While there never has been any large scale census of the mentally retarded (largely because of the absence of the necessary, specific criteria and definitions on which a census must be based), the majority of authoritative sources in this country puts the number of mentally retarded children and adults in the United States at five million. Three percent of American children are afflicted with this problem. By common definition, mental retardation is a developmental disturbance which originates before or during birth or else in early childhood.
There are presently being made in the United States conflicting claims as to which illness or handicap should be singled out as “the number one problem.” This difference in claims and statements goes back to the fact that in measuring the severity of a problem, various criteria can be used. It will suffice here to cite as an example different claims with regard to mental illness and mental retardation. Mental illness (in its broader definition, encompassing at least the severe neuroses) strikes at least 10% of the entire population. For mental retardation, the incidence is never rated higher than 3%. However, this picture changes completely when the criterion of “days of disability” is used: For a large number of the 10%, the mental illness is a passing episode and, with modern treatment methods, requires hospitalization in distinctly fewer cases and of distinctly shorter duration. Mental retardation, in contradistinction, is a lifelong disability.
The recent upsurge of interest in mental retardation has often concentrated on the medical aspects of this problem. That is, on that proportion of mental retardation where causative factors must be sought in the biological realm. This is understandable because by far the majority of the cases of severe mental retardation fall into that category. However, important as these considerations are, remarkably little attention has been given to the fact that all cases of mental retardation, regardless of their etiology, present a continuing social problem and one that is multiplied when one recognizes the compelling factor that mental retardation poses a severe social problem not only for the retarded himself but for the entire family group and extends to the community at large. Looking at the whole of the country, one becomes painfully aware that the training institutions and research centers in both sociology and social work have for many years all but ignored the problem of mental retardation.
While there are indications that the wide-spread publicity given the problems of mental retardation in recent years will result in activity from within the professions of sociology and social work, it is a reasonable expectation that, to a very large degree, these will be in the majority specific studies addressed to some particular aspect of the problem and without the benefit of a clearly recognized broad frame of reference, on the basis of which such specific studies could be coordinated with others. Yet, the fact that mental retardation is not only a lifelong but also a holistic problem, affecting all areas of existence and the functioning of an individual, makes a coordinated approach particularly important.
It would seem, therefore, of the essence that a research center in the area of applied social science undertake a concentrated broad gauged approach to the problem of mental retardation through a planful, long-range, coordinated network of studies concerned with the impact of mental retardation on society and the accommodation this problem requires from society in terms of structure and services.
This memorandum proposes that such long-range, coordinated research in the social sciences may well be developed on four levels, always with the retarded individual as the focal point of attention.
The first approach would deal with the role and functions of major institutions in our society in the problem of mental retardation: the family of the retarded, the community, and the government.
The second approach would concentrate on an analysis of the various services essential to accommodate the needs of the mentally retarded and his family, and on an evaluation of the effectiveness of the agencies and organizations presently rendering these services.
The third approach would address itself to the problem of assessing the potential role of the many professions who must contribute toward the achievement of a “well-rounded program for the mentally retarded,” an appraisal of the extent to which this is being accomplished at the present and a study of ways and means to achieve inter-professional communication and actual collaboration.
The fourth approach would be a study of the sociology of the “parent movement,” not only in its generally recognized unique role as the instigating force for the sudden upsurge of interest in mental retardation programs, but also in its apparently continued role as an active participant in the planning and management of activities in the field of mental retardation.
In the following paragraphs an attempt will be made to outline more in detail some of the subject matters which would have to be considered under the preceding four main headings. It is implicit in the nature of the problem we are presently facing in the field of mental retardation that such a listing cannot be exhaustive. As a matter of fact, it must be stressed that the first task in the study of any one of these four areas will have to be an identification and categorizing of the specific problems to be studied. This relates, of course, to the many decades of neglect in this field and the absence of any systematic research or indeed any disciplined practice in the field.
Role and Functions of Major Institutions in Our Society
Last year two families in Somerville, Iowa, had to face the fact that their child, just born to them, was a Mongoloid child. Clinical observation indicated that the health status of these children was rather similar and so was the extent to which the marks of mongolism were visible. Pediatrician A, in informing the parents of his diagnosis, confirmed by a specialist, advised them that while they definitely would have to count on marked retardation in their child, new developments in the feeding and home care, in schooling and in vocational preparation of such children left room for a good bit of hope for the future development of the child. And, in any case, he emphasized that the most crucial point was to assure this child, at least in his first years of life, the affection and security any child was entitled to enjoy in his own family.
