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Vocational Rehabilitation of the Mentally Retarded
Vocational Rehabilitation of the Mentally Retarded JULIUS S. COHEN, Ed.D."
In preparing an article on this subject for inclusion in a pediatric journal, one must consider the over-all role of medicine in the planning of comprehensive rehabilitation programs for the mentally retarded, and further, the specific contributions of pediatricians to the vocational area. It is the opinion of this author that both of these represent areas of major medical responsibilities, first primarily because of the role ascribed to the physician by society and second because decisions made in early life, often by or in consultation with pediatricians, will have a life-long effect on the retardate and will be directly related to his vocational development and rehabilitation. Diagnosis and Prevention The physician has a primary responsibility in prevention and early diagnosis of retardation and frequently is the first professional who observes retarded development. The more severely retarded the child, the earlier a diagnosis of retardation can be made. Thus the physician delivering the child might be aware of the youngster who is profoundly or severely retarded, and a diagnosis might be made during the postnatal period. For the moderately retarded youngster or the mildly retarded with some physical stigmas, an identification and diagnosis may be expected before the school years. These diagnoses usually are made by the physician. However, for most mildly retarded children, the diagnosis of retardation is more commonly based upon performance in the school setting and frequently does not have concomitant biomedical aspects. In such situations, the physician's role is not a central one and, in fact, the diagnosis of mental retardation may be unknown to the physician. A study of the incidence of suspected mental retardation conducted
" Associate Director for Development and Coordinator for Training, Institute for the Study of Mental Retardation, The University of Michigan, Ann Arbor, Michigan
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in Onondaga County, New York, in 1953 demonstrated another important factor. There were few cases reported in pre-school children, a sharp rise in incidence during the second or third year in school and again during the junior high school period, and then no cases reported throughout the county over age 17. One might speculate on the reasons for this absorption into the community, the implications for those involved in early identification and programming for the retarded, and the impact of labeling on the adult adjustment of such persons. In this regard, both physicians and educators are in key roles. One can only speculate on the impact of labeling when a person is treated in a certain way, according to the label, rather than as an individual. The impact on a child's life when he has been classified or categorized into some appropriate (or perhaps inappropriate) slot has been shown to be destructive. While there has been a strong emphasis in medicine on prevention, there has been a parallel emphasis in psychosocial, educational, and vocational areas. Studies of pre-school youngsters and evaluation of the Head Start program have demonstrated the effectiveness of early stimulation and enrichment in minimizing environmental impact on performance of children in schools. Such experiences could also "prevent" retardation from being manifest in a child. Despite this knowledge, it has been extremely difficult to develop and support programs at this level, and much of the emphasis remains on medical and dental examinations. Institutional Care Historically, institutions for the retarded in this country have been seen as extensions of medical care programs, often modeled on mental hospitals. Thus, it is not uncommon for a physician to be superintendent or director of a residential school for the mentally retarded. The author feels that an educational model would be more appropriate in such programs, especially where there is a large number of mildly retarded children. While there are medical care needs, the basic program should be educational, social, and vocational in nature, and the leadership for such programs should be assigned to professionals from those areas. A corollary of this administrative arrangement relates to commitment practices. In many states, it has been required that two physicians certify retardation in order to commit a child to a state school. It could be suggested that other professionals, such as psychologists, would be more qualified in this regard, especially in cases of mild retardation with an unknown etiology. A personal experience may illustrate this point. Several years ago the author had occasion to review the commitment papers of an 18-year-old boy who was a resident of a state school. The commitment papers included a question which asked the committing physicians what indications there were that the boy was retarded. One physician stated that the indication of retardation was that the boy was an illegitimate child. The second physician, somewhat more knowledge-
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able about retardation, cited the fact that he could not read. It must be noted that the boy, at the time of commitment, was not yet 6 years old. The actual situation was that he was a behavior problem in his home and community. Perhaps it was determined that institutionalization would provide a basis for controlling him, but for whatever reason, he was certified as mentally retarded and committed. After 12 years, his functioning was in the low-normal range of intelligence, and he had developed many behavior patterns which would militate against successful return to the community. It is difficult to estimate the cost of maintaining him in an institution for over 12 years, as well as the cost to the boy in terms of what he might have been able to achieve had he been provided with adequate services in the community. Perhaps profeSSionals from other disciplines would have committed him also, but in this instance, he was committed by medical personnel for nonmedical reasons. Definitions It is important to recognize that although the term mental retardation is being used as if it has a single meaning, the interpretation may vary from profession to profession. For example, an educational definition presented in a Children's Bureau Publication2 states: Mental retardation-like being near-sighted or hard of hearing-is a condition. It's not a disease and it is not always obvious. It has to do with the way a person's brain works-or doesn't work-and how that person's mental ability compares with that of everybody else. Just as people are of different physical sizes, so they have different mental abilities. Some persons are tall and some are short, some are bright and some not so bright. Then there are extremes. Physically, a few are noticeably much smaller than the average. Mentally, too, some are much less bright than the average.
In comparison, a medical definition presented by Dr. Howard Rusk14 emphasizes the physical aspects of the condition. Mental retardation is primarily a mental deficiency due to impaired brain development originating before or during birth or in early childhood. Mental retardation may be caused by anyone of a wide variety of diseases, accidents or genetic deviations. It may be related to many syndromes and toxic conditions as well as to environment.
