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and seemingly so tomorrow. So there is no opportunity to carry over and we do want to hear everybody that is here to be heard on any of these subjects.
Now, we are approaching 2 o'clock. Would it be possible for you to so disperse or limit your speakers that we could finish the subjects that you are interested in by quarter of 3 ?
Dr. TRAEGER. Yes, sir.
Dr. TRAEGER. We will do our best, but I will probably have to swindle a couple of minutes more.
The CHAIRMAN. In fact, I regret to say even a quarter of 3, but it is only in fairness to all who are here today. We were not aware of the fact that so many others would be here.
Dr. TRAEGER. We will try and limit the presentation of the various categories to approximately 10 minutes.
We will call on Dr. Glidden Brooks from cerebral palsy, please, and see if you can abbreviate your remarks, Doctor.
STATEMENT OF DR. GLIDDEN L. BROOKS, MEDICAL DIRECTOR,
UNITED CEREBRAL PALSY ASSOCIATION
Dr. BROOKS. I shall be glad to abbreviate my remarks.
If the committee would direct their attention to the prepared statement which I have made, I would appreciate it if the full statement would appear as a part of the record.
The CHAIRMAN. I want that to be understood by all of the witnesses that any prepared statement that you have will be made part of the record the same as if you had delivered every portion of it, and I am assuming, therefore, you will be giving us a summary of the general statement. I want the record to be as complete as we can make it.
Dr. TRAEGER. Does that include, Mr. Chairman, supplementary evidence which we would like to send in within a day or two?
The CHAIRMAN. Yes, sir; indeed
You will have to become pretty strong in regard to the length of your statement before it will be beyond what I am willing to see get in the record. I am very anxious to build the record up and make it as full and complete as possible.
(The full prepared statement by Dr. Brooks follows:)
Mr. Chairman and members of the committee, I am Dr. Glidden L. Brooks, of New York City, N. Y., medical director of United Cerebral Palsy Associations, Inc. I am honored to be able to speak before your committee concerning the medical aspect of cerebral palsy and its challenge.
Cerebral palsy is a complex and highly variable disturbance of function which is the outward reflection of damage to the brain. The most prominent reflection in disturbance of motion, although other functions mediated in the brain may also be affected.
The complexity of cerebral palsy is a reflection of the complexity of the brain. Essentially, what basic knowledge we have about cerebral palsy is limited by what we know about the brain, and, therefore the vast amount we must yet learn about cerebral palsy is conditioned by what we have yet to find out about the brain-how it functions and how it responds to and recovers from a variety of damage-producing situations.
The human brain is a highly complicated and little understood organ. It is the seat of reason, of perception of those qualities that distinguish man from the lower animals.
The brain-to give a somewhat oversimplified description—is made up of nerve cells. Each nerve cell bas long strands which, somewhat like wires, connect it to numerous other nerve cells, and by way of the cranial nerves and the spinal cord to all parts of the body, such as muscles.
The majority of these nerve cells are arranged in layers around the outside of the brain, and different centers of the brain control different parts or functions of the body
Collections of nerve cells in other parts of the brain are important in helping to stabilize, coordinate, and otherwise influence this control by adding impulses to the whole "brain message” which starts in the cerebrum and ends with the performance of a body function,
A significant fact about nerve cells is that, once destroyed, they are not replaced. Thus, when any part of the brain is damaged, the bodily functions associated with that part of the brain are permanently impaired unless other parts of the brain can be trained to substitute for this function. In addition to func tions of motion, activities of the brain which have to do with sensation, or indeed with power to reason, may be affected by injury to the nerve tissues.
Just what this impairment may be depends on the location of the damage, the number of cells destroyed, and many other factors. Such damage can be caused by any type of injury, or by failure of the brain to develop before birth.
Most adults have learned as children to eat, walk, talk, and perform countless functions of everyday living quite naturally and almost automatically. This is possible because normal people, early in childhood, establish delicately balanced control of their muscles so that they work together smoothly and efficiently. A person with cerebral palsy has suffered damage to the mechanisms which pro vide this delicate control; therefore, as a child, it has been impossible or, at best, painfully difficult for him to learn to do even the most simple acts which the rest of us take for granted. For example, in attempting to hold a pencil up as I am now doing, his motions are strained and awkward. He may overreach it, be unable to grasp it and unable to hold it still in any useful position. The same imbalance may characterize the ability to walk or even to stand or sit up. One of the most unfortunate difficulties stems from difficulty with muscles of the throat and tongue so that efforts to talk result in little more than grunts and unattractive noises accompanied by grimaces and drooling.
