to point up some of the obstacles we will e n c o u n t e r i n t h e process.

In doing so, I shall refer not so much to the Panel report itself but rather to the products which bear testimony to the national administration's intention to give this matter highest priority so far as federal action is concerned, namely the decisive message which the President sent to Congress on February 5 on the subject of mental retardation and mental illness, and the various bills which have since been introduced into Congress at the behest of the administration to carry out specific steps set forth in the President's message.

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Faced with so comprehensive a program as is contained in the Panel's report and the President's message, it is difficult to single out any one point as more important than all the others. Yet the more I have conferred with officials of public and private agencies, and with the leaders of associations for retarded children across the country, the more I become convinced that the keystone for the development of an adequate action program is effective, coordinated planning on the state level. More specifically, I refer to the coordinated planning that must be done by the state agencies responsible for the various programs envisioned by the Panel and the President's report. In doing so, I by no means belittle the role that is now played and increasingly will have to be played by private agencies and by the more than 1,000 associations for retarded children that have come into existence during the past decade. Nor do I mean to imply that state programing will be more important than programing in the local community. There is indeed growing agreement that in the long run services to the mentally retarded must be planned and given in the local community whenever it is at all possible. T h e problem is how we will get to that point. T h e most formidable stumbling block rests in the past, which by and large identified services to the mentally retarded with institutional services and, with few exceptions, had these rendered by state agencies. T o be sure, in many states educational services were available for the mentally retarded, but they were provided only for the upper levels and even for those only on a sporadic basis. More important yet than the actual availability was the public's image of the situation: the retarded or defective child or adult belonged in an institution. T i m e does not permit me to elaborate on this in the present context, but I am sure many of you are aware of instances in the most recent past when state health departments have disclaimed any concern with the physical well being of the retarded because they consider retardation a mental health problem exclusively and thus fully the responsibility of the mental health authorities. Similarly, you know of education authorities who saw services to

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the retarded, instructional or otherwise, as outside the sphere of the educator, a task for the welfare authorities. T h e significant point is that in the past the mentally retarded, as soon as he was recognized as such, was a "displaced person," displaced from the community literally whenever possible, and figuratively otherwise—there were no services for him or his family, and no end to the rejection he suffered. It was "up to the state" to take care of him, and Albert Deutsch has left with us a vivid picture to what extent the state's role was seen as a custodial or police function. Of course there were some outstanding exceptions to this state of affairs but we are concerned here with broad national trends, trends which are still all too recognizable to the present day. (For instance, for those of you who feel that my reference to police function is an overstatement, let me raise the question how one would explain otherwise the fact that right now there are still numerous states which in allowing a parent to remove his child from a state institution for the retarded for a week's vacation specifically forbid the parent to spend part of this time with his child outside the state's borders. How else could one interpret such nonsensical restrictions upon a responsible citizen and taxpayer whose child is disabled but neither delinquent nor, in his parent's care, a danger to others or himself. And one could go on enumerating many other infringements of the civil rights of the retarded and his parents by the state agencies providing institutional care.) It stands to reason that in the presence of such rigidity a n d restrictiveness, m u c h of which is b y n o means the result of

administrative whim but is laid down by statutory mandate, great difficulties will be encountered as we try to move into the dynamic free exchange between community and institutional programs, between local and state services which the Panel report foresees. Certainly it will not be easy within our varying state structures, with their complicated, already none-too-well balanced tax base, to think concretely about local communities assuming responsibility for services to the retarded. Nor should we be too eager to suggest that systems of state services, as they have slowly grown

