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. For that matter, we need them for the care and rehabilitation of adults with cerebral palsy. For this reason we are also providing training grants as a part of our overall research program in an attempt to provide assistance to people who wish to be trained in the various techniques of the attack on cerebral palsy. 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. The budget for the National Institute for Neurological Diseases and Blindness for this year has been fixed by the Congress at $4,500,000, which is a substantial increase over the $1,900,000 for the previous year. Out of these funds for 1953 the National Institute allotted the sum of $296,924 for cerebral palsy, including injury and disease to the brain where this function is predominantly motor, and this allotment has been increased by the Institute to $418,756. The problem of employment of physically handicapped, and especially of cerebral palsied, is one which has a direct bearing on the national economy, which Mr. Van Meter will point out as we go on. Very little has been done about this. United Cerebral Palsy Associations is allocating some of its funds to developing active and increasing knowledge and interest in this area. United Cerebral Palsy's public education program is striving with increasing success to offset the prejudices built up against cerebral palsied over the century 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. Mr. HESELTON. You have a chart showing the funds raised and allocated by voluntary agencies. It seems that is a quite wide variation between the amount that the society is able to obtain and the amount assigned for research. I assume that is because of a lack of personnel to carry out research; is that right? Dr. BROOKS. That is not so. The discrepancy is so, and the reason for it is that this organization is not organized solely to support research. Research is only a part of our program. Seventy-five percent of the money which is raised stays in the local community to provide these services to cerebral-palsied people that I alluded to. Twenty-five percent of it comes to the national and only a part of that is available for research. Mr. Van Meter has some figures which would further elucidate that. Mr. PRIEST. Do you have adequate reports to indicate this 75 percent of the funds that remain in the local communities produce very favorable results? Dr. BROOKS. I think the fair answer to that is that we do not have as adequate reports as we would like. The reasons are two: First, we are a young organization and still developing our communications so that some of our affiliates are literally doing things we do not know about. That is getting to be less and less so. The second is that results in any form of treatment or training of the cerebral palsied are painfully slow and we can only look back over a long period of time. There is a bit of our research work that we are supporting that we have great hopes for. Dr. Carruthers, one of the pioneers in cerebral palsy, is reviewing a 20-year experience using, incidentally, motion-picture techniques. He started out taking moving pictures of his patients, and he now has them from childhood to adulthood, and we will get some more answers to the sort of questions you asked. Dr. TRAEGER. We will now hear from Mr. Van Meter. STATEMENT OF KARL K. VAN METER, EXECUTIVE DIRECTOR OF UNITED CEREBRAL PALSY ASSOCIATIONS Mr. VAN METER. If I might take advantage of the chairman's offer to depend upon the general statement that we have handed to the members of the committee, I would like to call attention to just a few points. (The statement referred to is as follows:) GENERAL STATEMENT Mr. Chairman and members of the committee, my name is Karl K. Van Meter. I reside in New York City and I have been the executive director of United Cerebral Palsy Associations for about 3 years. United Cerebral Palsy Associations, Inc., is a nonprofit membership corporation, organized in 1949-the only nationwide organization devoted exclusively to a united attack on cerebral palsy. Its humanitarian work is supported by voluntary public contributions. Its officers and board of directors serve without compensation of any kind. National headquarters are at 50 West 57th Street, New York City. United Cerebral Palsy comprises 163 affiliated State and local organizations throughout the United States. United Cerebral Palsy and its affiliates are dedicated to an all-out effort to help the cerebral palsied to take their rightful places alongside their more fortunate brothers and sisters-part of the never-ceasing struggle to preserve our freedom and the concepts we hold dear. America's youth must be strong. United Cerebral Palsy affiliates, both State and local, are devoting their energies and resources to assisting the cerebral palsied in their communities by (a) Establishing clinics and treatment centers. (b) Training physicians, therapists, and teachers. (c) Securing educational advantages. (d) Setting up recreational centers. (e) Expanding existing facilities. (f) Operating vocational and employment services for adult cerebral palsied. (g) Providing parent education. (h) Supplying transportation to and from clinics, schools, and treatment centers, in addition to many other services. The national budget committee has approved the United Cerebral Palsy Associations, a member agency, in a report to the Community Chests and Councils of the Nation. The program and budget