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Implications for the Future
Implications for the Future HERBERT
J.
GROSSMAN, M.D. '*
A review of these essays underscores the multidisciplinary approach, the complex knowledge, and the array of services required to meet the needs of retarded persons. It is evident that this segment of our society will grow with the expansion of our total population and with the increasingly higher rate of survival among the retarded. We must seek ways to utilize our present knowledge more concisely, increase the efficiency of existing services, and search for new and better methods and techniques, if we are to cope with the complex problems of these handicapped persons. THE RESIDENTIAL FACILITY
One of the major trends will be continued changes in the concepts and utilization of the residential facility. A small core of persons, especially the profoundly retarded, will require almost life-long placement, but they will be only a small percentage of the mentally retarded population. We shall continue to see placement at times of stress in the family situation. The increased institutionalization in the over-40 age group probably reflects the illness or death of parents of the retarded, with a concomitant failure of the community to provide alternatives to such placement. Additional ways of caring for these retarded persons will be a giant step forward in our concept of care for the retarded. In the future, institutions will be used more selectively, more flexibly, and as part of the spectrum of community services, rather than as isolated self-contained terminal resolutions of the problem of what to "do with" the retardate. COMMUNITY SERVICES
This shift away from permanent institutional care will result in a
'* Professor
of Pediatrics, University of Illinois College of Medicine; Director, Illinois State Pediatric Institute, Chicago, Illinois
Pediatric Clinics of North America-Vol. 15. No.4 .. November, 1968
1041
1042
HERBERT
J.
GROSSMAN
greater demand for all community services: medical facilities (including child guidance clinics), special education, vocational training, and social services. To be of value, these services must be readily available to all who need them. This implies that the generic agencies must enlarge the scope of their clientele and expand their services to include the mentally handicapped. The person suffering from the handicap of mental deficiency is much more like the "normal" man than he is different from him. Too often generic agencies have excluded the retarded from their services, losing sight of the fact that the retarded person and his family have needs common to all people. The need to provide services for the retarded has resulted in the establishment of many special services. Such facilities will never be able to handle the volume of service, nor are they necessarily the best way to cope with the problems. Generic agencies, including family service agencies and psychiatric facilities, must assume their proper responsibility for the retarded segment of the population. In addition to the services provided by generic agencies, provisions for special education, and vocational training, there are certain ancillary services which will be necessary if the retardate is to function in the community. Recreational programs should expand to include the retarded person and other handicapped people. Social services, including case work and crisis intervention, should be available for the retardate and for his family. "Baby-sitters" for the older mentally retarded, vacation care, and emergency foster home care can do much to alleviate the stress of continuing care. It has been repeatedly demonstrated that parents can and will do a great deal toward maintaining the retarded child or adult in the community if proper resources are available to them. Even in coping with the severely or profoundly retarded child or those with severe behavioral difficulties, parents can function if temporary relief is available. Interim assistance such as vacation care for the retarded person may mean the difference between continued home care and institutional placement.
THE MILDLY RETARDED
The mildly retarded will receive much more attention in the future. Constituting the largest percentage of the retarded population, the mildly retarded fall into two distinct categories. The privately practicing physician is likely to see the mildly retarded child from a highly educated middle class family, concerned very early about the child's slow development. The much larger segment of the mildly retarded come from economically and culturally impoverished families and often are not identified until they are well into the school-age years. The practicing physician usually does not see these patients in his private office. Many,
IMPLICATIONS FOR THE FurURE
1043
however, are seen in public clinics with a variety of somatic complaints and school difficulties. Through early intervention, programs such as Head Start attempt to prevent or ameliorate the florid manifestations of adaptive failure. Methods to recognize these problems and identify these high-risk children earlier, and programs to deal with this phenomenon more effectively, will need to be developed.