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and expanded by adding here an outpatient clinic, there a foster home service working out of the institution, and somewhere else precommitment counseling to the families involved, supplemented by some steps in the direction of vocational rehabilitation, be exchanged for what could become a general hodgepodge of some excellent hit and some horrible miss services on the community level. Must we not first concern ourselves with the complex problems of setting up state-wide standards and their enforcement; with supervisory and consultative services from the state to the local government administering these community services; with effective formulas for matching state and local funds; and last but not least with the appropriate choices among the state agencies for administering these functions in any one of the many new areas in which the President's program calls for the development of new services. Again let me say that I am well aware of the phenomenal progress that has been made in a few of our states during the past several years in widening out limited institutional services into the beginnings of needed community services. Still, we are concerned here wth the nationwide picture. Furthermore, even in those progressive states leadership has come usually from just one department, resulting in incomplete and often lopsided planning and programing. A special word needs to be said about public school services to the retarded. Here too we can and must acknowledge examples of outstanding progress, such as the establishment by some outstanding school systems of special classes on the secondary school level for youngsters who in many other states are still considered totally incapable of profiting from any type of elementary schooling. Nationwide statistics will show that during the past decade the number of pupils in special classes for the retarded has more than doubled. But particularly in our context these figures can be very misleading. We are concerned here with consideration of ways and means to implement the President's program on mental retardation across the country, and from that point of view the striking variations in this rate of progress are of crucial importance.

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T h e r e are states where special classes for retarded pupils have been initiated mainly by the larger cities, with but little activity elsewhere, whereas there are other states where the exact opposite is true—the smaller school systems have been responsive to the needs of the retarded while the larger cities hardly pay even lip service. Equally striking differences are reflected in the attitudes of the various state education departments toward educational services to the retarded. Obviously we cannot move into broad-scale, nationwide implementation of the President's program without full participation of the public schools, and with regard to them the delicate balance between home rule and state leadership constitutes a particular problem. All of this serves to underline why at this stage of development in our services to the retarded our attention must first be directed to a thoughtful consideration of broad strategies in state-wide planning. T h e provisions of the President's program with regard to this problem of state-wide planning and of effective coordination of services is expressed in House Bill 3386, introduced by Representative Mills and presently before the Ways and Means Committee, and in Senate Bill 1072, introduced by Mr. Ribicoff and now before the Committee on Finance. These bills, which are identical in text, propose in Section 5 that there be added to the Social Security Act a T i t l e X V I I , Grants for Planning Comprehensive Action to Combat Mental Retardation. T h e President's intent is clearly expressed in his message: The key to the development of this comprehensive new approach toward service for the mentally retarded is twofold. First, there must be public understanding and community planning to meet all problems. Second, there must be made available a continuum of services covering the entire range of needs. States and communities need to appraise their needs and resources, review current programs, and undertake preliminary actions leading to comprehensive State and community approaches to these objectives. T o stimulate public awareness and the development of comprehensive plans, I recommend legislation to establish a program of special project grants to the States for

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financing State reviews of needs and programs in the field of mental retardation. A total of $2 million is recommended for this purpose. Grants will be awarded on a selective basis to State agencies presenting acceptable proposals for this broad interdisciplinary planning activity. The purpose of these grants is to provide for every State an opportunity to begin to develop a comprehensive, integrated program to meet all the needs of the retarded. Simple and straightforward as is this purpose, reactions from a large number of states bear testimony to the fact that the complexities and variations of state government on the one hand and the broad, multifaceted nature of mental retardation on the other hand will make the implementation of these provisions, once enacted, a difficult and undoubtedly controversial task. Anyone who has studied broadly the problem of mental retardation realizes that it cannot be brought down to a simple, common, administrative denominator. T h e wish has been expressed from time to time that there should be created one state department responsible for all aspects of mental retardation. No such plan has ever come to the fore. It just is not possible to combine into one administrative entity effective consideration of "services in the fields of education, employment, rehabilitation, welfare, health, and the law," to quote the aforementioned bills. If these bills recognize so clearly the many and so varied aspects of mental retardation, where then lies the problem to which I have alluded? Here we come upon a most interesting complication, arising from new policies developed in recent years with regard to federal-state relationships. The purpose of these policies is clear: the federal government does not wish to dictate to states how they should administratively implement federal legislation dealing with grants-in-aid to such fields as health and welfare. In our case, however, this purpose collides with another policy of the federal government: that in the case of such grants-in-aid programs the state must designate a single state agency "as the sole agency for carrying out the purpose of this title," and indeed these exact words appear in both these bills in Section 17.03 of the

