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The Residential Care Facility: Indications for Placement
The Residential Care Facility Indications
fOT
Placement
JAMES D. CLEMENTS, M.D. o
The pediatrician confronted with a mentally retarded child has two basic responsibilities: to impart the diagnosis to the child's family and to prescribe a course of treatment. In doing so, he should outline not only the services needed, but also the services available, the adequacy of these services, and appropriate alternatives if some of these services are not available in the locality in which the child lives. IMPARTING THE DIAGNOSIS
The pediatrician must always keep in mind that diagnosis suggests prognosis to both physician and layman. In order to make a meaningful prognosis, guidance must be provided and treatment employed. The three are interdependent, and since development is a continuing process for retarded children as well as for normal children, frequent reassessment of treatment will be needed. Since mental retardation, like any chronic condition, is a problem which involves parents, siblings, and indeed the whole community, the pediatrician and the parents must enter into a partnership of mutual trust and respect in order to keep pace with changes as they occur. There are few absolutes in this field. The problems of care and management must be reduced to a workable plan to meet problems as they arise. No one is in a better position than the pediatrician to develop this plan and set it in motion. He usually has the first opportunity to detect the handicap, to estimate its seriousness, and to bring about constructive rather than destructive attitudes in the family circle.· • Director, Georgia Retardation Center, Chamblee; Clinical Assistant Professor of Pediatrics and of Psychiatry, Emory University School of Medicine, Atlanta; Assistant Clinical Professor of Pediatrics, Medical College of Georgia, Augusta; and Special Consultant in Neurology and Mental Retardation, Department of Pediatrics, Georgia Baptist Hospital, Atlanta, Georgia Pediatric Clinics
of North America-Vol. 15, No.4, November, 1968
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CLEMENTS
This obviously may not be possible in one session. He must impart and elaborate his diagnosis by progressive stages. He must be prepared to take up the practical details of advisory. guidance-the details of everyday care, of management at home and in the community, and if necessary the plans for removing the child from the home setting. The pediatrician, in prescribing treatment for the mentally retarded child, must have intimate knowledge not only of the resources of the patient and his family, but also of the community and the state as well. The pediatrician should be prepared to go far beyond a simple listing of these resources. He must know the quality, variety, and the availability of the resources necessary for the treatment and care of the child under consideration. The prescribing of a course of services may be no less exact than the prescribing of drugs for acute physical diseases. The dosages, sequences, and length and the change and variability of treatment must be considered and weighed just as carefully as with a physical ailment. It is almost inconceivable that a physician would tell a patient seriously ill with pneumonia that he could recover if penicillin were only available, but unfortunately it is not. All too often, the parent of a retarded child is given a list of services his child needs to achieve his maximum potential without any real thought being given to the availability or the quality of the prescribed services.
PRESCRIBING A COURSE OF TREATMENT
In prescribing a course of therapy for the retarded child, the pediatrician is confronted with a kaleidoscopic array of variabilities and uncertainties. Indeed, the very concepts of the nature, causes, and treatment of mental retardation are undergoing more change today than at any time since the entity of mental retardation was conceptualized and recognized. The circumstances of the treatment prescribed will vary widely with locality, family structure, and local and state laws and attitudes. While the child is the patient, the problem involves responsi~ bilities for the family, community, and state. 1 , 11
DIAGNOSIS AND PROGNOSIS
Except in a relatively small number of cases, mental retardation is rarely suspected at birth. 9 Often the diagnosis is made when the child does not develop as expected. Even if diagnosis is made at birth or in the first few months or years of life, a reliable prognosis can rarely be made without repeated examinations, observations, and attempts at treatment. It is therefore unlikely that the final and ultimate pronounce-
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ments of diagnosis and prognosis made by many pediatricians at the birth of obviously defective children are accurate. A relatively accurate prognosis can be made, however, in certain cases, if one is willing to ignore the more modem treatment approaches and to further compound the handicap of both child and family. This is not infrequently done by the physician who, in ignoring treatment resources for the child and in ignorance of family dynamics and feelings, advises the family of a newborn child with Down's syndrome, "Get rid of the baby before you learn to love him."2 This is another example of out-and-out malpractice still being taught in certain schools of medicine and tolerated in many communities and medical societies throughout this nation. Prognosis should never be achieved by default.