GROWTH OF VOCATIONAL REHABILITATION
The field of vocational rehabilitation developed from a medical orientation of services for the physically disabled, but during the past decade it has developed strong ties into the educational system as patterns of service for the mentally retarded have evolved. The provision of vocational rehabilitation services for the mentally retarded has been
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a rather recent occurrence. Vocational rehabilitation had its start in legislation after World War I, wherein vocational training was made available to disabled veterans. These services were extended shortly thereafter to include physically disabled civilians also. Federal legislation, in 1942, permitted services to be provided to mentally retarded persons, but few of them ever received any services under that legislation. The vocational rehabilitation amendments of 1954 earmarked specific funds for services to the mentally retarded, and for the first time they started to receive services in some number. This provision of services has been expanded throughout the past 10 years, although the number of retarded who are clients of federal or state rehabilitation programs is still not large in comparison to the number of retarded persons in the population. This problem may stem from a number of factors. First the average age of retarded persons served in the rehabilitation programs is about 20, while the average physically disabled person is in his mid-thirties. This creates some problems when attempting to secure suitable placements for retarded clients. Secondly, the retarded person may be entering the world of work for the first time, with poorly developed work habits and attitudes and with limited work experiences. This client does not have a background of successful work experiences and may be seen as not employable. Third, the retarded person and his family may require extensive counseling, and the rehabilitation counselor may not have the time available. Moreover, the counselor may have had little training or experience with mentally retarded clients and may not feel prepared to work with them. A final point is the dearth of facilities to which a retarded person could be sent for training and related services. In some sections of the country, and especially in less developed or populated areas, there may not even be adequate secondary school programs. Nevertheless, tremendous strides have been made in services to this group, and the trend has been to serve more and more severely disabled persons. To implement this, the most recent vocational rehabilitation amendments in 1967 provide up to 18 months for evaluation to determine eligibility for services. This means that a retarded person can be included in a rehabilitation program for evaluative purposes for this extended period, a need that would exist primarily in cases of more severe impairment.
DEGREES OF RETARDATION
In attempting to categorize the capabilities of retarded persons, a classification established by Dr. Salvadore G. DiMichael appears to be a most helpful one. He divides the retarded into four sub-groups based
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upon their vocational potential. First is the directly placeable group. These are youngsters who, as adults, will be able to take care of themselves and will be able to do unskilled or semiskilled work. The school's special education program provides sufficient training to enable these people to enter the labor market and to secure employment in competitive jobs, directly from school. These are usually adequately adjusted and socially mature; they do not need the services of the state vocational rehabilitation service or other agencies. Employment usually is secured through family, friends, or an employment service. The second group is the deferred placeable group, composed of those who will also be able to take care of themselves and who have competitive work potential. However, for persons in this group, the basic special education program in the school is not sufficient to prepare them fully for adult roles in society and for jobs, so that some additional training is required. These additional experiences may include prevocational evaluation, prevocational training, personal adjustment training, on-thejob training, and formal vocational training, as well as related services as required from counselors, psychiatrists, and other professionals. These clients ultimately may be placed in competitive employment. From this group come most of the mentally retarded clients for rehabilitation. Persons in this group are much more like normal persons than different from them, and, while there may be concomitant physical problems, they usually are not extensive. Persons in the sheltered employable group may be able to take care of themselves, but require some type of supervised experience, either in terms of their employment or in terms of their social living. They are capable, after receiving services mentioned above, to maintain themselves, at least partially, within a carefully structured sheltered framework. They may secure employment in a sheltered workshop, or in a live-in situation where the social environment is also supervised. The fourth group, a self-care but not self-supporting group, includes those who may be able to take care of some of their activities of daily living, either in a home or in a residential setting. Although they may participate in activity programs, they are not capable of productive employment, even in a sheltered workshop. While they may be maintained at home, institutionalization is usually the final program phase for them. There is another way to consider the composition of the retarded group. For purposes of this consideration, a 3 per cent incidence figure will be used. Thus, in an unselected group of 1000 people, statistically there should be 30 retarded persons. Of these it would be expected that one would be in the fourth or self-care group, four in the third or sheltered employable group, and 25 in the deferred placeable or the directly placeable groups. Vocational rehabilitation and education programs are being designed to meet the needs of most retarded people and to enable them to assume meaningful roles in society.
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VOCATIONAL AND EDUCATIONAL PROGRAMS
There has been a significant growth of programs for the mentally retarded in many areas. There has been considerable advance in the use and development of work samples as a diagnostic aid in vocational evaluation. The work sample technique appears to have greater validity with this population than the more usual paper and pencil tests. Actual work experiences have been an adjunct to personal adjustment training programs; in these, the person is functioning in a real work situation, while the programatic emphasis is on his personal adjustment. In the area of counseling, there has been a great advance, with group counseling, situational counseling, and group psychotherapy techniques being utilized much more extensively. There also has been a significant extension of parental counseling activities. The newness of the developments in this area is emphasized by the fact that the first rehabilitation counselor training program in the United States with an emphasis on rehabilitation for the mentally retarded was established at Syracuse University in 1961. Experience with vocational rehabilitation programs for the mentally retarded has shown the extent to which mentally retarded persons are capable of living productive lives, marrying, and raising families with much the same problems as others in comparable socioeconomic levels. While many are placed in stereotyped jobs-domestic service, washing cars, or working in kitchens-many retarded persons are achieving notable successes in other areas. The 1967 report of the President's Committee on Mental Retardation indicates that there is a growing demand for trained mentally retarded workers, both in industry and government. About 3 years ago, civil service examination procedures, which formerly barred such workers from federal employment, were modified, and by the middle of 1957, over 3000 mentally retarded workers were employed by 39 different federal agencies. Since World War II, schools increasingly have assumed responsibility for the education of the mentally retarded. Characteristically, these programs were for the mildly retarded; more recently, legislation has encouraged programming for trainable mentally retarded in public school settings. The development of these public school programs followed a pattern of establishing primary classes first, and then intermediate classes. Generally the establishment of junior and senior high school classes came much later. Students were pushed through a vocational curriculum geared to their leaving school at about age 16 or 17. With the extension of the responsibility of the schools to program for mentally retarded children until age 21, there has been a change in the focus of the secondary programs. The over-all goals of the program for the educable remain those of providing educational services to enable the educable retardates to reach a level of social and emotional maturity whlch will permit them to participate in community life with a minimum
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of supervision, and will enable the trainable retardates to achieve ac-. ceptable social behavior, care for themselves, and perform useful work in a sheltered environment. These goals have been expressed through the development of work-study programs or cooperative programs between schools and rehabilitation agencies. There has been an increasing emphasis in educational programs to provide a more eHective preparation for the world of work for retarded persons as well as providing sheltered environments for transitional experiences toward their employment. Thus, many schools have established work experience programs within the framework of the schools as well as evaluation, on-the-job training, prevocational training, and personal adjustment training experiences in actual working settings in the community. Various patterns of school-work experiences have demonstrated their value, and work-study programs have multiplied rapidly. These are programs in which the student spends part of his time in school and the remainder of his time at work. The school activities are derived from the actual work experiences and seem to provide a much more meaningful experience to the students. This trend is in the direction of using work settings as realistically as possible for instructional purposes. The underlying rationale is that the retarded learn best in a real rather than in an abstract situation. Therefore it is not appropriate to teach them about work and adult living in the classroom, but rather in actual work settings. There are many problems here, one of which is that the role of the boss becomes confused with the role of the teacher. Nevertheless, there appears to be considerable hope in the continuing development of such programs. During the past decade, there has been considerable program support from the Rehabilitation Services Administration of the Social and Rehabilitation Services Agency. An emphasis of this support has been on demonstration and research projects designed to develop and evaluate techniques to rehabilitate persons previously regarded as too severely retarded for services. Extensive use of sheltered workshop programs has been most helpful in providing services to this group.