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proposed T i t l e X V I I . T h e r e just is not in any of the fifty states any one state agency suitable to carry out the broad mandate inherent in the above-quoted section of the President's message and subsequently included in these bills. Indeed, the trend in the states has been in recent years to separate out from large, omnibus departments discreet entities and establish them as separate, functional state departments. T h e r e have been a few exceptions to this, but the trend is clear and has led to the fact that anyone concerned with planning services for the mentally retarded must deal with as many as six to eight, and in some states even more, separate departments. T h i s is not a new problem. It was clearly recognized by the Council of State Governments in 1958 when a Conference on Mental Retardation went on record as follows: 1 1. The conference, therefore, recommended that each State establish an interdepartmental agency, such as an interdepartmental committee, council or board for the joint planning and coordination of state services for the mentally retarded. This interdepartmental agency may be established by the Governor or the legislature, depending upon conditions prevailing in the state. 2. Such departments as education, mental health, health, welfare, labor, corrections, and institutions of higher education offer programs and services for the mentally retarded. Within a given State there may be other departments concerned with the mentally retarded. Within each of these departments there should be a division or bureau for services to the mentally retarded or a special consultant with specific responsibility for the development and administration of these services. A few of the states have already established interdepartmental committees in the area of mental retardation which have functioned successfully over the past several years. T h e question has been raised, however, whether an interdepartmental committee appointed by the governor through executive action does constitute a "state agency" as prescribed by Section 17.03 in the proposed T i t l e X V I I . Furthermore, some of these committees, even if eligible, would not appear to be prepared administratively to administer a federal planning grant. 1 Report and Recommendations of the Conference cago: Council of State Governments, 1958).

on Mental

Retardation

(Chi-

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It is worth noting that one state, North Dakota, enacted in March of 1963 a law creating a state coordinating committee on mental retardation. This new statute prescribes that the committee "shall have the duty and responsibility of making or providing for such studies and surveys of the needs of retarded persons in North Dakota as it may deem necessary, and shall coordinate the activities of all state departments, divisions, agencies, and institutions having responsibilities in the field of mental retardation." Thus, North Dakota is the first state that has responded to the President's message by a legislative enactment facilitating the proposed mental retardation planning grants. Not all states may have an opportunity or the desire to pass such special legislation. The question then arises what pattern of procedure can be developed to reconcile what would appear to be two contradictory provisions of the aforementioned Section 17.03: the first one requires "a single state agency as the sole agency for carrying out the purposes of this Title"; the second that "provision will be made to assure full consideration of all aspects of services essential to planning for comprehensive State and community action to combat mental retardation, including services in the fields of education, employment, rehabilitation, welfare, health, and the law." There is certainly a very distinct difference between the functioning of an interdepartmental or interagency committee convened by the governor (or mandated by the legislature) on which all departments are represented, on the one hand, and on the other hand a situation in which one department makes the study, merely giving other departments a chance to voice their comments and recommendations. The emphasis that has been placed in the foregoing comments on effective coordination of the state agencies should not convey the impression that there is no need to involve public agencies on the local level and private associations and citizen groups. With regard to the former, the question arises from where such representation would come, from the county or from the municipality, and what safeguards will be prescribed in terms of number of

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representatives, voting rights, etc., to "assure full consideration" to these local interests. Similar questions need to be raised with regard to voluntary services (such as privately sponsored sheltered workshops, hospitals and hospital clinics, residential facilities, day care centers, etc.). It is interesting that none of the pending legislation specifically names voluntary associations as participants in this planning activity. This is all the more surprising since two of the bills introduced at the request of the administration in furtherance of the President's Mental Retardation Program, and dealing with construction of mental retardation facilities, specifically prescribe a State Advisory Council (for the purpose of that particular program). The program sets forth that such an advisory council should include "representatives of consumers of the services provided by such facilities." Still, it would seem obvious that in the field of mental retardation one could hardly have "full consideration of all aspects of services essential to planning for comprehensive State and community action to combat mental retardation" without adequate representation from the state and local Associations for Retarded Children. It is not mere coincidence that in many states the effort to establish Interdepartmental Committees on Mental Retardation has been spearheaded by the state Association for Retarded Children. I have stressed here the importance of an interdepartmental or interagency committee on the state level. Membership, specifically voting membership on such a body, must be reserved to especially

delegated officials of these state departments. Some states, such as New York, provide a guest or consultant status for invited representatives of nongovernmental groups, and the recent enactment in North Dakota specifically gives this privilege to the North Dakota Association for Retarded Children. In any case, it should be obvious that an interdepartmental committee as such cannot by and of itself carry out the program of state-wide planning proposed in the new mental retardation legislation.