Pediatrician X, in notifying the other family, chose to speak with the father and advised him immediately to arrange for placement of the infant in a foster home, so as to avoid the necessity of bringing him home from the hospital. He suggested that the child remain in the foster home until he was of age that would make admission to a state institution feasible. He counseled against any contact of the mother with her baby, suggesting that all business arrangements with the foster mother be carried on by the father. (This is not an exaggerated story, but I actually encountered precisely this type of case only a few months ago in a Mid-western state.)
This simple example makes clear the broad implications that will have to be studied in considering the role of the family in the field of mental retardation. Obviously, the first physician was convinced that for the retarded child the family's role should be the same as for any child, broadly speaking, one of support, of protection, of affection, of guidance.
For the second physician, the family's role reduced itself to that of a legal obligation for financial support. Otherwise, he saw a purely negative relationship—that is to say, his emphasis was to protect the family from any burdensome or potentially burdensome contact with the retarded child. To be sure, any physician would take such a position only in cases of a “more severely” retarded child. Yet we can safely assume that what he would consider a “more severely” retarded child would be based far more on social and cultural factors than on a specific medical diagnosis.
As far as the parents in the second family were concerned, their complete reliance on the physician and acceptance of a plan was, of course, not just based on their ignorance of the implications of the medical diagnosis of mongolism, but it also most likely reflected their perception of mental retardation as a shameful and degrading occurrence.
Some studies have been made which have explored these attitude factors in parents and in professional personnel, particularly physicians, but what has not been done and needs to be done is to look at this problem of the role of the family in mental retardation in a cohesive way, going beyond the mere reaction of the parents upon impact of the news that their child is mentally retarded, into a consideration of how these attitudes are reflected in the lifelong planning for the mentally retarded. In this regard, Bernard Farber's study, “The Effect of a Severely Retarded Child on Family Integration,” published in 1959, has produced important findings of areas of sensitivity in the inter-personal relations of families so affected. From one point of view, his findings can be used presently with appropriate caution in considering the question of 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 need 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.
There is needed a social and psychological appraisal of differentials in parental attitudes toward the problem of mental retardation as such, toward treatment (in the broader sense, including medical, social and educational measures), and the agencies providing the treatment, and towards 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 reflects on their planning for the retarded child.
There is ample case material available to indicate that any and all of these factors may motivate a parent to rejection of the retarded child or, conversely, to overprotection. It is significant that if these factors operate in a given way and cause the parent to plan on lifelong 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 the institutionalization, the potential expenditure of tens of thousands of dollars of public funds.
A Texas state official recently estimated that the admission of every 30 new patients in their mental retardation institutions involves an expenditure of tax funds (over the life-time of these patients) of about one million dollars. It is seldom that one can see so clearly the significant relationships between what first appears a purely attitudinal matter in a parent–child relation to major social and governmental problems, the point having to be made that there must be concern not just about possible unnecessary use over a lifetime of a bed in an institution for the mentally retarded in the face of existing waiting lists numbering into the thousands.
Closely intertwined with the study of the role of the family in mental retardation is a study of the role of the community, since in many ways the family will reflect attitudes of the community.
Staying within the context of the foregoing considerations, it is quite evident that the attitude of the community toward mental retardation will have a great deal to do with the family's role, even within the purely factual realm of knowledge. Is the community one that has seen it as important to make available to its citizens new and helpful knowledge about mental retardation? Does the community provide and make known the availability of all manners of helpful services for the mentally retarded? Much as possession of such factual knowledge might influence a family in perceiving their role toward the problem of mental retardation in their midst, of even greater significance are broader conceptualizations.
While again available case material makes it possible for us to formulate some broad assumptions, it is imperative that studies be made to show more specifically how the community's value system influences its role in mental retardation. This brings us squarely into the area of prejudices—right down to the point of the application of the segregation principle, complete with all rationalization (e.g., “We have classes for the mentally retarded, but we have them in a separate school building at the edge of town because these children feel better if they are among themselves”). It would be interesting to study the interplay between the community which segregates its retarded children and the individual families which do so likewise.