THE RETARDED ADULT It is apparent that in the future many more mentally retarded children will grow up and remain as adults living in the community. Many can function adequately if appropriate resources and supportive help are made available. Institutional placement of young adults is usually the result of social or behavioral difficulties, rather than intellectual deficiency. It has been amply demonstrated that the adjustment of the retarded adult in the community is more dependent upon his adaptive behavior than his intellectual capacity. In view of the probability that many retarded adults will remain permanently in the community, we must devote more efforts to helping them acquire the skills necessary to cope with everyday living. Adequate training in numbers and number concepts has been too long neglected. The ability to tell time, make change, and read addresses can often determine one's employment capacity. Being able to cope with an application form without panic and to ask for help when necessary is crucial in many situations. In addition, attributes such as punctuality, work habits, and personal grooming are not specifically related to intellectual capacity. Appropriate attitudes can be learned and encouraged. Program planning must incorporate more training for life situations. While some of these retarded adults will be able to function so well that they will "blend in" with the general population and therefore no longer be labeled as retarded, most of them will need special help throughout their lives. With appropriate assistance, however, many will be able to maintain themselves. It has already been demonstrated that many mentally retarded persons can work effectively with adequate job stability. Both the federal government and private industry have made strides in utilizing these people. We are dealing here with a paradoxical problem. On the one hand, with an extremely complex and technical society, the expectations from manpower become greater and greater. On the other hand, manpower shortages in certain trades and service occupations are critical. It is apparent that there are many tasks which might be better performed by the mentally retarded. We need further studies of job requirements and individual capacities in order to provide necessary manpower and meet the needs of the mentally retarded for meaningful, productive employment.
1044
HERBERT
J.
GROSSMAN
Another and growing phenomenon of mentally retarded adults in the community will be marriage and procreation. Sterilization laws are being repealed. More and more mentally retarded persons will marry and many will have children. The whole area of sex education for the mentally retarded will need to be re-examined. This will require not only an assessment of methodology, but also a re-evaluation of our mores in regard to sexual conduct and procreation by the retarded. Birth control will require careful and thoughtful study. Our knowledge of genetics will have to be applied to the over-all problem of population control. Some mentally retarded persons are simply incapable of functioning effectively as parents. Many of the less severely handicapped are aware of their limitations in this area of parental responsibility. Moreover, the stigma of sterilization is often intolerable to the retardate's self-concept. The availability of simple and effective contraceptives is imperative for these people. A further consideration will be the growing number of the older mentally retarded in the community. The retarded adult living at home usually faces a major crisis when his parents die or are no longer able to care for him. Society has a stake in resolving this crisis satisfactorily. We can ill afford the tremendous investment in time, effort, and energy in training and helping these people to function effectively in the community, only to "dump" them into institutions when parents cannot provide an adequate home. The greatest fear of parents of the retarded is their concern, "What will happen to my child when I am gone?" We must institute alternatives to institutionalization which will provide care and support with dignity. Substitute care such as foster home placement, community living with cottage parents as supervisors, and programs of partial institutional living, day or night, have already demonstrated their effectiveness.
FURTHER AVENUES FOR INVESTIGATION
Future research will include a continuation of investigations into the biological aspects of retardation, especially in the fields of cytogenetics and biochemistry. Hopefully, new areas of treatment will evolve. Demographic studies which more accurately reHect and define the adaptive capacities of the mentally retarded will aid in assessing the total problem. In psychology we hope that studies will emerge of the mentally retarded as individuals. We need to define qualitative as well as quantitative differences between the retarded and the "normal" elements of our population. Differences and variation in the internal organizations of the mentally retarded child need considerable delineation. Rates of maturation, ultimate levels of functioning, cognitive development, all are vital areas for further investigation. Perhaps if these factors could be more
IMPLICATIONS FOR THE
FUTURE
1045
clearly defined, we might utilize the information in devising more efficient and effective educational procedures. The problems relating to the self concept of the mentally retarded person should receive careful and thoughtful consideration, for this self-concept is the foundation for the adaptive behavior that ultimately determines success or failure in society.
THE PRIMARY PHYSICIAN
Implicit in the foregoing comments is the conviction of the importance of the primary physician in relation to the mentally retarded in our population. The development in recent years of diagnostic clinics, special education, and service facilities does not dilute the responsibility of the family doctor; they only provide additional tools to help make his efforts more effective. He is in the best position to identify the problem and initiate services for the mentally retarded child early in life. As the child matures and develops, the physician's role in dealing with the patient and family can grow and deepen to meet more complicated needs. He is the professional person uniquely situated to serve as a focal resource at times of stress, to aid and counsel the parents in planning, decisions, and social management. He is the person best able to establish and maintain a long-term relationship with the retardate and his family; able to serve and willing to listen, patient and understanding, ready to give advice without criticizing, and consistently available. The physician willing to assume this responsibility can do a great deal to enable the patient and his family to function effectively. Through this effort he does much more than assist one person or one family. He is providing an example and reaffirming the dignity of the mentally retarded person as an individual who has a worthwhile place in our society.
