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Major crippling chronic neurological and sensory disorders Epilepsy
1,500,000 Cerebral palsy
--do--- 1,500,000 Parkinsonism.
--do--- 1,500,000 Aphasia---
--do--- 400.000 Multipjle sclerosis and other demyelinating diseases.- --do--- 300,000 Muscular dystrophy
-do--- 1,700.000 Totally blind
260,000 Blind in 1 eye.
--do--- 1,000,000 Vision barely useful..
--do--- 340, 000 Deafness (760,000 totally deaf)
--do--- 4,560,000 Chronic meningitis.
15,000 Chronic encephalitis
100,000 Chronic poliomyelitis
120,000 Brain, spinal, and peripheral nerve tumors------cases per annum.- 10,000 Myasthenia gravis.
4,000 Accident and injury to the nervous system.
---do---- ' 1,000,000 1 19.5 percent of total affected by cataracts, 15.2 percent of total affected by keratitis, 10.5 percent of total affected by glaucoma. : Approximated.
STATEMENT SUBMITTED BY V. EVERETT KINSEY, Ph. D. It is unnecessary with this committee to stress the worthiness of any program designed to alleviate blindness. Previous witnesses have pointed to the personal and economic losses involved in persons who are blind and whose vision is seriously defective. I will attempt to show that significant reduction in the blind population, or in the number of persons who will become blind in the future, would not be expected to result from the present effort expended on research in ophthalmology.
The number of persons who are conducting research in blinding eye diseases is small indeed. Let me illustrate with one disease, glaucoma. This is caused by excessive pressure on the optic nerve. There are approximately 30,000 persons blind from glaucoma in the United States. How many workers are presently devoting full time to research on this particular disease? A generous estimate is 3. Actually, there are less than 20 full-time research workers in the whole field of ophthalmology. While there are perhaps as many as 100 practicing ophthalmologists who spend a part of their time in carrying out research, their studies are of necessity of a sporadic nature. Their investigations frequently represent clinical testing more than development of fundamental principles on which new therapy might be based. The work of these ophthalmologists is seriously handicapped by lack of laboratory facilities and consulting personnel.
The explanation for the paucity of research effort aimed at preventing blindness is primarily lack of financial support. There are in the United States only 4 or 5 laboratories (Harvard, Columbia, Johns Hopkins, the University of Iowa, and the University of California) which have sufficient funds to employ a full-time research investigator or staff in ophthalmology. Rising costs and the general tendency of private foundations to curtail grants-in-aid have reduced the personnel even in these laboratories.
The need for expanded research on blinding eye diseases is apparent. The question is, How can research in ophthalomology be expanded best? In the writer's opinion this can be accomplished by long-term grants-in-aid, first to those institutions having facilities and a past record of accomplishment in ophthalmic research, and secondly to such of her institutions which may be specially qualified for such research.
1 The figures presented are based on a personal survey extending from coast to coast, and I believe are conservative. The details of this survey were published in Science (Fundamental Research in the Clinical Specialties), vol. 105, 373 (1947).
In a clinical specialty such as ophthalmology, it is absolutely essential, both for teaching and research purposes, that (1) research be carried out in proximity to large numbers of patients, for example in teaching hospitals and large centers of population; and (2) grants of any size be extended over a period of 5 to 10 years to attract and keep good scientific and medical personnel. The importance of tenure cannt be overemphasized. No amount of funds can insure success of research in the absence of continuity of effort.
I therefore respectfully recommend to this committee that steps be taken to provide funds for research on the causes, treatment, and cures of blinding eye diseases, in the manner outlined above.
OCTOBER 1, 1953. The abore statement is supplemented as follows:
Since writing the above, the number of research workers in ophthalmology as well as laboratory and clinical facilities designed for ophthalmic research has increased to some extent until now there are between 24 and 30 full-time research workers in the field and 2 or 3 additional laboratories and clinics. The increase has been brought about chiefly through funds provided by the National Institute for Neurological Diseases and Blindness of the United States Public Health Service.