THE PLACE OF THE PHYSICIAN
The role of medicine must be considered against the background of these developments in education and vocational rehabilitation. It is the impression of the author that, to a considerable extent, the training of physicians in the field of mental retardation represents somewhat of a distortion of this field. Medical students are normally exposed to "clinical material" that includes patients with hydrocephaly, spina bifida, and various biochemical disorders, such as phenylketonuria, maple syrup urine disease, hyperglycinemia, Hartnup disease, and cystathioninuria.
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The pediatric neurologist demonstrates the relationship between mental retardation and motor and sensory disorders, seizures, cerebral palsy, and other conditions resulting from problems in the nervous system. Down's syndrome and the knowledge derived from karyotyping emphasizes the genetic aspects of some types of mental retardation and may introduce the young physician in training to aspects of parental counseling. All of this experience combined is concerned with only about 25 per cent of the retarded. There is little presented on the mildly retarded, educable child with few or no medical problems, and medical students do not develop an understanding of their supportive, but not central, role in these cases. It must be noted that there has been an increased emphasis on the problems relating directly to psychological, socioeconomic, environmental, and cultural factors. High-risk children from poverty areas provide a much higher incidence of physical disability and mental retardation than is found elsewhere in society, and they are a focus for medical attention. Such preventive services may result in a decrease in the incidence of mental retardation.' Family Counseling The role of the physician is important in case finding of children and, for adolescents and adults, in making appropriate referrals for vocational programming of mentally retarded persons. When the physician is aware of someone whose developmental pattern suggests retardation, it is important that, in addition to appropriate referrals to suitable programs, the family should be informed of programs that may be helpful in the future. The parents of young retarded children should be made aware of the existence of the state rehabilitation agency and how its programs may be used to serve the needs of their child at a later date. It is equally important that the entire family be involved in developing an appropriate plan for the retarded person. The physician can be the key professional to help bring this about. Utilizing available community resources, the parents may be better able to adjust to the retarded child and to program for him in the family and in the community. Institutionalization should be considered as the last resort, depending upon the ability of the family to make this adjustment. The utilization of community education and training facilities is to be recommended in many instances, and it is noteworthy that the cost to the society of such community-based services usually is much less than the cost of institutionalization. With the support and the cooperation of the retardate's family, rehabilitation is able to develop appropriate kinds of vocational training programs for the client in the community. It is important that the family know at the earliest possible time the prognosis for their child. This knowledge may help establish appropriate goals for him. Family adjustment as well as personality factors of the
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retarded are important considerations in planning for meaningful vocational rehabilitation goals. The physician has an important role in these matters. Physical Handicaps As a part of the total program, retardates who have physical handicapping conditions, which are visible secondary disabilities, can be identified easily for the necessary medical services. They present special problems which need to be overcome in order for them to be rehabilitated, and these needs are in areas in which the physician has characteristically functioned. A mentally retarded child who is blind, has epilepsy or cerebral palsy, is brain-injured, has a substantial communication problem, or has a congenital amputation will require physical restoration services. These services would have to be prescribed on an individual basis to substantially reduce such conditions before there could be a significant attack on the problems presented by the retardation. The situation is even more complex in children with invisible disabilities, whose behavior may be incorrectly attributed to mental retardation. Other secondary disabilities, such as deafness, epilepsy, or congenital heart malformations, are examples of this problem. The same would be true for emotionally disturbed retarded children. In all of these instances, the services of the physician would be required to provide the necessary treatment, after which a suitable rehabilitation program could be established. While some have argued that it would be more appropriate for the professional to apply his skills to children with normal or abovenormal intelligence who have these physical disabilities, it is the opinion of the author that such services should be made available to the retarded. The values, in terms of elevating the functioning of the child and the potential contribution of a working retardate to society, are such that there appears to be little justification in not providing extensive services in this area. Writing off the case and referring the child for institutionalization is not the answer.
PROGRAMS AND PROGRESS
Throughout the country, written plans for the provision of comprehensive services for the retarded have been developed for each state. Currently, vocational rehabilitation plans for all disabled persons are being developed for each state. As both of these plans are coordinated and become operational, there should be an improvement in the type, extent, and variety of rehabilitation services available to the mentally retarded. Since the passage of the vocational rehabilitation amendments of 1954, progress in rehabilitation of the retarded has been impressive.