In view of the expected rapid increase in the number of adult retardates in the community, there is an urgent need to study differentially the attitude of the community towards mental retardation as it is presented by different age groups. Is the community ready to accept the young adult retarded as a member or prospective member of the labor forces and a participant in community activities as it is ready to provide for the retarded child, particularly the young retarded child, some protective care in the accustomed form of “schooling”? Available case material suggests testing whether the assumption that a shift in community attitude occurs after puberty, related to some very basic fears in the area of sex. Furthermore, there are definite indications which need testing that the community reacts differently in this respect as between male and female retardates, and this again in turn is reflected in parental attitudes toward the adolescent retarded girl.
The previous noted point of segregation can have in certain communities even broader implications, resulting indeed in social isolation of the whole family of the mentally retarded. Or, more specifically, of the siblings at certain stages of their development, seemingly particularly in adolescence. All of these foregoing factors will play a role as one studies the community organization for mentally retarded in the field of mental retardation in a particular locality.
There is evidence that such community attitudes do not just vary by degrees, but at times are diametrically opposed in cities located in fairly close proximity to each other in the same state. It would seem imperative to study the origin and significance of such differential.
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. However, aside from this particular problem for which there are parallels in some other areas, there are certain specific factors with regard to the problem of mental retardation and the role of government.
This pertains, primarily, to the need for lifelong care of individuals considered not to have the minimum endowment necessary for independent adult existence. Conflicting views come here into evidence: Our great value of a person's rights and liberty are in conflict with a temptation to deal summarily with the inadequate by depriving them of their rights. The social (legal) instrumentality of guardianship is a complicating factor, since our present legal system does not recognize degrees of guardianship, but takes on “either–or” view. (Here a study could show interesting parallels to the problem of the aged “normal” person, who is no longer deemed capable of completely independent management of his affairs, yet in many ways is still an adequate person.)
Studies are in order of the role and functions of government in mental retardation as related to existing agencies and the need for new services, the need for coordinating bodies, for interstate cooperation and formal interstate compacts (to accommodate migration within the country), the need for uniform reporting of the incidence of mental retardation and for cost accounting of public expenditures.
Here again, it is important to have studies which will show the interrelationship of these factors with the role and function of the community and the role and function of the mentally retarded.
The Organization of Service
A multitude of services has been created on behalf of the mentally retarded during these past several years, usually on a makeshift basis, and often without regard for existing patterns of related community services, largely because these services were unwilling to accept the mentally retarded.
The fact that for the past 20 years or so child guidance clinics (which originally did serve the mentally retarded) have refused to be of service in their field, brought about the establishment of special retardation clinics under pediatric, rather than child psychiatry auspices. This has led to the development, in some states, of parallel systems of clinics, the old line child guidance clinics and the new mental retardation clinics, a development that is certainly in need of careful analysis and evaluation. The role and significance of parent education as a helpful service to parents of mentally retarded children and of psychiatrically oriented parent counseling for those parents who react with disturbance to the existence of a retarded child needs evaluation.
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, largely in the blueprint stage, included small group care in half-way houses, in group residences right within the community, etc. Studies involving such experimentation are urgently needed. Proposals have 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 serve the family and child rather than separate the child from the family.
The place of the private institution has been a controversial issue that also could be greatly clarified by some careful study approach.
The extent to which community agencies can provide service for the mentally retarded along with other children, the extent to which public playgrounds can serve mentally retarded children without an effort at “segregation,” the extent to which within the total group of the mentally retarded functional service differentiations have become apparent, independent of and often contradictory to traditional psychological classifications, are all important subjects for study.
The previously mentioned anticipated rapid increase in the presence of older mental retardates in the community raises many new problems with regard to needed services for which there is no precedent in allied fields. An example is the need for good counseling facilities for the mentally retarded adult. Are present counseling services in their great dependence on the spoken word, equipped to serve effectively a group of people who typically are most deficient in language usage and modes of expression? What characteristics can we find for interpersonal “social” relations between male and female adult retardates? How do these patterns relate to the degree or particular origin of mental retardation?