Still the total effort made to prevent blindness is incommensurate to the needs. It seems to me imperative that the gains which have been made be preserved and that further expansion in ophthalmological research be undertaken. Respectfully submitted.
V. EVERETT KINSEY.
STATEMENT BY LAWRENCE J. LINCK, EXECUTIVE DIRECTOR, NATIONAL SOCIETY FOR
CRIPPLED CHILDREN AND ADULTS, INC. The National Society for Crippled Children and Adults, with headquarters at 11 South La Salle Street, Chicago, is a voluntary health and welfare agency, which has been serving the crippled for 32 years. Afiliated with the national society are 52 State and Territorial societies for crippled children and adults. These societies, together with 1,300 local affiliates throughout the country, carry out a 3-point program of care and treatment, education, and research. Care and treatment services are based upon study of community needs, available resources, and the programs of other private as well as public agencies. They are directed by voluntary boards of trustees and are staffed by professional personnel. _More than 800 services and facilities are owned and operated or conducted by Easter seal societies throughout the country, including diagnostic and evaluation clinics, outpatient treatment training centers, rehabilitation centers and curative workshops, itinerant therapy programs, residential facilities such as convalescent homes, speech programs, assistance to public school treatment units, and sheltered workshops and homebound employment programs.
This statement is submitted to the Wolverton committee with the hope that the long-term nationwide experience of the national society in serving the crippled may be helpful in the committee's exploration of needs in the field of neurological diseases and blindness.
CRIPPLED PERSONS SERVED During the year ending August 31, 1952, Easter seal societies cared for 101,000 persons, of whom 81 percent were children under the age of 21, and 19 percent were adults. These 101,000 individuals are classified under the following diagnostic categories : Orthopedic (other than cerebral palsy)
35, 000 Cerebral palsy
17, 000 Speech defective-
24, 000 Specific diagnostic conditions included in the broad category of orthopedic handicaps are residual crippling from poliomyelitis, multiple sclerosis, muscular dystrophy, arthritis, hemiplegia, paraplegia, amputations, congenital malformations, etc.
In the experience of the national society, the greatest university of need is represented by the cerebral palsied. Services required by the cerebral palsied cut across the entire field of health, welfare, and education, recreation, rehabilitation, and employment. This is reflected in the fact that while less than 20 percent of the total caseload were classified as cerebral palsied, 50 percent of the expendi. tures of the Easter seal societies nationwide for care and treatment services were for the cerebral palsied. In many areas, the percentage of persons served as well as the funds expended were much higher.
Total expenditures during the period ending August 31, 1953, were in excess of $8 million. Approximately $4,500,000 was for direct service to the crippled; $900,000 for professional, parent, and public educational services; over $300,000 for employment services; and the remainder for research, State and community organization, fund raising, and administration. A breakdown of specific sums expended for direct service and employment is as follows: Clinics and outpatient centers.
$941, 103. 42 Convalescent homes and hospital schools
504, 760. 81 Provision of aids and appliances-
156, 309. 67 Purchase of medical care..
167, 840.37 Rehabilitation centers.
506, 709. 17 Other medical care and therapy
1, 365, 425, 80 Social services--
230, 051. 35 Recreation and camping services..
502, 787. 04 Testing and counseling-
96, 279. 86 Sheltered workshop-
220, 071. 87 Other services..
93, 503. 81
KINDS OF SERVICES The National Society for Crippled Children and Adults has a responsibility to serve persons suffering from any type of crippling condition within the scope of its program, and for whom no other agency provides needed care and treatment. Therefore, in order to carry out this responsibility, the society strives to establish services and facilities which can and do meet the needs of persons with various kinds of disabilities.
