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by Dr. Gunnar Dybwad, former Executive Director, National Association for Retarded Children.

An address presented at the 1959 Annual Convention of NARC.

It shall be my purpose here to discuss an outline of some of the changes and developments we need to expect in the residential care of the mentally retarded. Some of these matters may seem far distant from reality in one State, yet may already be partially in the process of establishment in another State. In my constant travels across the county I have opportunity to observe the striking differences in practices between the various States, and this, of course, is as true in Mental Retardation as it is in other fields of human welfare.

I am well aware that in the 20 years of my acquaintance with Mental Retardation institutions tremendous progress has been made, and there is ample reason to recognize the valiant and outstanding efforts of the administration and the staffs of many of them. However, these institutions had suffered the neglect of many decades, and even after such valiant and outstanding efforts we still find, almost universally, quite serious deficiencies.

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. And so even in the field of mental retardation some people have maintained that as far as the future of State institutions for the mentally retarded is concerned that there is no basis to think of such future since "Institutions are on their way out."

I most strongly disagree with this view. To 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 whom 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. This 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 young mentally retarded children who 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 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 in future residential care 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.

To be sure, we shall first of all provide hospital facilities for those so severely handicapped as to require permanent around the clock nursing care. May I plead with you at this point to strike the words "custodial care" from your word book 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 humanitarian and concerned 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 educational program over a period of one, two or three years, which would help the youngster sufficiently to 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 intensive specialized education nurture which would enable them to make the kind of progress other more fortunate children can make in community classes.

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Another group that 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. Gerhardt 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 the 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 become too much for them and they would wish for a more sheltered environment with others like themselves. In contrast to the other programs 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 of them were presented as temporary programs providing for eventual and in some cases early return home. Furthermore, long-range planning for residential care must take into account that certain new community programs, such as day care centers, can bring sufficient relief to the parent 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 for the convenience of the audience I have brought you here today several specific categories for whom a new type of residential facility might be applicable, does not mean of course 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 families 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, 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 decidely 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 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 which ways we need to improve the personnel standards pertaining to each. Rather I would like to emphasize here a general problem which has impressed itself on my mind as being a 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.

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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. The 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.

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 way in which the communication system is set up 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 the conference in the administration building, the seat of all wisdom, affects adversely meaningful participation by the attendants' staff.

Again a good number of institutions have made efforts 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. The 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 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 "over training" 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 out 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 for specific closely supervised menial ward duties, rehabilitated former patients as special employees under civil service regulations. To 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 such definite shift in our patterns of institutional work. Here is a job 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 course of particular import. As you know a controversy is going on at the moment in many states as to whether institutions for the mentally retarded should be exclusively administered 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 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 consider 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 here by contrasting the physician with housekeepers or caretakers, scarcely a comparison a non-medical 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 non-medical administrator. This is something that 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 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 will 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 in continuing service 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 non-medical 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 programming 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 catch-all facility, a stop-gap 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 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.

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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. The question, however, is not whether one or more pediatricians are listed on the institution's roster. The question is to what extent they actually do have opportunity for continuous adequate pediatric practice on behalf of the institution's residents. To 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 mid-western 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. The point of my story is that within an astonishingly short time 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.

The point of my story is, of course, that this staff was not oriented to mere "custodial" care in its old-fashioned sense. They 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 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 towards 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). There 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 regards to planning for the residential facilities of the future pertains to the building program itself. Two and a half years ago the NARC 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 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 to predict that the instituion 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.-sic- This parallels the considered opinion of mental health leaders, both in this country, and especially abroad, and it is interesting that already 25 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.

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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 would make possible a more individual 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 housing units 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.

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 severly 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 the life of 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 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.

Again let me remind you of what I told you briefly at last year's convention concerning the problem: 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 insist that similar imagination should be shown in the building programs for the mental retardation housing of the future.

For my final comments in this admittedly inadequate and partial summary of institutional planning for the future, let me refer to a different type of personnel problem that 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 by assisting in ward service (as they have done for a number of years now in many of our general hospitals). 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 among 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. And here again of course we already have seen some outstanding examples, particularly in the crisis during 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. This is no more a revolution than what we are aiming at in our institutions.

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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.

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 day room 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 will 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 whom we entrust our children. Some few of our groups have already re-adjusted 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.

You may have wondered why I have referred only to public institutions in my comments. 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 out 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 that private institutions need not just be able 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 Spock 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 worthwhile, even economical."