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The requirement that a client fall within a particular I.Q. range is no longer followed, and opportunities are given to those who are functionally retarded as well as those whose I.Q.'s range down into the thirties. There has been a commitment to serve persons with limited capabilities who are capable of self support of a low or moderate amount. Even a limited degree of self support is viewed as being sufficient to justify extensive efforts on the part of rehabilitation personnel. There has been a great expansion of the numbers and kinds of personnel drawn into the mental retardation field and a growing emphasis on the ultimate potential of retarded persons within the society. Services for the retarded and the family have been provided and are available in greater variety than heretofore. Workshops, diagnostic facilities, domiciliaries, and other residential programs represent but a few of the developments to assist in maintaining the retarded person at the optimum level of functioning in his home community. Occupation and day activity centers are expanding, as are pre-school programs for the retarded and for the socially disabled. These programs are especially important for the latter group, as an enriched experience may preclude later placement in the mentally retarded classification. Perhaps a case report could highlight the potential for successful employment which can occur when selective placement of a retarded person with job capabilities is accomplished. Marie was employed as a receptionist in a physician's office. She was responsible for answering the telephone, making appointments, recording the doctor's notes on the master file for each patient, sterilizing the instruments, and keeping the office neat and clean. At the time of her placement, Marie's score on an individually administered test of intelligence was 67. Considering the data presented, one might suspect· that for some reason the test results were spuriously low. However a review of such tests administered routinely over the past 13 years reveals scores ranging from the mid 60's to the low 70's. The examiners were psychologists having considerable experience with the mentally retarded. Thus, the test results appear to be valid. It could then be hypothesized that Marie had a rich life which had enabled her to overcome the limitations suggested by the test results. A review in this area indicates that she had been institutionalized in a state school for the retarded before her fifth birthday. The question still faces the observer as to how she was able to function in this area, and is emphasized because Marie does not fit into the stereotype. Perhaps a closer examination of the employment situation and of Marie will resolve some of these questions. First she knew how to tell time and was aware of the regular office hours and the usual duration of each appointment. Maintaining appointments within this framework was relatively easy for her and she could check with the physician in the event of any unusual situations, requests, or problems. She was personable over the telephone and had had some switchboard experi-
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ence at the state residential school. Transcribing the notes to a master file was merely a matter of copying, an activity she was able to accomplish despite the reputedly unintelligible script used by many physicians. The office had a small autoclave and its automatic operation insured suitable controls for sterility. Dusting and straightening the office was no problem whatsoever. Marie had several characteristics in her favor. First she was an attractive girl. Secondly she was socially mature and able to deal with most adults easily. She refused to accept for herself the behaviors of many of the retarded girls with whom she resided, and this was evident both in her manner and in her appearance. She was meticulous about her clothing and in fact sewed well. She tended to relate much better to the staff of the institution than to other residents. She was able to capitalize on her vocational and personal strengths and made a good employee for the physician. Probably the most significant aspect of this case is that Marie's original placement was as a domestic, performing household duties for the same physician while his wife worked in the office. This office work was a responsibility that his wife did not particularly enjoy, and she slowly trained Marie to replace her. Marie was able to work up to this position and, when the level of her adjustment is considered, it is extremely difficult to justify the continuation of the application of the label of mentally retarded to her. It is important that professionals from all disciplines develop an understanding of the potential of retarded persons, so that appropriate vocational programs may be developed. These programs should help insure the optimal level of vocational and social functioning for each retardate.
REFERENCES 1. Appell, M. J., Williams, C. M., and Fishell, K. N.: Changes in attitudes of parents of retarded children effected through group counseling. Amer. J. Ment. Defic., 68:807-812, 1964. 2. Children's Bureau, Department of Health, Education and Welfare: The Child Who is Mentally Retarded. Washington, U. S. Government Printing Office, 1956. 8. Cohen, J. S.: Employer attitudes toward hiring mentally retarded individuals. Amer. J. Ment. Defic., 67:705-718, 1968. 4. DiMichael, S. G., ed.: New Vocational Pathways for the Mentally Retarded. Washington, American Personnel and Guidance Association, 1966. 5. Dybwad, G.: Rehabilitation for the adult retardate. Amer. J. Public Health, 51: 998-1004, 1961. 6. Fraenkel, W. A.: The Mentally Retarded and Their Vocational Rehabilitation-A Resource Handbook. New York, National Association for Retarded Children, 1961. 7. Heber, R., ed.: Special Problems in Vocational Rehabilitation of the Mentally Retarded. Washington, Vocational Rehabilitation Administration, 1968. 8. Jacobs, A., Weingold, J., and DuBrow, M.: The Sheltered Workshop: A Community Rehabilitation Resource for the Mentally Retarded. New York, New York State Association for Retarded Children, 1962.