Rehabilitation centers are examples of facilities which give comprehensive services to crippled persons suffering from various types of neurological conditions. Here under one roof we find a coordinating facility staffed and equipped to carry on a complete program of human adjustment from diagnosis to final employment. Since many of the medical and therapeutic techniques and the elaborate equipment used in the treatment of crippling conditions are quite similar, it is logical that the victim of cerebral palsy, poliomyelitis, multiple sclerosis, and other disorders all benefit from the services available in a rehabilitation center. It would be economically unfeasible, particularly in view of the extreme shortage of qualified professional personnel in the field of the therapies, to develop separate treatment fa lities for each of the diagnostic classifications. Much of the national society's recent activity has been devoted to the extension and development of community rehabilitation centers, both because of the great need that exists for this type of service and also because of their proven effectiveness in rendering maximum service in the most efficient manner.
The rehabilitation center supplements rather than supplants the physical medicine and rehabilitation services and programs of hospitals and other agencies within the community. Centers by themselves cannot meet the entire community need for rehabilitation services, but by their existence they enhance the quality and quantity of the work performed by other rehabilitation agencies which focus on special aspects of the entire problem.
Similarly, in considering the extent of the problem of crippling, the society is concerned with the overall picture. In view of the committee's interest in the field of neurological diseases, however, it may be particularly helpful to confine this statement to the problem of cerebral palsy with which the society has had long experience.
Incidence.—There are no complete statistical studies of surveys on the incidence and prevalence of cerebral palsy. The most scientific attempt is the recent countrywide survey of Schenectady County, N. Y., under auspices of the New York State Health Department. This study reported a prevalence of cerebral palsy of 590 per 100,000 population. This figure is somewhat higher than that previously reported by Dr. Winthrop M. Phelps, whose formula would give an estimated prevalence of 400 per 100,000 of population. For practical purposes, one may consider the incidence of cerebral palsy to be 1 in 200 births and its prevalence to be roughly 500 per 100,000 population. Taking into account that the death rate of persons with cerebral palsy is about 15 percent, or 4 times that of other children in the first 6 years of life, one could estimate that there would be between 250,000 and 300,000 cerebral palsied persons under the age of 21 in the United States.
Although the above estimates take into account that the death rate of children with cerebral palsy in the first 5 years of life is about 15 percent or about 4 times the usual mortality rate of children without cerebral palsy, it assumes that the death rate after this age is the same for both groups. This is not likely, for many patients with moderate or severe cases of cerebral palsy succumb more readily to the infirmities associated with aging than do those in the normal population.
Costs of medical and treatment service vary depending on the extent of the care received. Some examples will serve to illustrate just how costly treatment for the crippled actually is.
Hospitalization costs for a crippled child in the Middle West may average $20 a day.
The most costly form of service is the type provided in residential centers providing comprehensive services. The average per capita cost at the Illinois Children's Hospital School is now $6,000 per year.
Average monthly cost at a cerebral palsy treatment center which offers physical therapy, occupational therapy, speech therapy, and psychological and social services may vary from $250 to $750 per child.
An acute problem and one for which no satisfactory solution has been reached is that of the family which may at great sacrifice be able to pay for needed care and treatment of a severely handicapped cerebral palsied child, but which is unable to provide for the future care of that child in the event of the death of those immediately responsible. There is a dearth of custodial homes which would provide such care over a long-term period for individuals who cannot achieve successful independent living in the community. Our experience has shown that there is an acute need for residential and custodial facilities for severely disabled adults.
LOSS OF MANPOWER Of the 67.000 handicapped individuals rehabilitated by the Office of Vocational Rehabilitation during 1952, more than 48.000 were not employed at the time services began. Those employed were generally working at jobs which were unsafe, unsatisfactory, or temporary. Their combined earnings before rehabilitation amount to $16 million. After rehabilitation they were earning wages at the rate of $116 million a year. An estimated $10,400,000 in Federal income taxes will be paid by these persons annually. At this rate, it will take less than 3 years for these rehabilitated individuals to pay back into the Federal Treasury in income taxes alone the entire $21 million of Federal funds spent on their rehabilitation. Few investments pay such excellent dividends. Even if the costs of surgery, appliances, and other special expenses doubled, this would still represent a very high return on investment.
