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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.
DISTRIBUTION OF CERTAIN CATEGORIES OF FUNDS OF U.S. PUBLIC HEALTH SERVICE
By Disease Category and Type of Activity or Support
Cumulative Totals: Fiscal Years 1945 through 1953
be affected. of motion, although other functions mediated in the brain may also tion of damage to the brain. The most prominent is the disturbance highly variable disturbance of function which is the outward reflec
First of all, what is cerebral palsy? Cerebral palsy is a complex and of a voluntary organization attempting to do something about it. outline for you the problem of cerebral palsy within the framework which was an excellent introduction to the subject. I shall try to to say against the backdrop of Dr. Traeger's testimony this morning,
Dr. BROOKS. I would like the committee to consider what I have
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 learn about cerebral palsy is conditioned by what we have yet to find out about the brain-how it functions and how it responds and recovers from a variety of damage-producing situations.
Most adults have learned as children to eat, walk, talk, and perform countless functions of everyday living quite naturally and almost automatically. That sort of movement 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 provide 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. When he talks, it is with great effort, and he is unintelligible and grunts and drools, and otherwise presents an unattractive appearance.
The appearance of a person so afflicted too often leads the uninformed observer to the conclusion that the cerebral palsied individual is feebleminded. This interpretation affords an unthinkable injustice to the large number 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 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 can be recognized and compensated for then the stigma of feeblemindedness can be lifted from these people.
About 200,000 children in this country, according to the best estimates, have cerebral palsy. It is being demonstrated that with
proper care a much higher percentage of them can live useful and competent lives than formerly thought possible. However, the cost of treating and training them so this is possible is extremely high and only a few families can afford it. Only a few States have taken noticeable steps tovard providing it at State expense.
The challenge of cerebral palsy is a challenge to research scientists such as you have heard from this morning. The limits of our knowledge of cerebral palsy are the limits of our scientific knowledge. Therefore, No. 1 in priority, if the gentleman wishes, I would say would be research. Physicians are faced with a twofold challenge in this area. Eventually research must be directed toward preventing cerebral palsy, since I am sure it was made clear to you that it is very unlikely for a cure to be turned up for anything with as many different causes and phases as cerebral palsy.
Now we must develop increasingly useful methods of helping the cerebral palsied overcome their handicap. In other words, we must train the palsied to use their abilities to compensate for their disability.
Helping to do this requires specialized education, specialized occupational therapy, physiotherapy, understanding and care at the home. It has been pointed out already that these people were outcasts at one time. Even the parents of such children need to be educated as to the attitude they should take toward their own children. That is a challenge which goes to parents and educators and therapists.
Finally, there is a challenge to the general public to provide what we have listed as four requirements needed to do this.
One is a knowledge and understanding of cerebral palsy. We cannot do anything about it if we do not know anything about it.
Second, effective lay and professional leadership. That begins with leadership in the research area, which we have heard so much about this morning, and goes all the way down to leadership at the level of the general public.
We need a carefully planned program of service because this training process is so expensive and time consuming, and our resources are necessarily limited. We must husband our resources, and carefully planned and carefully developed programs are necessary.
The last of the four things is money, and we need a great deal of it.
Much has already been done to help provide these requirements. As is the American pattern, a group of scientists concerned with this problem have organized a voluntary health agency to press a united attack on cerebral palsy. This agency is United Cerebral Palsy, and its many afliliates. In general, the aims of this organization are to focus solely upon cerebral palsy and to mobilize all the resources of the community.
In the case of the national organization, it means the country; in the case of local organizations, it means the community from which they derive their support. They should mobilize all the resources of the community, resources already there and not being used and potential resources that may be developed--mobilize all the resources, real or potential, that can be brought to bear upon this problem. That is what we mean by planning.
The alternate aim of United Cerebral Palsy and its affiliates is the eventual subjugation of cerebral palsy, which has mystified mankind for centuries.
In this fight against cerebral palsy there are now extensive provisions being made for much-needed diagnosis, treatment, care, education, and other assistance for as many as possible of the cerebral palsied and their community. It is encouraging to see what is going on.
The evidence which has been submitted to you, but not read this morning, points out that there is great need for much more activity in most States. Today United Cerebral Palsy affiliates around the country are working diligently on such programs of assistance, and as their efforts continue to grow, we have hopes of a much brighter outlook than we would be able to present to you today. However, we know that this helping of the individual cerebral palsied, important as it is, will not solve the real problem. It is obvious that the eventual conquest will come in the same manner that has proved successful with our health foes-organized research to discover, first, the cause or the causes; second, better methods of technique of treatment; third, probable, possible, or even partial preventives, palliatives, remedial procedures, and perhaps some day a cure of 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 at all effective, however, it must be pursued on the national level and to this end United Cerebral Palsy affiliates from all parts of the country allocated a percentage of their funds to make possible the support of medical research at the national level.
In United Cerebral Palsy's first 4 years the grants for research and training have totaled $1,097,000 paid or budgeted out of this year's receipts.
The 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 technique 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 many unsolved questions in the field of cerebral palsy, worked utterly in the dark, and you got this morning a little insight as to just how dark the early history of these neurological disorders is. The great advances in the specialties of medicine, which made possible 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 also.
It was 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 Association organized its national research program. Believing that positive action was necessary, the board enlisted individuals or teams of specialties, working in the hospital, laboratory, and university 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 functions 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.
We have listed in our report a brief summary and examples of the sort of research that we are supporting. In the interest of time I will not read that. It is of course impossible to predict which of these many approaches to the problem of cerebral palsy will produce results, even in terms of clinical improvement, effective prevention or basic understanding of the underlying disorders. It should be emphasized repeatedly in cerebral palsy there is no single miracle drug, no one form of treatment, nor any one piece of research that may be expected to provide a single solution of the entire problem.
Another problem is the shortage of trained workers. As a nation we need many thousands more doctors, nurses, medical social workers,