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[PICTURE] © FABIAN BACHRACH
[HANDWRITTEN] L. Magee Harry Bloomsbury Pa-
A national plan to combat mental retardation.
Mayo, Leonard W., S. Sc. D. (Chr.)
Tarjan, George, M.D., (V. Chr.)
Bazelon, David L., B.S.L.
Behrmann, Elmer H., Ed. D. (Msgr.)
Boggs, Elizabeth M., Ph. D.
Cooke, Robert E., M.D.
Cottrell, Leonard S., Jr., Ph. D.
Davens, Edward, M.D.
Dunn, Lloyd M., Ph. D.
Hellman, Louis M., M.D.
Hilleboe, Herman E., M.D.
Hobbs, Nicholas, Ph. D.
Hurder, William P., Ph. D., M.D.
Kety, Seymour S., M.D.
Lederberg, Joshua, Ph.D.
Lourie, Reginald S., M.D.
Lowry, Oliver H., Ph. D.
Magoun, Horace W., Ph. D.
Mase, Darrel J., Ph. D.
Power, F. Ray
Ritter, Anne M., Ph. D.
Stanley, Wendell M., Ph. D.
Stevenson, Harold W., Ph. D.
Tudor, Wallace W.
Viscardi, Henry, Jr., LL.D.
Willenberg, Ernest P., Ed. D.
Wright, Irene A.
Consultant to the Panel
Mrs. R. Sargent Shriver, Jr.
A Statement by the President regarding the need for a national plan in mental retardation
THE MANNER in which our Nation cares for its citizens and conserves its manpower resources is more than an index to its concern for the less fortunate. It is a key to its future. [UNDERLINED IN PEN] Both wisdom and humanity dictate a deep interest in the physically handicapped, the mentally ill, and the mentally retarded. Yet, although we have made considerable progress in the treatment of physical handicaps, although we have attacked on a broad front the problems of mental illness, although we have made great strides in the battle against disease, we as a nation have for too long postponed an intensive search for solutions to the problems of the mentally retarded. That failure should be corrected. [PARAGRAPH MARKED IN PEN]
What is Mental Retardation?
The term mental retardation itself is often misunderstood. It is confused with mental illness. Simply stated, mental retardation is
a condition resulting from a basic abnormality of the human mind. It refers to the lack of intellectual ability resulting from arrested mental development. It interferes with the ability to adjust to the demands of environment. It manifests itself in poor learning, in adequate social adjustment, and delayed achievement. Usually this condition is either present at birth or begins during childhood. The causes are many and obscure. Some have already been determined and are easy to highlight; others are beyond our present knowledge and would yield only to research.
Mental retardation is not a disease. Rather, it is a symptom of a disease, of an injury, of some obscure failure of development, even of inadequate opportunity to learn. Just as a fever is a symptom of an infection, mental retardation is a symptom of mongolism, birth injury or infection, or even inadequate stimulation in early childhood. It can be so severe that the afflicted person never leaves protective care, or so mild that it is detected only under stress or through special tests.
In most instances, it can be clearly distinguished from mental illness, for mental illness strikes and incapacitates after there has been normal development up to the time of the affliction. The younger the child the more difficult it is to distinguish between the two. However, accurate diagnosis is an essential prelude to treatment. Unfortunately, the present limitations to our knowledge in this field make this diagnosis extremely difficult when the very young are involved.
The Scope of the Problem
The scope of the problem and its effect upon is apparent in the large numbers affected by the condition. Approximately 5 million persons in this country are retarded. It strikes those least able to protect themselves—our children. It affects by its nature their relationships to all members of their families and their friends. Thus, mental retardation is a serious personal matter to at least one out of every twelve people. It disables ten times as many as diabetes, twenty times as many as tuberculosis, twenty-five times as many as muscular dystrophy, and six hundred times as many as infantile paralysis.
By 1970, at this rate we will have at least one million more retarded persons than there are at present. Over half will be children under nine, many of whom will suffer from both physical and mental handicaps. This growth in mental retardation is particularly anomalous in view of the advances in the medical sciences. Deaths at the time of birth have been reduced 75 percent in 20 years, tuberculosis 30 percent in 5 years, and such scourges as whooping cough, diphtheria, and scarlet fever have been almost completely eliminated. But the prevalence of mental retardation has steadily increased. Today, one out of four beds in State institutions is assigned to a mentally retarded person. Nevertheless, all public facilities have long waiting lists. Children needing service cannot obtain it. Our State institutions are overcrowded. The average State hospital has 367 patients more than its rated capacity. Its waiting list numbers 340.
Many retarded persons never reach a hospital. Their impairment, though mild, is a matter of serious concern. Over 700,000 draftees were rejected as unfit during World War II because they were mentally deficient
or illiterate. The number of retarded who could not participate in the war effort was even greater. In many instances, illiteracy and mental retardation are indistinguishable.