In testimony before a subcommittee of the Committee on Education and Labor of the House of Representatives, Mary Switzer, Director of the United States Office of Vocational Rehabilitation, stated :
“As a result of disability alone in 1952, $140 million was paid in aid to dependent children to 140,000 disabled breadwinners ; $ 100 million in general assistance which, as you know, is paid monthly from State and local funds, to 178,000 disabled people: $92 million paid under the new category of aid to the permanently and totally disabled to about 160,000 disabled ; and $63 million in payments to 98.000 blind persons under aid to the blind.
“That makes a total of nearly $400 million a year to meet the barest minimum needs of 815,000 men, women, and children, 370,000 of them dependent children. It gives us an insight into the cost of neglected physical disability."
1 Meyer A. Peristeln, M. D., president-elect of the American Academy for Cerebral Palsy in The Problem of Celebral Palsy Today (revised), to be published in the near future by the National Society for Crippled Children and Adults.
There are other benefits of rehabilitation besides the economic. The value of rehabilitation to these persons in terms of personal development and personal freedom is immeasurable. No one can place a value on ability to lift a spoon to feed oneself, or to walk across a room, and these are the things that rehabilitation has meant to many disabled persons. The increased ability of handicapped individuals for self-care and employment creates a beneficial effect on the morale of the individual's entire family, his community and society as a whole.
NEEDS IN PERSONNEL We know that the total funds which we have available are inadequate to perform the job at hand. The great need for additional trained personnel to perform these needed services has also made our task a difficult one. A survey of professional personnel employed by Easter Seal Societies made in May 1953 is illustrative of the acute personnel shortage. The survey showed that these societies employ 1,310 professional workers (including 644 full-time and 666 part-time workers). The societies have also 229 unfilled professional jobsin other words, there are vacancies equivalent to 17.5 percent of the professional force.
The societies were asked to estimate their professional personnel needs in 5 years. They anticipate needing an additional 998 persons, a net increase over May 1953 of 93.7 percent--almost a doubling of present professional personnel.
The greatest expansion is expected to be among those professional groups who directly serve the handicapped—the physical, occupational, and speech therapists, special teachers, social workers, and psychologists. Easter Seal Societies now employ 626 of these professional workers. Within 5 years, they hope to employ a total of 1,431, an increase of 128.6 percent.
In the Nation as a whole, this picture of present shortages and rapidly expanding additional needs for professional workers trained to work with the handicapped is equally true. For example, there are at present an estimated 5,000 registered physical therapists practicing, and there are 2,500 vacancies. Within 5 years, an additional 5,000 will be needed. To meet this need, a total of 8,000 must be trained (allowing for a 7 percent attrition rate). This requires an annual average of 1,600 graduates; in 1953 there were an estimated 624 graduates in physical therapy.
In the field of occupational therapy, there are about 3,600 registered therapists practicing and vacancies for 3,000 more. The current graduation rate of a little more than 600 per year cannot begin to meet present needs, much less the expanding future requirements.” Some of the reasons for these shortages are as follows:
1. Inadequate scholarship funds.
Research in the general area of neurological diseases will without question have bearing on all other crippling diseases and conditions of whatever kind. Conversely, research in the preventable factors in cerebral palsy, for example, is basic and not necessarily related to cerebral palsy per se, but rather to the entire field of medicine.
Our medical counselors advise us that research in cerebral palsy extends far beyond the field of cerebral palsy per se, and involves basic and clinical research in the whole broad field of medicine. It is concernd not only with the areas of diagnosis and therapy but also with prevention and social research. The estimate has been made that more than 10 percent of the cases of cerebral palsy now occurring might possibly be prevented by application of the knowledge we now have. In addition, there are research implications in the related fields of speech pathology, psychology, psychiatry, education, social welfare, and vocational guidance, testing, and placement. In all of these fields, further research would unquestionably yield results which ultimately would mean better lives for all of the crippled, including the cerebral-palsied, and would lift at