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Certainly a long tradition in this country has taught us the value of citizen action—the impetus which comes from a variety of civic and professional groups banding together for planning in areas of major concern, whether as a subgroup of an over-all planning body or as a separately organized council on such a subject as mental retardation. Once there is established a soundly functioning interdepartmental committee (and I have pointed up earlier the reasons why in the specific area of mental retardation I consider this a numberone priority), steps must be taken to bring together that committee and the citizen planning body plus—and here comes the third dimension—appropriate representation from local governments. I am fully aware of the impatience most people have with what appears to be a multiplicity of committees, but I also belong to that old-fashioned group of people who feel that short cuts across that cornerstone of our democracy—the separation of powers of the executive, judiciary, and legislature—have never benefited us in the long run. I consider as equally important the need to differentiate within our context between the functioning of an interdepartmental committee as an arm of the executive branch of government (and thus responsible to the governor) on the one hand, and the independent citizen planning and action body on the other, with its privilege to range freely, unhampered by the bureau of the budget. There is no question that a discussion of the Panel's concepts of a "continuum of services" and of a "fixed point of referral" in each community might have led us into a most stimulating discussion, one that would have reflected more adequately the richness of the content of the Panel's report and its many specific recommendations. Certainly these recommendations cover the very subject areas to which governmental agencies and interested citizen groups in the various states must address themselves. Still, I realize that these specific recommendations are already well known to you and well publicized in the professional and popular journals. Insufficient attention, on the other hand, has

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been given, it seems to me, to the basic problems of planning and organization of services on the state level. Without clear recognition of the practical implications of this problem on the desirable development of community services for the mentally retarded, we shall not realize fully in our states the total benefit of the splendid work of the President's Panel on Mental Retardation.

APPENDIX

Mobilizing for Action Around the World BY

ROSEMARY

F.

DYBWAD

Adapted from a paper presented at the Annual Convention of the Council for Exceptional Children, Philadelphia, April, 1963 T h e work of the President's Panel on Mental Retardation has highlighted the role of the National Association for Retarded Children, founded in 1950, in pioneering a new understanding in the field of mental retardation. What is not sufficiently known is that in other countries, voluntary parent-sponsored associations were being organized at the same time and with the same goals. Before 1950, local groups were in existence in England, France, and New Zealand; by 1953, when ΝARC's first Secretary offered to act as an informal clearinghouse for the exchange of information and experiences, she was in touch with associations in Australia, Canada, Denmark, England, France, Israel, Japan, the Netherlands, New Zealand, Norway, and South Africa, and with individual parents or professional workers in Germany, India, Ireland, Mexico, Scotland, and the West Indies. One might well speculate about the driving force behind this spontaneous movement which occurred in widely separated countries with widely different cultures. It took root alike in countries with little or no organized service and in countries where schooling, residential care, and supervision of the retarded adult in the community had been the concern of public agencies and voluntary associations for many years. It was started by no visible force;