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9. Kennedy, R. J.: Social adjustment of the mentally retarded. Rehabilitation Record, 3:15-18, 1962. 10. Kolstoe, O. P., and Frey, R. M.: A High School Work-Study Program for Mentally Sub-normal Students. Carbondale, Southern Illinois University Press, 1965. 11. Meyen, E. L.: Planning Community Service for the Mentally Retarded. Scranton, Pa., International Textbook Co., 1967. 12. Phelps, W. R.: Attitudes related to the employment of the mentally retarded. Amer. J. Ment. Defic., 69:575-585, 1965. 13. President's Committee on Employment of the Handicapped: Guide to Job Placement of the Mentally Retarded. Washington, U.S. Government Printing Office, 1963. 14. Rusk, H. A.: Aid for the retarded. Reprinted from The New York Times. New York, National Association for Retarded Children, 1958. 15. Stahlecker, L. V.: Occupational Information for the Mentally Retarded. Springfield, Ill., Charles C Thomas, 1967. 611 Church Street Ann Arbor, Michigan 48104
In preparing an article on this subject for inclusion in a pediatric journal, one must consider the over-all role of medicine in the planning of comprehensive rehabilitation programs for the mentally retarded, and further, the specific contributions of pediatricians to the vocational area. It is the opinion of this author that both of these represent areas of major medical responsibilities, first primarily because of the role ascribed to the physician by society and second because decisions made in early life, often by or in consultation with pediatricians, will have a life-long effect on the retardate and will be directly related to his vocational development and rehabilitation. Diagnosis and Prevention The physician has a primary responsibility in prevention and early diagnosis of retardation and frequently is the first professional who observes retarded development. The more severely retarded the child, the earlier a diagnosis of retardation can be made. Thus the physician delivering the child might be aware of the youngster who is profoundly or severely retarded, and a diagnosis might be made during the postnatal period. For the moderately retarded youngster or the mildly retarded with some physical stigmas, an identification and diagnosis may be expected before the school years. These diagnoses usually are made by the physician. However, for most mildly retarded children, the diagnosis of retardation is more commonly based upon performance in the school setting and frequently does not have concomitant biomedical aspects. In such situations, the physician's role is not a central one and, in fact, the diagnosis of mental retardation may be unknown to the physician. A study of the incidence of suspected mental retardation conducted
" Associate Director for Development and Coordinator for Training, Institute for the Study of Mental Retardation, The University of Michigan, Ann Arbor, Michigan
Pediatric Clinics of North America-Vol. 15, No.4, November, 1968
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in Onondaga County, New York, in 1953 demonstrated another important factor. There were few cases reported in pre-school children, a sharp rise in incidence during the second or third year in school and again during the junior high school period, and then no cases reported throughout the county over age 17. One might speculate on the reasons for this absorption into the community, the implications for those involved in early identification and programming for the retarded, and the impact of labeling on the adult adjustment of such persons. In this regard, both physicians and educators are in key roles. One can only speculate on the impact of labeling when a person is treated in a certain way, according to the label, rather than as an individual. The impact on a child's life when he has been classified or categorized into some appropriate (or perhaps inappropriate) slot has been shown to be destructive. While there has been a strong emphasis in medicine on prevention, there has been a parallel emphasis in psychosocial, educational, and vocational areas. Studies of pre-school youngsters and evaluation of the Head Start program have demonstrated the effectiveness of early stimulation and enrichment in minimizing environmental impact on performance of children in schools. Such experiences could also "prevent" retardation from being manifest in a child. Despite this knowledge, it has been extremely difficult to develop and support programs at this level, and much of the emphasis remains on medical and dental examinations. Institutional Care Historically, institutions for the retarded in this country have been seen as extensions of medical care programs, often modeled on mental hospitals. Thus, it is not uncommon for a physician to be superintendent or director of a residential school for the mentally retarded. The author feels that an educational model would be more appropriate in such programs, especially where there is a large number of mildly retarded children. While there are medical care needs, the basic program should be educational, social, and vocational in nature, and the leadership for such programs should be assigned to professionals from those areas. A corollary of this administrative arrangement relates to commitment practices. In many states, it has been required that two physicians certify retardation in order to commit a child to a state school. It could be suggested that other professionals, such as psychologists, would be more qualified in this regard, especially in cases of mild retardation with an unknown etiology. A personal experience may illustrate this point. Several years ago the author had occasion to review the commitment papers of an 18-year-old boy who was a resident of a state school. The commitment papers included a question which asked the committing physicians what indications there were that the boy was retarded. One physician stated that the indication of retardation was that the boy was an illegitimate child. The second physician, somewhat more knowledge-
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able about retardation, cited the fact that he could not read. It must be noted that the boy, at the time of commitment, was not yet 6 years old. The actual situation was that he was a behavior problem in his home and community. Perhaps it was determined that institutionalization would provide a basis for controlling him, but for whatever reason, he was certified as mentally retarded and committed. After 12 years, his functioning was in the low-normal range of intelligence, and he had developed many behavior patterns which would militate against successful return to the community. It is difficult to estimate the cost of maintaining him in an institution for over 12 years, as well as the cost to the boy in terms of what he might have been able to achieve had he been provided with adequate services in the community. Perhaps profeSSionals from other disciplines would have committed him also, but in this instance, he was committed by medical personnel for nonmedical reasons. Definitions It is important to recognize that although the term mental retardation is being used as if it has a single meaning, the interpretation may vary from profession to profession. For example, an educational definition presented in a Children's Bureau Publication2 states: Mental retardation-like being near-sighted or hard of hearing-is a condition. It's not a disease and it is not always obvious. It has to do with the way a person's brain works-or doesn't work-and how that person's mental ability compares with that of everybody else. Just as people are of different physical sizes, so they have different mental abilities. Some persons are tall and some are short, some are bright and some not so bright. Then there are extremes. Physically, a few are noticeably much smaller than the average. Mentally, too, some are much less bright than the average.
In comparison, a medical definition presented by Dr. Howard Rusk14 emphasizes the physical aspects of the condition. Mental retardation is primarily a mental deficiency due to impaired brain development originating before or during birth or in early childhood. Mental retardation may be caused by anyone of a wide variety of diseases, accidents or genetic deviations. It may be related to many syndromes and toxic conditions as well as to environment.