of the United Cerebral Palsy Associations, Inc., were reviewed by a special panel of the national budget committee sponsored by Community Chests and Councils of America, Inc., and the National Social Welfare Assembly, Inc., to provide an orderly medium through which national agency program plans and requests for support may be channeled to local communities, on June 24, 1953. This panel, chaired by Dr. Ira W. Hiscock, had extensive conferences with representatives of the organization. Realizing the broad scope of specialties and services required to establish a total program for the cerebral palsied, United Cerebral Palsy Associations and its affiliates have worked diligently toward preventing duplication of existing facilities. When the National Institute for Neurological Diseases and Blindness was being written in United States public-health law No. 692, cerebral palsy was specifically stated in the law as being one of the health conditions covered. This was accomplished, in part, as a result of the efforts of United Cerebral Palsy Associations. Cognizant of the great aid that can be made available to the cerebral palsied by public agencies, United Cerebral Palsy Associations affiliates throughout the United States work closely with many State departments of health, education, social welfare, and mental hygiene. They have activated existing laws, supported revisions and new recommendations to correct outmoded programs, and assisted these departments in obtaining increased appropriations. The United Cerebral Palsy Associations affiliates work closely with other private agencies interested in the cerebral palsied. They cooperate financially and administratively with such groups as the Grotto, Elks, National Society for Crippled Children and Adults, Catholic Charities, etc., to maintain outpatient clinics, workshops, diagnostic centers, etc. In many communities the money raised by the local affiliate of United Cerebral Palsy Associations is used for grants to existing facilities in hospitals, schools, and rehabilitation centers. The major emphasis for 1953 and 1954 is upon the expansion of program services. This is being accomplished by the activation of a program services committee with representatives from each of the State affiliates. Various subcommittees of the program services committee are working on specific aspects of a program, such as problems of the mentally retarded cerebral palsied, parent programs, operation of diagnostic and treatment centers, recruitment and training of personnel, recreation and camping, rehabilitation, residence schools, mechanical aids. A director of program services has been added to the staff of work with the committees and boards in development of their activities. He also visits local affiliates to survey their programs and counsel with them. New affiliates are given assistance in planning their programs. Orientation of the field staff on program needs and activities has a high priority during this year. The emphasis of the organization is on services in the local community. In the month of May 1953 there was prepared for the United Cerebral Palsy Associations a survey of its structure, finances, and affiliate activities during 1952, based on completed questionnaires returned to the national office from various local affiliates. As of December 31, 1952, there were 106 affiliates as compared with 163 at the present time. However, approximately 80 percent of the affiliates completed their questionnaires in time for the preparation of this survey. A copy of this survey is attached to this presentation. One of the oldest affiliates of United Cerebral Palsy Associations is United Cerebral Palsy of New Yory City, Inc. It was established in 1946 by a small group of parents drawn together by the common need and desperate desire to help their children crippled with cerebral palsy. In 1952 the New York City community contributed $762,000 plus for the cerebral palsied, and on page 2 of Report to the Community, issued 3 days ago by this affiliate, it shows that 89.8 percent has been spent on its program; 2.4 percent for general expenses and only 7.8 percent for fund-raising expenses. A copy of this report is attached to this presentation. It is estimated that in the United States there are 200,000 children affilicted with cerebral palsy and 350,000 adults. We are all aware of the fact that life expectancy in the United States, even in the case of permanently disabled persons, ranks highest in the world today and that medical standards and techniques in medical research in this country are outstanding. What is their span of life? These crippled persons can live as long as you and I. We are informed that many live to the age of 60 and some to 70, even to 80. ' Assuming that 10 percent of the adults are self-supporting, the remainder of 315,000 require at least $600 a year for their maintenance, a total of $189 million a year. On the other hand, if these 315,000 could be rehabilitated and made employable, even at the rate of $1,000 a year, the difference from an economic standpoint would be over half a billion dollars. Therefore, gentlemen, you realize that this is not purely a medical problem. It affects the national economy and should be treated accordingly. The difference of half a billion dollars in our economic structure must be the concern of those who guide our destinies in this great Capitol. We sincerely hope that your committee can find a satisfactory solution to this serious problem. |