The Role of the Professions Active in the Field of Mental Retardation
Mental retardation is a multi-faceted problem: it involves the geneticist, the obstetrician, the pediatrician, the biochemist, the neurologist, the psychiatrist, the social worker, the hospital nurse, the public health nurse, the rehabilitation worker, the physiotherapist, the group worker, the recreation worker, the multitude of personnel in residential facilities, the special educator, the vocational placement specialist, religious workers, psychologists, housing experts, and many more. While many of these professions have long standing collaborative arrangements and lines of communication, they do not have such in the field of mental retardation, again because it has been subjected to so much neglect. The psychiatrists, for instance, have difficulty in communicating with psychologists or educators because they not only employ a different terminology but think in terms of different groupings of the mental retardate.
Questions of professional status and ensuing rights accorded persons holding such status often interfere with effective planning. Traditional stratification of professional workers interferes with de facto relationships in agencies where these workers work side by side. An example of this would be the role of the public health nurse as compared to the role of the social worker and the psychologist in new mental retardation programs.
Within the field of medicine there is a distinct rivalry between the pediatrician and the psychiatrist as to how should be accorded the leadership role on the mental retardation team. The traditional power structure in many of the state institutions for the mentally retarded moving down in a straight and narrow line from the superintendent to the ward physician to the charge nurse to the attendants is creating difficult interpersonal and interprofessional relationships with the arrival of much needed specialized personnel. That many of these newer professions in the field of mental retardation are designated by the physicians as “paramedical,” “ancillary,” etc., is indicative of the problem here under consideration.
Another factor worthy of study is how prevailing attitudes in the community (including the “professional community”) toward mental retardation reflect on the status within certain agencies and organizations given professional workers specializing in the care of mentally retarded. The most obvious example of this has been found in the past in mental retardation institutions, which almost universally were allocated fewer professional positions in proportion to populations than were mental hospitals, received a lower per capita for food and maintenance, were less favored in terms of building programs, etc., etc. However, it can be safely assumed that in a less obvious way this has reflected itself and continues to reflect itself in other areas as well, such as the public school system.
The Sociology 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.”
The 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, i.e., as an organization that from the beginning did not limit its membership to parents, but invited participation from the community at large. Although it was only in 1954 that the Association was ready to rent premises for a national headquarters, today it has in membership more than 750 local units in 49 states, the District of Columbia, Puerto Rico and the United States military installations in Germany, Spain and Japan. Only three states have not yet organized a state association.
Even cursory examination of the history of voluntary organization in the health and welfare field will show that never before has a grassroots organization, developed “from bottom up,” with continued independence of the local groups, achieved such phenomenal success as has NARC—and not just in its organizational endeavor, not just in the multitude of projects undertaken on the local level, but also in its unprecedented influence in the halls of Congress (and State Legislatures) and in its influence on the professions and the field of research.
Although historically the blind established some definite patterns of client participation in health and welfare work, NARC might well be studied as a sociological phenomenon—a new type of “consumer cooperative” that seems to fit well into our democratic society. (While several other health organizations have followed similar plans, none seems to have stuck to this pattern as closely and as extensively as has NARC.)
The following points regarding NARC's history and present functioning seem well worth further inquiry:
How did NARC succeed in gaining strong national influence while keeping its original emphasis on the role of the local member unit?
How did NARC resolve (a) within its own ranks; (b) with outside organizations, the fear, antagonism, and uneasiness existing between professionals and lay groups?
What experience have states made which included official representatives of NARC's constituent units on State Commission, Committees, Board of Visitors of mental retardation institutions, etc.—a complete reversal of the former policy to “contain” parents and to keep them away as much as possible for any discussion of their child's care, let alone participation in such a discussion?
How did NARC manage the transition from an organization aggressively devoted to a “do-it-yourself” policy in providing services, to a recognition and acceptance of the role and contribution professional workers are making, without stifling the original volunteer effort in the policy team?
What is the specific motivational power that brings a large number of supposedly “disturbed” parents to active work in NARC?
How does the development of NARC relate to or compare with the development of similar organizations in France, England, the Scandinavian countries and other European countries and in the Far East?
Editor's Note. This memorandum was prepared at the request of the Dean of the Florence Heller School for Advanced Studies in Social Welfare, Brandeis University.