REFERENCES American Medical Association: Mental Retardation, A Handbook for the Primary Physician. Chicago, American Medical ASSOciation, 1965. Clarke, A. M., and Clarke, A. D. B.: Mental Deficiency: The Changing Outlook. New York, The Free Press, 1965. Edgerton, R. B.: The Cloak of Competence. Berkeley, University of California Press, 1967. Group for the Advancement of Psychiatry: Basic Considerations in Mental Retardation: A Preliminary Report. New York, Group for the Advancement of Psychiatry, Report No. 43, 1959. Group for the Advancement of Psychiatry: Mental Retardation, A Family Crisis: The Therapeutic Role of the Physician. New York, Group for the Advancement of Psychiatry, Report No. 56, 1963. Group for the Advancement of Psychiatry: Mild Mental Retardation: A Growing Challenge for the Physician. New York, Group for the Advancement of Psychiatry, Report No. 66, 1967. Hilliard, L. T., and Kerman, B. H.: Mental Deficiency. Boston, Little, Brown & Co., 1965.
1046
HERBERT
J.
GROSSMAN
Masland, R. L., Sarason, S. B., and Gladwin, T.: Mental Subnormality. New York, Basic Books, 1958. Penrose, L. S.: The Biology of Mental Defect. 2nd ed. New York, Gmne & Stratton, 1963. Philips, I., ed.: Prevention and Treatment of Mental Retardation. New York, Basic Books, 1966. Robinson, H. B., and Robinson, N. M.: The Mentally Retarded Child: A Psych:Jlogical Approach. New York, McGraw-HilI Book Co., 1965. Stevens, H. A., and Heber, R.: Mental Retardation. Chicago, University of Chicago Press, 1964. Tizard, J.: Community Services for the Mentally Retarded. London, Oxford University Press, 1964. Tizard, J., and Grad, J. C.: The Mentally Handicapped and Their Families: A Social Survey. London, Oxford University Press, 1961. Illinois State Pediatric Institute 1640 W. Roosevelt Road Chicago, Illinois 60608
J.
GROSSMAN, M.D. '*
A review of these essays underscores the multidisciplinary approach, the complex knowledge, and the array of services required to meet the needs of retarded persons. It is evident that this segment of our society will grow with the expansion of our total population and with the increasingly higher rate of survival among the retarded. We must seek ways to utilize our present knowledge more concisely, increase the efficiency of existing services, and search for new and better methods and techniques, if we are to cope with the complex problems of these handicapped persons. THE RESIDENTIAL FACILITY
One of the major trends will be continued changes in the concepts and utilization of the residential facility. A small core of persons, especially the profoundly retarded, will require almost life-long placement, but they will be only a small percentage of the mentally retarded population. We shall continue to see placement at times of stress in the family situation. The increased institutionalization in the over-40 age group probably reflects the illness or death of parents of the retarded, with a concomitant failure of the community to provide alternatives to such placement. Additional ways of caring for these retarded persons will be a giant step forward in our concept of care for the retarded. In the future, institutions will be used more selectively, more flexibly, and as part of the spectrum of community services, rather than as isolated self-contained terminal resolutions of the problem of what to "do with" the retardate. COMMUNITY SERVICES
This shift away from permanent institutional care will result in a
'* Professor
of Pediatrics, University of Illinois College of Medicine; Director, Illinois State Pediatric Institute, Chicago, Illinois
Pediatric Clinics of North America-Vol. 15. No.4 .. November, 1968
1041
1042
HERBERT
J.