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there were not then, nor were there to be for another decade, any international professional or voluntary organizations specifically active in the field of mental retardation. Nor were any of the United Nations agencies to take more than a sporadic and limited interest, while programs of international organizations in mental health, child welfare, and education only rarely included any emphasis on mental retardation. In 1955 Ν ARC's International Relations Committee distributed a twenty-page bulletin on mental retardation programs in twentytwo countries. By 1957 the Committee had active contacts with some forty countries, and two years later with sixty, twenty of which had national associations; in another twenty-four, one or more local groups were active. T h e present count of national or federated associations with parent leadership stands at twenty-eight. In Europe organizations exist in Belgium, Denmark, Eire, Finland, France, Germany, Iceland, Italy, the Netherlands, Norway, Sweden, Spain, Switzerland; in the United Kingdom, the Scottish and Northern Ireland societies have affiliation with the National Society for Mentally Handicapped Children of England and Wales. Asia, Africa, and the Near East are represented by associations in Australia, Israel, Japan, Rhodesia, Turkey, and New Zealand, and in the Western Hemisphere there are associations in Brazil, Canada, the Caribbean islands of Jamaica and Trinidad, the United States, and Uruguay, the first national association to be founded in South America. Countries presently having one or more local voluntary organizations are somewhat harder to list with assurance since changes occur rapidly. T h e y include Yugoslavia, Greece, Poland; South Africa; Iran, Pakistan, India, Ceylon, Thailand, Indonesia, Malaya, the Philippines, and Hong Kong; Argentina, Chile, Peru, Colombia, Ecuador, Venezuela, Panama, Costa Rico, Guatemala, Mexico; Bermuda, Bahamas, Barbados, Puerto Rico, and the Virgin Islands. Who are the people behind these organizations? In most cases, the initial spark has come from the parents themselves, joining

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together to provide, procure, or improve services and opportunities for a better life for their retarded children. In most cases other citizens and concerned professional workers cooperate and participate in various ways in the program of the organization. T w o examples of national associations which from the beginning were formed as a combined parent-professional-citizen movement are those in Germany (1958) and Eire (1961). Quite a few examples could be given of associations where the initial impetus has come from an individual physician (Turkey), an educator (Uruguay), the speech therapist and the social worker of a mental health clinic (Greece). In Manila, a psychologist went from house to house to find the families with hidden children so that a school class could be started. What are these organizations doing? T h e activities of the associations have varied widely in different parts of the world depending on immediate needs, although the ultimate goals are similar. In general, as was the case in this country, one of the most urgent needs after counseling for parents and general public education efforts has been to procure educational and training facilities to enable the more severely retarded child to remain in the community. If day school programs are adequate, the associations seek to provide for the young preschool child, for recreation needs of both the retarded and their families, for more adequate residential care, and increasingly for the adolescent and adult retarded—whether vocational training and open or sheltered employment, recreation, counseling, or sheltered living in the community. In the developing countries, where the evolution in the protective large family system, industrialization, and migration are bringing cultural changes, the urgent need may be to provide medical and residential care for the most severely retarded, although day school programs and opportunities for training are sought by an increasing number of educated parents there for their retarded children. Relationships to public and professional agencies differ markedly and are highly dependent on intricate cultural patterns. In Holland, with its long-standing public/private interrelationships,

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a high percentage of government support is the general pattern for all voluntary services. Some direct government subsidies have been received by the German and Italian associations to maintain a national office; government payments are made to the local Canadian associations to provide classes for children not accepted in the special classes of the public schools. Noteworthy is the situation in Denmark, where the Director of the State Mental Deficiency Service has frequently pointed out the importance of the Danish national parents' association in bringing about basic legislative reforms. Since 1959 this association has had an official representative on the eight-man managing directorate of the state service, as well as on the regional boards of control. T h e training of personnel is always a concern of the voluntary associations, whether in Ecuador, where means are being sought for specialized training outside the country so that services can be initiated, or in Britain, where the recent report of the Ministry of Health's "Scott Committee" recommending more adequate training of staff of training centers for the mentally subnormal has been the subject of much intensive discussion. T h e emphasis on research in mental retardation which has characterized N A R C has been followed by the associations in some other countries, notably Britain, where the National Society for Mentally Handicapped Children initiated and supports the Journal of Mental Deficiency Research and is making substantial grants for the support of basic research. In Canada, the national association has established a Scientific Research A d v i s o r y

Board

and is presently raising a $100,000 research fund. An initial grant from the Danish national association resulted last year in the establishment of a new Foundation for Research in Mental Deficiency in that country. From the earliest overseas correspondence between members of the parent-sponsored movement until today, one finds a deep interest in and a desire for the exchange of information and experience, and the conviction that we can and must learn from each other.