GROWTH OF VOCATIONAL REHABILITATION
The field of vocational rehabilitation developed from a medical orientation of services for the physically disabled, but during the past decade it has developed strong ties into the educational system as patterns of service for the mentally retarded have evolved. The provision of vocational rehabilitation services for the mentally retarded has been
JULIUS
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a rather recent occurrence. Vocational rehabilitation had its start in legislation after World War I, wherein vocational training was made available to disabled veterans. These services were extended shortly thereafter to include physically disabled civilians also. Federal legislation, in 1942, permitted services to be provided to mentally retarded persons, but few of them ever received any services under that legislation. The vocational rehabilitation amendments of 1954 earmarked specific funds for services to the mentally retarded, and for the first time they started to receive services in some number. This provision of services has been expanded throughout the past 10 years, although the number of retarded who are clients of federal or state rehabilitation programs is still not large in comparison to the number of retarded persons in the population. This problem may stem from a number of factors. First the average age of retarded persons served in the rehabilitation programs is about 20, while the average physically disabled person is in his mid-thirties. This creates some problems when attempting to secure suitable placements for retarded clients. Secondly, the retarded person may be entering the world of work for the first time, with poorly developed work habits and attitudes and with limited work experiences. This client does not have a background of successful work experiences and may be seen as not employable. Third, the retarded person and his family may require extensive counseling, and the rehabilitation counselor may not have the time available. Moreover, the counselor may have had little training or experience with mentally retarded clients and may not feel prepared to work with them. A final point is the dearth of facilities to which a retarded person could be sent for training and related services. In some sections of the country, and especially in less developed or populated areas, there may not even be adequate secondary school programs. Nevertheless, tremendous strides have been made in services to this group, and the trend has been to serve more and more severely disabled persons. To implement this, the most recent vocational rehabilitation amendments in 1967 provide up to 18 months for evaluation to determine eligibility for services. This means that a retarded person can be included in a rehabilitation program for evaluative purposes for this extended period, a need that would exist primarily in cases of more severe impairment.
DEGREES OF RETARDATION
In attempting to categorize the capabilities of retarded persons, a classification established by Dr. Salvadore G. DiMichael appears to be a most helpful one. He divides the retarded into four sub-groups based
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upon their vocational potential. First is the directly placeable group. These are youngsters who, as adults, will be able to take care of themselves and will be able to do unskilled or semiskilled work. The school's special education program provides sufficient training to enable these people to enter the labor market and to secure employment in competitive jobs, directly from school. These are usually adequately adjusted and socially mature; they do not need the services of the state vocational rehabilitation service or other agencies. Employment usually is secured through family, friends, or an employment service. The second group is the deferred placeable group, composed of those who will also be able to take care of themselves and who have competitive work potential. However, for persons in this group, the basic special education program in the school is not sufficient to prepare them fully for adult roles in society and for jobs, so that some additional training is required. These additional experiences may include prevocational evaluation, prevocational training, personal adjustment training, on-thejob training, and formal vocational training, as well as related services as required from counselors, psychiatrists, and other professionals. These clients ultimately may be placed in competitive employment. From this group come most of the mentally retarded clients for rehabilitation. Persons in this group are much more like normal persons than different from them, and, while there may be concomitant physical problems, they usually are not extensive. Persons in the sheltered employable group may be able to take care of themselves, but require some type of supervised experience, either in terms of their employment or in terms of their social living. They are capable, after receiving services mentioned above, to maintain themselves, at least partially, within a carefully structured sheltered framework. They may secure employment in a sheltered workshop, or in a live-in situation where the social environment is also supervised. The fourth group, a self-care but not self-supporting group, includes those who may be able to take care of some of their activities of daily living, either in a home or in a residential setting. Although they may participate in activity programs, they are not capable of productive employment, even in a sheltered workshop. While they may be maintained at home, institutionalization is usually the final program phase for them. There is another way to consider the composition of the retarded group. For purposes of this consideration, a 3 per cent incidence figure will be used. Thus, in an unselected group of 1000 people, statistically there should be 30 retarded persons. Of these it would be expected that one would be in the fourth or self-care group, four in the third or sheltered employable group, and 25 in the deferred placeable or the directly placeable groups. Vocational rehabilitation and education programs are being designed to meet the needs of most retarded people and to enable them to assume meaningful roles in society.
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VOCATIONAL AND EDUCATIONAL PROGRAMS
There has been a significant growth of programs for the mentally retarded in many areas. There has been considerable advance in the use and development of work samples as a diagnostic aid in vocational evaluation. The work sample technique appears to have greater validity with this population than the more usual paper and pencil tests. Actual work experiences have been an adjunct to personal adjustment training programs; in these, the person is functioning in a real work situation, while the programatic emphasis is on his personal adjustment. In the area of counseling, there has been a great advance, with group counseling, situational counseling, and group psychotherapy techniques being utilized much more extensively. There also has been a significant extension of parental counseling activities. The newness of the developments in this area is emphasized by the fact that the first rehabilitation counselor training program in the United States with an emphasis on rehabilitation for the mentally retarded was established at Syracuse University in 1961. Experience with vocational rehabilitation programs for the mentally retarded has shown the extent to which mentally retarded persons are capable of living productive lives, marrying, and raising families with much the same problems as others in comparable socioeconomic levels. While many are placed in stereotyped jobs-domestic service, washing cars, or working in kitchens-many retarded persons are achieving notable successes in other areas. The 1967 report of the President's Committee on Mental Retardation indicates that there is a growing demand for trained mentally retarded workers, both in industry and government. About 3 years ago, civil service examination procedures, which formerly barred such workers from federal employment, were modified, and by the middle of 1957, over 3000 mentally retarded workers were employed by 39 different federal agencies. Since World War II, schools increasingly have assumed responsibility for the education of the mentally retarded. Characteristically, these programs were for the mildly retarded; more recently, legislation has encouraged programming for trainable mentally retarded in public school settings. The development of these public school programs followed a pattern of establishing primary classes first, and then intermediate classes. Generally the establishment of junior and senior high school classes came much later. Students were pushed through a vocational curriculum geared to their leaving school at about age 16 or 17. With the extension of the responsibility of the schools to program for mentally retarded children until age 21, there has been a change in the focus of the secondary programs. The over-all goals of the program for the educable remain those of providing educational services to enable the educable retardates to reach a level of social and emotional maturity whlch will permit them to participate in community life with a minimum
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of supervision, and will enable the trainable retardates to achieve ac-. ceptable social behavior, care for themselves, and perform useful work in a sheltered environment. These goals have been expressed through the development of work-study programs or cooperative programs between schools and rehabilitation agencies. There has been an increasing emphasis in educational programs to provide a more eHective preparation for the world of work for retarded persons as well as providing sheltered environments for transitional experiences toward their employment. Thus, many schools have established work experience programs within the framework of the schools as well as evaluation, on-the-job training, prevocational training, and personal adjustment training experiences in actual working settings in the community. Various patterns of school-work experiences have demonstrated their value, and work-study programs have multiplied rapidly. These are programs in which the student spends part of his time in school and the remainder of his time at work. The school activities are derived from the actual work experiences and seem to provide a much more meaningful experience to the students. This trend is in the direction of using work settings as realistically as possible for instructional purposes. The underlying rationale is that the retarded learn best in a real rather than in an abstract situation. Therefore it is not appropriate to teach them about work and adult living in the classroom, but rather in actual work settings. There are many problems here, one of which is that the role of the boss becomes confused with the role of the teacher. Nevertheless, there appears to be considerable hope in the continuing development of such programs. During the past decade, there has been considerable program support from the Rehabilitation Services Administration of the Social and Rehabilitation Services Agency. An emphasis of this support has been on demonstration and research projects designed to develop and evaluate techniques to rehabilitate persons previously regarded as too severely retarded for services. Extensive use of sheltered workshop programs has been most helpful in providing services to this group.