THE RESIDENTIAL FACILITY: ONE RESOURCE
The treatment-oriented residential facility is only one of a large number of family, community, and state resources needed in the pediatrician's armamentarium for the management of symptoms of mental retardation. 12 The residential facility cannot be viewed in isolation, but only as a part of many and varied treatment resources. It should not be used as the solution for every patient with mental retardation, nor should it become the court of last resort, the treatment of choice, the miracle drug, or the panacea for every problem of mental retardation. Before institutionalization is considered as the treatment of choiceand indeed it should be considered before it is prescribed-the pediatrician must be aware of the programs offered by and available in the institution, the quality of these programs, and the availability of admission to the institution.
FACTORS DETERMINING THE TREATMENT OF CHOICE
Before prescribing institutionalization the pediatrician should consider many factors. 8 , 10 Specific Treatment Needs of the Patient. While considering the particular and specific needs of the mentally retarded child, it is imperative to consider his total needs. While the symptom of mental retardation may be the presenting complaint, associated handicaps, such as visual and auditory defects, neuromuscular disorders, orthopedic defects, and congenital heart disease, must be considered. Indeed, the symptom of mental retardation may not be the most disabling condition of the patient under consideration. Conversely, other handicaps may well aggravate and compound the disability already imposed by the symptom of mental retardation. The behavior of the child and the inter-
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relationships of his family may often be the determining factor for decisions affecting future treatment. The family of the easily-managed retarded child rarely presents a preconceived notion of placement outside the home setting. Emotional Stability and Auitudes of the Family. The timing and quality of family guidance by the pediatrician, directed particularly toward the parents and specifically toward the mother, frequently determine the long-term and ultimate course of therapy afforded the mentally retarded child. Some families are determined to keep the mentally retarded child in the home regardless of the child's needs, met or unmet, and regardless of the needs of other family members, financial or emotional. Other families, seemingly without regard to the mentally retarded child's present and future needs, make a drastic and final decision to place the child outside the home. Therefore, family attitudes, stability, and abilities must be carefully analyzed as considerations for the treatment of choice. Presence of Other Children in the Family. The presence of other children in the family may be or may become a dominant factor in proper treatment of the retarded child. Some families attempt to reduce the level of family activities to accommodate the needs of the retarded child. Frequently this is to the disadvantage of their normal children and sometimes results in serious neglect. Other families manage to blend activities of family life in such a way as to incorporate successfully the emotional and social needs of all members. For the latter condition, early and repeated counseling is frequently necessary. Possible Resources Other than Institutions. Possible resources other than institutions must be carefully considered in writing a prescription for treatment. This is not to say that the institution should be considered only after all other possible methods of treatment have failed and been abandoned. It is only logical and practical, however, to attempt to prescribe the most appropriate, convenient, and least familydisrupting services possible. With the rapid advancement of community programs-special education classes, day care, diagnostic and evaluation services, home nursing services, and recreation programs, for instanceit is no longer necessary to institutionalize a retarded child just for educational or day care needs. It cannot be overemphasized that when weighing home care against removal from the home the child's needsmet and unmet-must be carefully considered before prescribing separation from home and family. Age of the Patient and Associated Handicaps. As the retarded child advances to school age, adolescence, and finally to chronologic adulthood, his handicaps-mental, social, and emotional-become more obvious to the family, his peers, and the community. Neuromuscular disorders become suddenly much more burdensome when the child leaves the confines of his home and begins to attend school. During adolescence and in later life, social and legal problems and the problem
THE RESIDENTIAL CARE FACILITY
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of aged or deceased parents may make it impractical for the mentally retarded individual to remain at home. Degree of Mental Retardation. The degree of mental retardation frequently is the determining factor in deciding the long-term course of treatment. While the measured intelligence quotient should not be considered fixed or static, by the age of 6 or 7 years, a reasonable determination of potential can usually be assessed. Most profoundly and severely retarded children are likely to require institutional services at some point, many at a relatively young age. The moderately retarded child, however, even after he reaches adulthood, might well remain in the home and community if adequate protective and supervisory services are available and no other handicaps severely restrict him. Likewise, the mildly retarded individual, with adequate home and community services, can reasonably be expected to remain relatively independent throughout his life. Economic Status of Parents. With the rising costs of institutional care, charges to parents for the care of their child in