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What can we leam? A brief mention of some of the programs in other countries which are of particular interest to us would include Sweden's small residential units, the specialized three-year personnel training courses for young people in Norway and Denmark, the patterns of work and living for the severely retarded in the Dutch communities, emphasis on sense training in Japan and on motor development in Germany, Britain's research in learning processes, teaching methods developed by Dr. Maria Egg-Benes in Switzerland, and the correspondence school system in New Zealand, to name only a few. What of future international developments? The need for eventual organization of an international association has long been felt by persons concerned with the problem of mental retardation around the world. N A R C early recognized the great difficulties in maintaining an international organization which could provide service as well as arrange congresses, and the importance of truly world-wide representation in such an organization. It therefore has hesitated to push prematurely for international organization but has constantly attempted to maintain and further informal contacts and exchange of information. As an example, its international newsletter, issued from time to time, reaches organizations and individuals in some 70 countries. In 1959 the first step toward the creation of a formal international organization of the voluntary associations was taken when three professional leaders of the movement in Holland, England, and Germany met to plan for a European League of Societies for the Mentally Handicapped. "The League was brought into being in World Health Year i960, by representatives of parent organizations, professional groups and by individuals anxious to advance the interests of the mentally handicapped without regard to nationality, race or creed." Holland, England, Germany, Denmark, and Italy were initially represented on the Executive Council, which outlined the League's purpose as follows: Through the creation of a common bond of understanding between parents and others interested in the problems of the mentally handi-

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capped, the League hopes to secure on their behalf from all possible sources, the provision of efficient remedial, residential, educational, training, employment and welfare services. The League seeks to realize its objects by: (a) the interchange of experts and information on the developing services for the mentally handicapped; (b) the exchange of workers in the field of mental handicap between one country and another; (c) the comparative study of legislation in member countries and beyond, concerning the mentally handicapped and the promotion and implementation of same in their favor. In 1961 an inaugural three-day congress, attended by four hundred people from twelve European countries and eight nonEuropean countries, was held in London, followed by two days of observation tours in the Netherlands. At the September, 1962, meeting of the League Assembly in Copenhagen, the decision was made to open the membership to all parent and other national organizations working primarily in the interests of the mentally handicapped, in any part of the world. The first Chairman of the new International League is a Swedish physician, Dr. John Philipson, parent of a thirty-yearold retarded son, president of the Swedish national association, and active internationally with the Red Cross. An International Congress and League Assembly was held in Belgium, October 21-25, 1963. Intercontinental communication among those interested in the scientific study of mental retardation goes back nearly a century, as is attested by the face of Seguin, the French pioneer, on the insignia o£ the American Association o n Mental Deficiency,

founded in 1876. This professional organization, devoted exclusively to mental retardation, welcomes professional workers from all relevant disciplines. It has always had a few overseas members and as early as 1946 took a definite step toward fostering international communication in the field of mental retardation by designating the 1948 annual meeting in Boston as the "First International Congress on Mental Deficiency." Representatives from twelve countries attended that meeting and the A A M D subsequently set up a Committee on International Congresses which

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remained active through the following years. A decade later it joined with a corresponding committee of the Royal MedicoPsychological Association of Britain to initiate plans for organization of an international multidisciplinary "Conference on the Scientific Study of Mental Deficiency" during World Mental Health Year. Convened in London in July, i960, the congress was attended by nearly 700 delegates from twenty-seven countries, with a week's program covering eleven aspects of mental deficiency. Meanwhile, in July, 1959, the so-called Portland group had arranged a "First International Medical Conference on Mental Retardation" in Portland, Maine, following the World Pediatrics Congress in Montreal and attended by representatives of some twenty-five countries. T h e same group organized another conference in Vienna, Austria, in August, 1961. Out of these developments grew an international committee on which are representatives of the American Association on Mental Deficiency and of other professional groups and scientists in Austria, Britain, Chile, Denmark, Germany, Italy, Norway, and Sweden. A n International Congress on the Study of Mental Deficiency will be held in Copenhagen on August 7-13, 1964, at which time a formal constitution will be adopted forming an International Scientific Association on Mental Retardation. T h e question might be raised as to whether in the long run there is need to maintain two separate international organizations, one scientific and one more general, in the field of mental retardation, but for the present the pattern has been clearly set and there should be opportunities for cooperation in bringing a better world and better opportunities to the mentally retarded and their families.