The appearance of a person so afflicted too often leads the uninformed observer to the conclusion that the cerebral palsied individual is feeble-minded. This affords an unthinkable injustice to the large numbers of cerebral palsied individuals who are intellectually normal or superior. It is true, of course, that a sizable number of cerebral palsied individuals do have less than normal intellectual capacity. In the past, individuals have been mistakenly placed in the feebleminded group because they had unrecognized disturbances of perception. They were deaf, they were partially blind or had other deep-seated difficulties in seeing the world as the normal person sees it. When these difficulties are recognized and compensated for, the stigma of feeblemindedness has been lifted.
Some 200,000 children have cerebral palsy. With proper care, a high percentage of them can live useful and independent lives. Cost of such treatment and training is extremely high, and few families can afford it. Only a few States have been able to take even first steps toward developing programs for these children.
Thus, we see that the challenge of cerebral palsy is highly complex. It is also sizable-according to the best estimates, there are more than half a million cerebral palsied children and adults in the United States.
It is a challenge to research scientists to increase our knowledge about cerebral palsy, for the limits of our knowledge of this condition ultimately determine what we can do for it.
Physicians are faced with a twofold challenge. Eventually, they must develop ways of preventing cerebral palsy. And right now they must help the palsied overcome their handicaps, for while the destroyed brain cells cannot be restored, the palsied can be trained to use their abilities to compensate for their disabilities.
Helping to provide such a design for living requires special education, therapies, and loving and understanding care in the home. That is the challenge to educators, therapists, and parents.
And finally, it is a challenge to the general public to help provided the four requirements in meeting this challenge :
(a) Knowledge and understanding of cerebral palsy. (b) Effective lay and professional leadership.
(c) A program of service-a carefully planned development of all our resources which can be brought to bear on the problem of cerebral palsy.
(d) The money which alone can make these essentials possible.
Much has already been done to help provide these requirements. As is the American pattern , a group of citizens concerned with this problem organized a voluntary health agency to press a united attack on cerebral palsy. This agency is United Cerebral Palsy and its many affiliates.
In general, the aims of this organization are:
1. To direct and unify an overall, long-range attack on the entire problem of cerebral palsy.
2. To help provide needed treatment, care, and education for the palsied.
3. To help the palsied to social adjustment and the development of a practical design for living.
4. To train the cerebral palsied for employment and help them find jobs.
5. To foster and direct research into the causes and treatment of cerebral palsy.
6. To help solve the critical shortage of specialists working with the cerebral palsied.
7. To give guidance to parents of palsied children to help them solve their own and their children's problems.
8. To encourage legislation designed to help the palsied.
9. To make available information valuable to persons concerned in the care, treatment, and education of the cerebral palsied.
10. To promote public understanding of the problems and needs of the palsied. 11. To raise funds for all these purposes.
The ultimate aim of United Cerebral Palsy and its affiliates is the eventual subjugation of cerebral palsy, which has mystified mankind for centuries.
In the fight against cerebral palsy, there are now increasing provisions being made for much-needed diagnosis, treatment, care, education, and other assistance for as many as possible of the cerebral palsied in their communities. Today, United Cerebral Palsy affiliates around the country are working diligently, on such programs of assistance. As this effort continues to grow, we have hopes for a much brighter outlook than was presented to you in the figures from Connecticut cited this morning.
However, we know that this individual help will not solve the real problem of cerebral palsy. It is obvious that the eventual conquest will come in the same manner that has proved successful with other health foes-organized research to discover:
1. The cause or causes.
4. Palliatives, remedial procedures and perhaps someday a cure for some types of damage.
This is a mammoth undertaking, much too big to be financed by any local affiliate or group or single national voluntary organization. To be effective, however, it must be pursued on the national level, and to this end, United Cerebral Palsy affiliates from all parts of the country alocate a certain percentage of their funds to make possible this important national research program. In United Cerebral Palsy's first 4 years, these grants for research and training of personnel have totaled $1,097,000 paid or budgeted out of this year's receipts.
In the recent past much has been learned about cerebral palsy that is of great value. We are indebted to many members of the medical profession and allied fields for a body of knowledge that provides a good basis for future progress. United Cerebral Palsy is building upon this base by developing an organized program of research in the field.
Medical leaders recognize that the several solutions to the manifold problems of cerebral palsy must rest upon the contributions of men and women expert in the techniques of the basic sciences and in the application of the results of such fundamental studies to the patient with cerebral palsy. For centuries physicians faced with the many unsolved questions in the field of cerebral palsy worked literally in the dark. The great advances in the specialities of medicine made possible by contributions from laboratories where the techniques of physics and chemistry are applied so effectively to the disciplines of physiology, biochemistry, pharmacodynamics, organic and biophysical chemistry indicate that there are possibilities for progress in cerebral palsy too.