GROSSMAN
greater demand for all community services: medical facilities (including child guidance clinics), special education, vocational training, and social services. To be of value, these services must be readily available to all who need them. This implies that the generic agencies must enlarge the scope of their clientele and expand their services to include the mentally handicapped. The person suffering from the handicap of mental deficiency is much more like the "normal" man than he is different from him. Too often generic agencies have excluded the retarded from their services, losing sight of the fact that the retarded person and his family have needs common to all people. The need to provide services for the retarded has resulted in the establishment of many special services. Such facilities will never be able to handle the volume of service, nor are they necessarily the best way to cope with the problems. Generic agencies, including family service agencies and psychiatric facilities, must assume their proper responsibility for the retarded segment of the population. In addition to the services provided by generic agencies, provisions for special education, and vocational training, there are certain ancillary services which will be necessary if the retardate is to function in the community. Recreational programs should expand to include the retarded person and other handicapped people. Social services, including case work and crisis intervention, should be available for the retardate and for his family. "Baby-sitters" for the older mentally retarded, vacation care, and emergency foster home care can do much to alleviate the stress of continuing care. It has been repeatedly demonstrated that parents can and will do a great deal toward maintaining the retarded child or adult in the community if proper resources are available to them. Even in coping with the severely or profoundly retarded child or those with severe behavioral difficulties, parents can function if temporary relief is available. Interim assistance such as vacation care for the retarded person may mean the difference between continued home care and institutional placement.
THE MILDLY RETARDED
The mildly retarded will receive much more attention in the future. Constituting the largest percentage of the retarded population, the mildly retarded fall into two distinct categories. The privately practicing physician is likely to see the mildly retarded child from a highly educated middle class family, concerned very early about the child's slow development. The much larger segment of the mildly retarded come from economically and culturally impoverished families and often are not identified until they are well into the school-age years. The practicing physician usually does not see these patients in his private office. Many,
IMPLICATIONS FOR THE FurURE
1043
however, are seen in public clinics with a variety of somatic complaints and school difficulties. Through early intervention, programs such as Head Start attempt to prevent or ameliorate the florid manifestations of adaptive failure. Methods to recognize these problems and identify these high-risk children earlier, and programs to deal with this phenomenon more effectively, will need to be developed.
THE RETARDED ADULT It is apparent that in the future many more mentally retarded children will grow up and remain as adults living in the community. Many can function adequately if appropriate resources and supportive help are made available. Institutional placement of young adults is usually the result of social or behavioral difficulties, rather than intellectual deficiency. It has been amply demonstrated that the adjustment of the retarded adult in the community is more dependent upon his adaptive behavior than his intellectual capacity. In view of the probability that many retarded adults will remain permanently in the community, we must devote more efforts to helping them acquire the skills necessary to cope with everyday living. Adequate training in numbers and number concepts has been too long neglected. The ability to tell time, make change, and read addresses can often determine one's employment capacity. Being able to cope with an application form without panic and to ask for help when necessary is crucial in many situations. In addition, attributes such as punctuality, work habits, and personal grooming are not specifically related to intellectual capacity. Appropriate attitudes can be learned and encouraged. Program planning must incorporate more training for life situations. While some of these retarded adults will be able to function so well that they will "blend in" with the general population and therefore no longer be labeled as retarded, most of them will need special help throughout their lives. With appropriate assistance, however, many will be able to maintain themselves. It has already been demonstrated that many mentally retarded persons can work effectively with adequate job stability. Both the federal government and private industry have made strides in utilizing these people. We are dealing here with a paradoxical problem. On the one hand, with an extremely complex and technical society, the expectations from manpower become greater and greater. On the other hand, manpower shortages in certain trades and service occupations are critical. It is apparent that there are many tasks which might be better performed by the mentally retarded. We need further studies of job requirements and individual capacities in order to provide necessary manpower and meet the needs of the mentally retarded for meaningful, productive employment.
1044
HERBERT
J.
GROSSMAN
Another and growing phenomenon of mentally retarded adults in the community will be marriage and procreation. Sterilization laws are being repealed. More and more mentally retarded persons will marry and many will have children. The whole area of sex education for the mentally retarded will need to be re-examined. This will require not only an assessment of methodology, but also a re-evaluation of our mores in regard to sexual conduct and procreation by the retarded. Birth control will require careful and thoughtful study. Our knowledge of genetics will have to be applied to the over-all problem of population control. Some mentally retarded persons are simply incapable of functioning effectively as parents. Many of the less severely handicapped are aware of their limitations in this area of parental responsibility. Moreover, the stigma of sterilization is often intolerable to the retardate's self-concept. The availability of simple and effective contraceptives is imperative for these people. A further consideration will be the growing number of the older mentally retarded in the community. The retarded adult living at home usually faces a major crisis when his parents die or are no longer able to care for him. Society has a stake in resolving this crisis satisfactorily. We can ill afford the tremendous investment in time, effort, and energy in training and helping these people to function effectively in the community, only to "dump" them into institutions when parents cannot provide an adequate home. The greatest fear of parents of the retarded is their concern, "What will happen to my child when I am gone?" We must institute alternatives to institutionalization which will provide care and support with dignity. Substitute care such as foster home placement, community living with cottage parents as supervisors, and programs of partial institutional living, day or night, have already demonstrated their effectiveness.