THE PLACE OF THE PHYSICIAN
The role of medicine must be considered against the background of these developments in education and vocational rehabilitation. It is the impression of the author that, to a considerable extent, the training of physicians in the field of mental retardation represents somewhat of a distortion of this field. Medical students are normally exposed to "clinical material" that includes patients with hydrocephaly, spina bifida, and various biochemical disorders, such as phenylketonuria, maple syrup urine disease, hyperglycinemia, Hartnup disease, and cystathioninuria.
1024
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The pediatric neurologist demonstrates the relationship between mental retardation and motor and sensory disorders, seizures, cerebral palsy, and other conditions resulting from problems in the nervous system. Down's syndrome and the knowledge derived from karyotyping emphasizes the genetic aspects of some types of mental retardation and may introduce the young physician in training to aspects of parental counseling. All of this experience combined is concerned with only about 25 per cent of the retarded. There is little presented on the mildly retarded, educable child with few or no medical problems, and medical students do not develop an understanding of their supportive, but not central, role in these cases. It must be noted that there has been an increased emphasis on the problems relating directly to psychological, socioeconomic, environmental, and cultural factors. High-risk children from poverty areas provide a much higher incidence of physical disability and mental retardation than is found elsewhere in society, and they are a focus for medical attention. Such preventive services may result in a decrease in the incidence of mental retardation.' Family Counseling The role of the physician is important in case finding of children and, for adolescents and adults, in making appropriate referrals for vocational programming of mentally retarded persons. When the physician is aware of someone whose developmental pattern suggests retardation, it is important that, in addition to appropriate referrals to suitable programs, the family should be informed of programs that may be helpful in the future. The parents of young retarded children should be made aware of the existence of the state rehabilitation agency and how its programs may be used to serve the needs of their child at a later date. It is equally important that the entire family be involved in developing an appropriate plan for the retarded person. The physician can be the key professional to help bring this about. Utilizing available community resources, the parents may be better able to adjust to the retarded child and to program for him in the family and in the community. Institutionalization should be considered as the last resort, depending upon the ability of the family to make this adjustment. The utilization of community education and training facilities is to be recommended in many instances, and it is noteworthy that the cost to the society of such community-based services usually is much less than the cost of institutionalization. With the support and the cooperation of the retardate's family, rehabilitation is able to develop appropriate kinds of vocational training programs for the client in the community. It is important that the family know at the earliest possible time the prognosis for their child. This knowledge may help establish appropriate goals for him. Family adjustment as well as personality factors of the
VOCATIONAL REHABILITATION OF THE MENTALLY RETARDED
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retarded are important considerations in planning for meaningful vocational rehabilitation goals. The physician has an important role in these matters. Physical Handicaps As a part of the total program, retardates who have physical handicapping conditions, which are visible secondary disabilities, can be identified easily for the necessary medical services. They present special problems which need to be overcome in order for them to be rehabilitated, and these needs are in areas in which the physician has characteristically functioned. A mentally retarded child who is blind, has epilepsy or cerebral palsy, is brain-injured, has a substantial communication problem, or has a congenital amputation will require physical restoration services. These services would have to be prescribed on an individual basis to substantially reduce such conditions before there could be a significant attack on the problems presented by the retardation. The situation is even more complex in children with invisible disabilities, whose behavior may be incorrectly attributed to mental retardation. Other secondary disabilities, such as deafness, epilepsy, or congenital heart malformations, are examples of this problem. The same would be true for emotionally disturbed retarded children. In all of these instances, the services of the physician would be required to provide the necessary treatment, after which a suitable rehabilitation program could be established. While some have argued that it would be more appropriate for the professional to apply his skills to children with normal or abovenormal intelligence who have these physical disabilities, it is the opinion of the author that such services should be made available to the retarded. The values, in terms of elevating the functioning of the child and the potential contribution of a working retardate to society, are such that there appears to be little justification in not providing extensive services in this area. Writing off the case and referring the child for institutionalization is not the answer.
PROGRAMS AND PROGRESS
Throughout the country, written plans for the provision of comprehensive services for the retarded have been developed for each state. Currently, vocational rehabilitation plans for all disabled persons are being developed for each state. As both of these plans are coordinated and become operational, there should be an improvement in the type, extent, and variety of rehabilitation services available to the mentally retarded. Since the passage of the vocational rehabilitation amendments of 1954, progress in rehabilitation of the retarded has been impressive.