Every year 126,000 babies are born who will be mentally retarded. Neither the rich nor the poor, the urban dweller or the farmer, the captain of industry or the manual laborer, or any other part of our society is exempt from the threat. It is a national problem and it requires a national solution.
There are no reliable estimates of the cost to each family for the care of the mentally retarded. Community costs of the 4 percent confined to institutions total approximately $300 million annually. The other 96% live in private homes. The financial strain of providing for them represents a staggering burden to each family that has this responsibility.
But the financial hardships are not the most serious aspect of the problem. It is the emotional strain, the problems of adjustment, training, schooling and vocation—the attempt to make possible a full life for the child, that represents the major impact of retardation. Our goal should be to prevent retardation. Failing this, we must provide for the retarded the same opportunity for social development that is the birthright of every American child.
In addition to research, the current problems are those of diagnosis, evaluation, care, appropriate training and education, family guidance, the need for sympathetic environment, a lack of public understanding and a dearth of private and public facilities. There are difficult issues involving not only our social responsibility for adequate care of the retarded, but the extent of the responsibility of the retarded individual himself, as, for example, when he gets into trouble with the law. For a long time we chose to turn away from these problems. The standard treatment consisted of commitment to institutions, segregation from society, and silence about the affliction.
In this vast reservoir of children and adults who need various degrees of assistance to enable them to adjust to the demands of our complex society, we have a largely unused resource. As society becomes more complex, the problems will of necessity increase both in size and in seriousness.
It is just as important to integrate the mentally retarded within our modern society and make full use of their abilities as it is to make a special effort to do this for the physically handicapped. The grim struggle for survival does not allow us the luxury of wasting our human resources.
Some forms of mental retardation can be prevented; in others the degree of incapacity can be reduced; and in still others it may be possible to obtain a completely satisfactory adjustment. Steps taken thus far have concentrated upon improvements in environment and understanding. These are important and should be expanded. But real improvement will require a major effort along new lines.
Prior to 1950 relatively little attention was directed to the problem of mental retardation by either the Federal or State governments or, in fact, by private groups. During the
past decade, however, increased interest and activity have been stimulated by a few foundations, by the demands of parents, by interested lay and professional groups, and by members of legislative bodies who have been convinced of the urgent need for progress in this field.
Until 1954, no State health department offered any special services for mentally retarded children or their families. The welfare services were directed largely to long-term institutional care. Today almost every State has a special demonstration, service or training project in mental retardation as a part of its maternal and child health service program. Last year the National Institute of Mental Health spent over $2.5 million on research, technical assistance and grants in the mental retardation area, and the National Institute of Neurological Diseases and Blindness spent over $8 million on mental retardation. Next years’budget requests will double these figures. And the number of mentally retarded persons rehabilitated should also increase.
Today, the effort to help the mentally retarded takes six basic forms:
- Diagnostic and clinical services for the retarded are being expanded. There are over 80 clinics specializing in services to the retarded. Well over half were established within the past five years. These services need still greater expansion. The 20,000 children aided in 1960 represent only a small fraction of those who need the service.
- There has been an increase in the beds in residential institutions. Today there are over 200,000 mentally retarded patients in such institutions, approximately 10 percent more than there were five years ago. But the average waiting list continues to grow, and the quality of the service often suffers from limited budgets and salary levels. In the public institutions, there are less than 500 full-time physicians for 160,000 patients. The limited resources of the State institutions have been taxed beyond the breaking point. Additional increases in both facilities and manpower are necessary.
- The number of mentally retarded enrolled in special educational classes has been doubled over the past decade. In spite of this record, we are not yet meeting our existing requirements, and more such facilities must be provided. Less than 25% of our retarded children have access to special education. Moreover, the classes need teachers specially trained to meet the specialized needs of the retarded. To meet minimum standards, at least 75,000 such teachers are required. Today there are less than 20,000 and many of these have not fully met professional standards.
- Parent counselling [sic] is now being provided by private physicians, clinic staffs, social workers, nurses, psychologists, and school personnel. Although this service is still in an experimental stage of development, it offers bright prospects for helping parents to meet their social and emotional problems.
- Child welfare agencies are attempting to meet some of the needs of the mentally retarded. It is estimated 10 percent of the 375,000 children brought to the attention of the agencies through such pathways as neglect, dependency and delinquency are retarded.
The social workers and other personnel tending to the needs of these children should be trained specifically in the area of retardation.
- Finally, the preparation of the mentally retarded for a useful role in society and industry must receive more attention. In the past five years the number of mentally retarded rehabilitated through State vocational agencies has more than tripled—going from 756 to 2500—but in terms of potential, it is little more than a gesture. The problem is complex. Neither special education nor special rehabilitation procedures furnish the complete answer to employment of the retarded. New knowledge and new techniques are needed, for over 25 percent of those coming out of the special classes still cannot be placed.