FURTHER AVENUES FOR INVESTIGATION
Future research will include a continuation of investigations into the biological aspects of retardation, especially in the fields of cytogenetics and biochemistry. Hopefully, new areas of treatment will evolve. Demographic studies which more accurately reHect and define the adaptive capacities of the mentally retarded will aid in assessing the total problem. In psychology we hope that studies will emerge of the mentally retarded as individuals. We need to define qualitative as well as quantitative differences between the retarded and the "normal" elements of our population. Differences and variation in the internal organizations of the mentally retarded child need considerable delineation. Rates of maturation, ultimate levels of functioning, cognitive development, all are vital areas for further investigation. Perhaps if these factors could be more
IMPLICATIONS FOR THE
FUTURE
1045
clearly defined, we might utilize the information in devising more efficient and effective educational procedures. The problems relating to the self concept of the mentally retarded person should receive careful and thoughtful consideration, for this self-concept is the foundation for the adaptive behavior that ultimately determines success or failure in society.
THE PRIMARY PHYSICIAN
Implicit in the foregoing comments is the conviction of the importance of the primary physician in relation to the mentally retarded in our population. The development in recent years of diagnostic clinics, special education, and service facilities does not dilute the responsibility of the family doctor; they only provide additional tools to help make his efforts more effective. He is in the best position to identify the problem and initiate services for the mentally retarded child early in life. As the child matures and develops, the physician's role in dealing with the patient and family can grow and deepen to meet more complicated needs. He is the professional person uniquely situated to serve as a focal resource at times of stress, to aid and counsel the parents in planning, decisions, and social management. He is the person best able to establish and maintain a long-term relationship with the retardate and his family; able to serve and willing to listen, patient and understanding, ready to give advice without criticizing, and consistently available. The physician willing to assume this responsibility can do a great deal to enable the patient and his family to function effectively. Through this effort he does much more than assist one person or one family. He is providing an example and reaffirming the dignity of the mentally retarded person as an individual who has a worthwhile place in our society.
REFERENCES American Medical Association: Mental Retardation, A Handbook for the Primary Physician. Chicago, American Medical ASSOciation, 1965. Clarke, A. M., and Clarke, A. D. B.: Mental Deficiency: The Changing Outlook. New York, The Free Press, 1965. Edgerton, R. B.: The Cloak of Competence. Berkeley, University of California Press, 1967. Group for the Advancement of Psychiatry: Basic Considerations in Mental Retardation: A Preliminary Report. New York, Group for the Advancement of Psychiatry, Report No. 43, 1959. Group for the Advancement of Psychiatry: Mental Retardation, A Family Crisis: The Therapeutic Role of the Physician. New York, Group for the Advancement of Psychiatry, Report No. 56, 1963. Group for the Advancement of Psychiatry: Mild Mental Retardation: A Growing Challenge for the Physician. New York, Group for the Advancement of Psychiatry, Report No. 66, 1967. Hilliard, L. T., and Kerman, B. H.: Mental Deficiency. Boston, Little, Brown & Co., 1965.
1046
HERBERT
J.
GROSSMAN
Masland, R. L., Sarason, S. B., and Gladwin, T.: Mental Subnormality. New York, Basic Books, 1958. Penrose, L. S.: The Biology of Mental Defect. 2nd ed. New York, Gmne & Stratton, 1963. Philips, I., ed.: Prevention and Treatment of Mental Retardation. New York, Basic Books, 1966. Robinson, H. B., and Robinson, N. M.: The Mentally Retarded Child: A Psych:Jlogical Approach. New York, McGraw-HilI Book Co., 1965. Stevens, H. A., and Heber, R.: Mental Retardation. Chicago, University of Chicago Press, 1964. Tizard, J.: Community Services for the Mentally Retarded. London, Oxford University Press, 1964. Tizard, J., and Grad, J. C.: The Mentally Handicapped and Their Families: A Social Survey. London, Oxford University Press, 1961. Illinois State Pediatric Institute 1640 W. Roosevelt Road Chicago, Illinois 60608