It was with the purpose of making possible the application of these great advances to our own problems that the research advisory board of the United Cerebral Palsy Associations organized its national research program. Beginning with a broad definition which includes the nature and consequences of damage to the central system, the research advisory board sought to state clearly the questions for which answers must be obtained. Believing that positive action was essential, the board enlisted the aid of individuals or teams of specialists working in the hospital, laboratory, and unversity centers selecting not only men of established reputation working in magnificently equipped institutions, but also men of promise with ideas and a desire to follow leads of importance to them. The great emphasis upon means of preventing cerebral palsy has not excluded all possible efforts in behalf of the cerebral palsied who are with us today. New directions of research have included studies of circulation, nutrition, and precise function in the various parts of the brain. Further efforts proceed in the direction of repair of the consequences of damaged areas in the brain by surgical intervention, the use of chemical or of radiation therapy. A few of the major efforts may be listed:
Damage to the brain associated with birth-is being investigated at Columbia Neurological Institute of New York, the University of California, the Harvard Medical School and other centers.
Surgical reorganization of the brain-to make healthy areas of the brain assume the function of those portions which are damaged or destroyed-is under investigation in ingeniously contrived experiments at the University of Utah.
The effects of radiation, chemicals, poisons, and infectious agents upon the developing brain as possible causes of cerebral palsy are being analyzed at the New England Deaconess Hospital in Boston.
Chemotherapy with a newly synthesized chemical compound to relieve muscle spasm-one of the main disturbances in cerebral palsy-is a part of the research program in the University of Rochester.
Brain tissue regeneration--fundamental studies in a field which has assumed great importance only recently-is being studied with reference to nucleic acids in nerve cells at the University of Arkansas.
Studies on the life history of cerebral palsy by one of the pioneer workers in cerebral palsy, Dr. Bronson Crothers, are being conducted at the Children's Medical Center in Boston.
Fundamental approaches in neurophysiology, pathology, and anatomy are being studied at Mexico City, Philadelphia, and Boston.
Studies in neuropharmacology in Chicago, and in basic physiology in Los Angeles are included in the increasingly large program of research selected by the research council in the last 3 years.
It is, of course, impossible to predict which of the many approaches to the problems of cerebral palsy will produce results either in terms of clinical improvement, effective prevention, or basic understanding of the underlying disorders. It should be emphasized repeatedly that no single "miracle drug," no one form of treatment, nor any one piece of research may be expected to provide a single solution for the entire problem. Even though the final objectives have not been achieved, research has already done much to improve treatment and to add to our understanding of means of prevention.
The shortage of trained workers is another one of the reasons why children must go without care. As a Nation, we need many thousands more doctors, nurses, medical social workers, child-welfare workers, and other professional people especially trained in the care of children. We need many trained assistants to help relieve the load on specialists.
Far greater sums for research than can be provided by any voluntary agency are urgently needed. For these we look to the federally financed National Institutes of Health.
In the month of August 1952, the Albert and Mary Lasker Foundation prepared a chart showing the distribution of certain categories of funds by United States Public Health Service by disease category and type of activity or support. These are cumulative totals for the fiscal years 1945 to 1953. The attached chart pictures in vivid fashion the unfortunate neglect of neurology and blindness in the National Institutes of Health,
The budget for the National Institute for Neurological Diseases and Blindness for the fiscal year 1953-54 has been fixed by the Congress in the the sum of $4,500,000, a substantial increase over the allotment of $1,900,000 for the previous fiscal year. Out of the fiscal funds for 1953, the National Institute
allotted the sum of $296,924 for cerebral palsy including injury and disease to the brain where dysfunction is predominantly motor, and this allotment has been increased by the Institute to $418,756 out of the 1954 funds.
Recently Mr. Ernest Fleischer, vocational and occupational guidance consultant of United Cerebral Palsy Association, testified at a public hearing of a special subcommittee of the Committee on Education and Labor on the general subject of assistance and rehabilitation of the physically handicapped. At this hearing, Mr. Fleischer testified that the time has come when Congress should be apprised of the fact that adolescents and adults afflicted with cerebral palsy are not in a position to obtain the comprehensive service that is now being given to the physically handicapped.
While the physical disability of other handicapped persons interferes with their prospects, guidance, and training, the situation for the cerebral palsied is intensified because of the multiple complexity of their involvement. Not only are they orthopedically handicapped, but in 90 percent or more of them there will be attendant sensory and neurological disabilities. This means, to take just one example, that a palsied person may need special training to be able to speak before vocational guidance can even begin. That is why present limitations in the act in effect exclude the cerebral palsied from the benefits which Congress clearly intended for all the handicapped.
United Cerebral Palsy's public-education program is striving, with increasing success, to offset the prejudices built up against cerebral palsy over the centuries as a form of mental illness. Through constant repetition, people are beginning to realize that cerebral palsy is not a disease, not contagious, not hereditary, and not a condition of which to be ashamed. Through the media of radio, television, newspapers, magazines, brochures, displays, and the speaker's platform, the American public is gradually being made aware of the nature of this complex health problem and the necessity of combating it.