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The requirement that a client fall within a particular I.Q. range is no longer followed, and opportunities are given to those who are functionally retarded as well as those whose I.Q.'s range down into the thirties. There has been a commitment to serve persons with limited capabilities who are capable of self support of a low or moderate amount. Even a limited degree of self support is viewed as being sufficient to justify extensive efforts on the part of rehabilitation personnel. There has been a great expansion of the numbers and kinds of personnel drawn into the mental retardation field and a growing emphasis on the ultimate potential of retarded persons within the society. Services for the retarded and the family have been provided and are available in greater variety than heretofore. Workshops, diagnostic facilities, domiciliaries, and other residential programs represent but a few of the developments to assist in maintaining the retarded person at the optimum level of functioning in his home community. Occupation and day activity centers are expanding, as are pre-school programs for the retarded and for the socially disabled. These programs are especially important for the latter group, as an enriched experience may preclude later placement in the mentally retarded classification. Perhaps a case report could highlight the potential for successful employment which can occur when selective placement of a retarded person with job capabilities is accomplished. Marie was employed as a receptionist in a physician's office. She was responsible for answering the telephone, making appointments, recording the doctor's notes on the master file for each patient, sterilizing the instruments, and keeping the office neat and clean. At the time of her placement, Marie's score on an individually administered test of intelligence was 67. Considering the data presented, one might suspect· that for some reason the test results were spuriously low. However a review of such tests administered routinely over the past 13 years reveals scores ranging from the mid 60's to the low 70's. The examiners were psychologists having considerable experience with the mentally retarded. Thus, the test results appear to be valid. It could then be hypothesized that Marie had a rich life which had enabled her to overcome the limitations suggested by the test results. A review in this area indicates that she had been institutionalized in a state school for the retarded before her fifth birthday. The question still faces the observer as to how she was able to function in this area, and is emphasized because Marie does not fit into the stereotype. Perhaps a closer examination of the employment situation and of Marie will resolve some of these questions. First she knew how to tell time and was aware of the regular office hours and the usual duration of each appointment. Maintaining appointments within this framework was relatively easy for her and she could check with the physician in the event of any unusual situations, requests, or problems. She was personable over the telephone and had had some switchboard experi-
VOCATIONAL REHABILITATION OF THE MENTALLY RETARDED
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ence at the state residential school. Transcribing the notes to a master file was merely a matter of copying, an activity she was able to accomplish despite the reputedly unintelligible script used by many physicians. The office had a small autoclave and its automatic operation insured suitable controls for sterility. Dusting and straightening the office was no problem whatsoever. Marie had several characteristics in her favor. First she was an attractive girl. Secondly she was socially mature and able to deal with most adults easily. She refused to accept for herself the behaviors of many of the retarded girls with whom she resided, and this was evident both in her manner and in her appearance. She was meticulous about her clothing and in fact sewed well. She tended to relate much better to the staff of the institution than to other residents. She was able to capitalize on her vocational and personal strengths and made a good employee for the physician. Probably the most significant aspect of this case is that Marie's original placement was as a domestic, performing household duties for the same physician while his wife worked in the office. This office work was a responsibility that his wife did not particularly enjoy, and she slowly trained Marie to replace her. Marie was able to work up to this position and, when the level of her adjustment is considered, it is extremely difficult to justify the continuation of the application of the label of mentally retarded to her. It is important that professionals from all disciplines develop an understanding of the potential of retarded persons, so that appropriate vocational programs may be developed. These programs should help insure the optimal level of vocational and social functioning for each retardate.
REFERENCES 1. Appell, M. J., Williams, C. M., and Fishell, K. N.: Changes in attitudes of parents of retarded children effected through group counseling. Amer. J. Ment. Defic., 68:807-812, 1964. 2. Children's Bureau, Department of Health, Education and Welfare: The Child Who is Mentally Retarded. Washington, U. S. Government Printing Office, 1956. 8. Cohen, J. S.: Employer attitudes toward hiring mentally retarded individuals. Amer. J. Ment. Defic., 67:705-718, 1968. 4. DiMichael, S. G., ed.: New Vocational Pathways for the Mentally Retarded. Washington, American Personnel and Guidance Association, 1966. 5. Dybwad, G.: Rehabilitation for the adult retardate. Amer. J. Public Health, 51: 998-1004, 1961. 6. Fraenkel, W. A.: The Mentally Retarded and Their Vocational Rehabilitation-A Resource Handbook. New York, National Association for Retarded Children, 1961. 7. Heber, R., ed.: Special Problems in Vocational Rehabilitation of the Mentally Retarded. Washington, Vocational Rehabilitation Administration, 1968. 8. Jacobs, A., Weingold, J., and DuBrow, M.: The Sheltered Workshop: A Community Rehabilitation Resource for the Mentally Retarded. New York, New York State Association for Retarded Children, 1962.
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9. Kennedy, R. J.: Social adjustment of the mentally retarded. Rehabilitation Record, 3:15-18, 1962. 10. Kolstoe, O. P., and Frey, R. M.: A High School Work-Study Program for Mentally Sub-normal Students. Carbondale, Southern Illinois University Press, 1965. 11. Meyen, E. L.: Planning Community Service for the Mentally Retarded. Scranton, Pa., International Textbook Co., 1967. 12. Phelps, W. R.: Attitudes related to the employment of the mentally retarded. Amer. J. Ment. Defic., 69:575-585, 1965. 13. President's Committee on Employment of the Handicapped: Guide to Job Placement of the Mentally Retarded. Washington, U.S. Government Printing Office, 1963. 14. Rusk, H. A.: Aid for the retarded. Reprinted from The New York Times. New York, National Association for Retarded Children, 1958. 15. Stahlecker, L. V.: Occupational Information for the Mentally Retarded. Springfield, Ill., Charles C Thomas, 1967. 611 Church Street Ann Arbor, Michigan 48104