Developing Patterns For Aid To The Aging Retarded And Their Families

by Gunnar Dybwad, J.D., Executive Director, National Association for Retarded Children, New York City

Editor’s Note: Gunnar Dybwad was an early and prominent advocate for people with mental retardation and other developmental disabilities. From 1957 to 1963 he was executive director of the National Association for Retarded Children, now known as the Arc. For a decade, Dr. Dybwad taught at Brandeis University, where he was professor of human development and founding director of the Starr Center for Mental Retardation at the Heller School.

In the still very limited literature in the field of mental retardation, the many volumes of Proceedings of the past Woods Schools Conferences have a place of high distinction because of both the quality and the timeliness of their presentations. Indeed, a good deal of what is going to be discussed here tonight and tomorrow was already foreshadowed to a considerable extent by the 1957 Woods Schools Conference on Vocational Training and Rehabilitation of Exceptional Children.

It is not without significance that while at that Conference, the topic mentioned only children — now, three years later, we jump all the way to the aged. 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, and in particular new drugs including antibiotics, and also by advances in general patient care, diet, and so forth.

It is important to note in the context of our discussion here 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” I am to discuss with you tonight 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 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 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 will 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 “Total 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 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 grade retarded and their increasing move towards 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 greater independence.

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 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 will 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. On 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, community-related, 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 retarded 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 life span 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. The difference may mean hundreds of millions of dollars in institutional construction and maintenance costs.

Time does not permit further discussion of residential care, but 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 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 Inter-departmental 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 benchmarks 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. To the contrary, the community adjustment of the older group in this study, men and women in their 30’s and 40’s, 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 obtain without support of agencies, it is fair to assume that with the development of such specialized agency resources, far better results can be expected.

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, selective job placement, have all been well developed in recent years, and we shall hear tomorrow some leading experts report to us on these subjects.

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 counselling, guidance and therapeutic services. Opinions differ to what extent these services should be part of the vocational training center or sheltered workshop, or 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, due 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.

Because our experience with the mentally retarded in work situations is still quite limited, it may be useful to underline a warning that comes to us from one of England’s foremost experts in our field, Jack Tizard:

“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 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.”

There will be little argument with Dr. Tizard’s thesis, but there is disagreement as to whether it is more desirable to establish separate recreation facilities for the adult retarded altogether, or whether as much as possible their activities should be integrated into existing community recreation programs.

In some communities attempts are made to bring all activities for the mentally retarded under one roof — vocational training, sheltered workshop, counselling 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 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.

There 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, 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? Mr. Ravin made it clear tonight that 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 with you tonight, 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 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 “The 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.”

Under the leadership of Edward L. Johnstone, the Woods Schools have persistently demonstrated a readiness to shoulder such broad community responsibility, and this meeting with its significant agenda again bears testimony to this.

CHAIRMAN JOHNSTONE: Thank you, Gunnar, and again our thanks to you, Mr. Ravin, for your keynote address.

Before adjourning this stimulating meeting, there are two things which I desire to do. First, on behalf of the Joint Planning Committee, I extend thanks to the press, radio, and television of Boston and elsewhere in the Commonwealth, for advance and current coverage of this Conference. It is through these media that better understanding of the needs, the problems and the potential of the mentally retarded are made widely known.

Secondly, we have a number of very distinguished guests here this evening. It is with real reluctance that I forego the pleasure of introducing each of them. However, I cannot deny myself the pleasure of asking the President of the National Association for Retarded Children to stand and I might say be acclaimed — Dr. Elizabeth Boggs.

It has been said that men cannot live by seminars alone. Nonetheless I sincerely hope that much in the way of intellectual nourishment will be the result of this series of meetings, which continue tomorrow morning and afternoon.

We are adjourned.

(The Friday evening Session was adjourned at 10:00 P.M.)

How to Cite this Article (APA Format): Dybwad, G. (1960, May). Developing patterns for aid to the aging retarded and their families. Proceedings from the The Woods Schools Conference: “The Outlook for the Adult Retarded.” Retrieved [date accessed] http://www.disabilitymuseum.org/dhm/lib/detail.html?id=2232&&page=all.