Present Opportunities for New Scientific Solutions
In terms of the enormity of the challenge, all these efforts represent only a modest approach along limited lines. The central problem remains unsolved, for the causes and treatment of mental retardation are largely untouched. An attack on these questions justifies the talents of our best minds.
A moon-shot is not possible without prior discoveries in aero-dynamics, propulsion physics, astronomy, and other sciences. A successful attack on a complex problem like mental retardation also requires a host of prior achievements, trained scientific personnel, tools and techniques, profound understanding of the behavioral sciences, a spirit of devotion to the underprivileged, and a free, democratic atmosphere of inquiry. Fortunately, ours is a country in which these ingredients abound. Our leadership in these fields in unchallenged.
Much of the world’s population still struggles for mere survival; others for domination of the weaker. Our aim is individual and national dignity. Our fortune is scientific and technological ability. Our obligation is to search for the secrets of the human mind and to share our knowledge throughout the world.
Discoveries of the wheel, the internal combustion engine and principles of thermodynamics have liberated mankind from much physical labor. Two hundred years ago man demonstrated, through the discoveries of Lavcisier and Harvey, that human life is governed by universal physical laws. Major progress in science and medicine can be measured from that date. Until the last two decades, however, little research was concentrated on the nature of the living cell and its reproduction. But great strides have been made in that direction through the understanding of the chemical basis of genes and chromosomes and their governing role in life itself.
The future belongs to those who can carry forward these achievements. It is not possible to attack the causes and prevention, as well as the treatment, of mental retardation. This will require new break-throughs, but it will pay enormous dividends in knowledge about ourselves, for the functions of the brain represent an almost completely uncharted frontier. The basic research entailed in such an effort will probe the essence of human development, and its results may far exceed its objectives. Exploration and discovery in this field may uncover the secrets of life and man’s capacities, and the answers to many
mysteries of social behavior. Perhaps even more important, an understanding of the motivation and effect of human behavior offers the hope of fostering the rational behavior of nations.
Progress in the natural sciences during the past 15 years has been impressive, but achievements in the prevention and therapy of mental retardation can be even more spectacular and can bring important benefits to mankind.
The Task of the Panel
We must undertake a comprehensive and coordinated attack on the problem of mental retardation. The large number of people involved, the great cost to the nation, the striking need, the vast area of the unknown that beckons us to increased research efforts—all demand attention
It is for that reason that I am calling together a panel of outstanding physicians, scientists, educators, lawyers, psychologists, social scientists and leaders in this field to prescribe the program of action. I am sure that the talent which has led to progress in other fields of medicine and the physical sciences can enlarge the frontiers of this largely ignored area.
It shall be the responsibility of this panel to explore the possibilities and pathways to prevent and cure mental retardation. No relevant discipline and no fact that will help achieve this goal is to be neglected. [UNDERLINED AND MARKED IN PEN]
The panel will also make a broad study of the scope and dimensions of the various factors that are relevant to mental retardation. These include biological, psychological, educational, vocational, and socio-cultural aspects of the condition and their impact upon each state of development—marriage, pregnancy, delivery, childhood and adulthood. The panel will also appraise the adequacy of existing programs and the possibilities for greater utilization of current knowledge. There are already many devoted workers in this field, trained in diagnosis, treatment, care, education and rehabilitation. The panel should ascertain the gaps in programs and any failure in coordination of activities.
The panel will review and make recommendations with regard to:
- The personnel necessary to develop and apply the new knowledge. The present shortage of personnel is a major problem in our logistics. More physicians, nurses, social workers, educators, psychologists, and other trained workers are needed.
- The major areas of concern that offer the most hope; and the means, the techniques and the private and governmental structures necessary to encourage research in these areas.
- The present programs of treatment, education and rehabilitation.
- The relationships between the Federal Government, the States and private resources in their common efforts to eliminate mental retardation.
I am asking the panel to report on or before December 31, 1962 [UNDERLINED IN PEN]
PRESIDENT JOHN F. KENNEDY has challenged us to an all-out attack on one of the oldest and most devastating afflictions of mankind—mental retardation.
He has commissioned a Panel of 27 leaders in science, education, and other professions to develop a national coordinated program of research and services and to find new approaches to the solution of the many basic problems in this field. The members of this Panel have accepted the President’s challenge. They have pledged their talents and their concerted efforts to this end. They are organized and at work in a spirit of dedication and determination and ask for the active cooperation of the many parent and professional groups in the country already devoted to this cause.
Whether you are a layman concerned with this problem, or a specialist with technical knowledge, you can help by doing everything possible to strengthen your local and state programs for the mentally retarded. You can determine what needs to be done to encourage further research, develop clinical and education facilities, and to assist parents in the care and teaching of retarded children.
Send any suggestions, or inquiries you may have to the President’s Panel on Mental Retardation, Department of Health, Education, and Welfare, Room 4232, Washington 25, D.C. Additional copies of this booklet may be obtained at this address.
[SIGNED] Leonard W. Mayo
Leonard W. Mayo