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-*Presented at the 3rd Annual Convention, Canadian Association for Retarded Children, Montreal, September 15th, 1960.-

I appreciate greatly the privilege of discussing with you to-day problems of institutional care with particular attention to the so-called trainable young child. As is being brought out in this Conference, we are facing broad challenges in every area of the care of the mentally retarded, but no where are these challenges harder to meet than in our institutions. The reason for this is two-fold; institutions are built of brick and mortar, and an unwieldy, out-dated, 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 your obstacles might be an out-dated curriculum, inadequate teacher training, inferior testing programs, all matters that 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 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 to-day may appear to you as too far-fetched, too remote from the realities of to-day. However, institutional planning is a slow and cumbersome process and many of the institutions being built right to-day are out-dated 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 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 the understanding then that I am well aware and appreciative of the real progress that has been made in institutional work in our field, but that our eyes here to-day are set on the future, let me turn to the specific task assigned to me by the C.A.R.C. Institutions Committee: 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 day-room 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 of course not only in a good number of other institutions but also in many community programs. Indeed, as you undoubtedly know, 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 re-read with profit. Dr. Rosenzweig emphasized that three separate, complete programs seem to encompass the needs of almost all retarded children and then he lists the educable, trainable and custodial. Let me first state with regard to the last classification 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 some one 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, 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 low-educable 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, and I am happy to see on one of the exhibit tables here the proceedings of the W. H. O. sponsored European Conference on Mental Subnormality which took place in Oslo in 1958 and where findings of this nature were reported, because I think 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 reinforce the old classical division between idiots, imbeciles and morons which still to-day dominates our institutions, and which denies the imbecile or trainable any substantial potential for growth. Yet the most significant study by Gerhardt Saenger, entitled "The Adjustment of Severely Retarded Adults in the Community" (published by the N. Y. State Interdepartmental Health Resources Board, 1958) and 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, demonstrates how much we have underestimated the capacity of those classed as trainable or imbecile.

But the problem of the insuitability 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 you heard 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 to refer to grown-up men and women as boys and girls and to subject them routinely to treatment appropriate for young children. But does it really make any sense, my friends, to say that the 26 year old 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-four day and commuted alone by street-car.

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 walk over to the exhibit table where free copies are available of the Proceedings of last year's C.A.R.C. 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.

My friends, I am keenly aware that with the limited time at our disposal, I must rush through material that deserves a far more detailed presentation. What I have been trying to convey to you is that we have indeed allowed to a marked extent years spent by the more severely retarded in our institutions to become "Lost Years", because traditional prejudice and prejudgement have kept us from recognizing and developing the potentials of these individuals. To 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. I realize that I will have to do a lot of missionary work in our own Association in the United States, and I shall do so on October 6th at the N.A.R.C. Annual Convention in a speech entitled "Are We Retarding the Retarded?"

Let me now turn to some of the specific points which I am sure the C.A.R.C. Institutions Committee expects me to suggest as guides for their future activities. Some words first about institutional architecture, again with particular emphasis on the group we are discussing here to-day.

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 U.S.A. institutions are concerned. Theirs is an unmitigated herd existence, with no escape from the large group to which they are assigned during waking and during 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 over-stimulation 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 day room with benches (and in the luxury institutions, tables and chairs) and a TV set loudly blaring away. For the sensitive youngster, for the child who is upset, there is, in the words of the spiritual "no hiding place down there". 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 "home-like 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 it being homelike but it was totally different from 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.

I regret that there is no time here to-day for me to relate what I have learned in my travels in Europe and the U.S.A. regarding substituting wasteful costly state hospital architecture with imaginative building methods adapted to the needs of the more severely retarded about whom we are talking here.

Just a word about size of institutions. The State of Connecticut has just declared 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 C.A.R.C.'s last convention Dr. Jack Griffin, Division General of the Canadian Mental Health Association, raised in his excellent dinner speech 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 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 is 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 have of course residents in our institutions who in addition to their long standing mental retardation have acquired a psychosis, a mental disease not organically connected to 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 themseleves, our institutions have created behaviour disturbances in residents, by the very type of program (or better lack of program) offered them.

But the severe mongoloid child with associated physical handicaps is not a problem of psychiatric care, nor is the hydrocephalus or the early detected phenylketonuric 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 to-day makes possible. The extent to which the life span of the mongoloids and indeed of all 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 an educational program or may develop problems requiring a psychiatric setting.

Some people have advocated that it would be more efficient and more economical to have smaller and specialized institutions. For instance, separate pediatric hospitals for mentally retarded children requiring extensive medical care, residential schools for those who for various reasons cannot live with their family but need primarily an intensive program of training and education (many of this latter category of course should eventually be accommodated in the kind of foster care program we heard about yesterday from Mr. Pichey of the Southbury Training School.) Others feel that the large multiple-function institution will remain indispensible. The main point I would want to stress here is that the institutional structure should be such 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 not only have some interesting sociological studies but the testimony of some 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 change over the leadership of our retardation institutions to educators, for instance. To 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 thirdly the business administration. To the extent that social work and psychology 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.

The training department, on the other hand, should have full control not only of academic, vocational instruction and recreation but also for what is either referred to as ward supervision or "home life".

This type of an institutional organization would assure as much the effectiveness of the medical program as of the training function and the specific professional background of the administrator will be less important.

One may ask where the kind of boarding home program so ably described yesterday by Mr. Pichey 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 sequel to institutional care?

From what I have just now outlined you have gathered that I attribute "The Lost Years" of the trainable child your Institutions Committee talks about, 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 just discussed but also in the type of "rank and file" working force institutions utilize.

Two 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. The strikingly differing needs of the various departments of our institutions need 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? They may come from good, small childrens' institutions from 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 to deliver the full measure of his charge. I have tried to indicate here to-day in the limited time at my command 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.