institutional facilities rise proportionately. Most states now require the parents to pay part or all of the per diem cost of care for their child while institutionalized. For the child requiring primarily care and protection, particularly the infant, costs would probably be lower for home care. The child needing extensive medical, nursing, and rehabilitative services would, except in areas with large medical centers, be unable to obtain these services at home. Even if services are available, cost for most parents might well be prohibitive. Certain state residential facilities still provide little more than physical care and protective services. If this is the case, the child is better off at home, and the expense will probably be less to the family. For the child of wealthy parents, consideration might be given to the relatively expensive private facilities. Some of these private facilities offer treatment programs of high quality that are tailored to the individual child's needs and requirements. Most are somewhat restrictive in their variety of programs, however, and emphasize programs for certain ranges of disability. Again, the particular child's requirements and the facility's programs should be carefully evaluated and compared before placement is recommended. Recommendations for placement, particularly for the child requiring long-term care, should be avoided, if possible, if the placement would necessitate a catastrophic financial burden to the family. Advantages must be carefully weighed against disadvantages-therapeutically for the child, emotionally for the child and his family, and economically for total family needs and requirements. Availability of Institutional Facilities. Even when institutionalization is the treatment of choice, the pediatrician should carefully consider the availability of space in both public and private facilities before making a recommendation for early or immediate placement. 1s Many states
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have long waiting lists for admission of children and adults to state supported facilities. Many of these facilities are already impossibly overcrowded and offer little in the way of a modern treatment program. The decision of a family to place a child in an institution is a difficult, emotionally shattering experience. Recommendation for immediate placement coupled with the parents' inability to gain admission for their child to a residential facility compounds the problem at hand, tends to further break down the emotional stability of the family, and ultimately leaves them in a state of frustration, if not despair. Quality and Availability of Treatment Programs Within Residential Facilities. Both the quality and the availability of residential treatment programs may vary to a considerable degree between and within states. Admission policies and procedures vary from institution to institution. Many states have a residency requirement. Some facilities have a minimum or maximum age requirement or both. The degree of retardation may prevent the child's admission. Many facilities have long waiting lists and use various factors in assessing eligibility. Most residential facilities have minimum space requirements, a substantial number are overcrowded, and some actually exceed their rated capacity. A matter of even more concern is the fact that there may be a lack of treatment programs geared to the needs of the child under consideration for admission. While most of the state residential facilities now in operation do provide some type of educational program, it is usually of less quality and quantity than that provided in many community public schools. Therapeutic programs in behavioral skills, physical therapy, and vocational skills in most facilities are nonexistent or minimal for most residents. If, in fact, residential treatment is to be therapeutic, selective, and temporary in nature, continued upgrading of both physical plants and programs will be necessary. Local and State Customs, Attitudes, Policies, and Laws. Local customs may overrule professional judgment in the determination of the best therapeutic program for the retarded child. Certain states, for example, still offer an institutional educational program exclusively for the mildly retarded child. Certain communities almost demand placement of the identifiable retarded child outside the home and community setting. State policies may "guide" retarded individuals toward institutional care. Civil and crirninallaw may particularly penalize the retarded individual to a point that one must make the choice of a residential setting, the common jail, or prison. 6 While custom and law should not ,override professional judgment, the pediatrician should be aware of these factors, if applicable, and make provisions for more suitable alternatives. 7 It is of interest to note that many pediatricians and obstetricians still advise immediate placement of the infant with Down's syndrome in an institution for the mentally retarded. Perhaps there is a need for revision of "professional" customs, policies, and attitudes as well.
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RESIDENTIAL CARE: THE TREATMENT OF CHOICE
While it must be recognized that in our culture parents are expected to assume the responsibility for providing the basic needs of their children, society, in certain cases, must assist the family in this responsibility. The parents of a retarded child should not default in their responsibility of rearing their child at home when possible and practical; neither must they default if placement outside the home setting is indicated. 3 The institution for the mentally retarded child must be viewed as any other therapeutic tool. It should not be viewed as an initial or terminal facility, but rather, as one designed to meet the needs of the retarded individual during a period when the family and the community are unable to meet his needs. Its use should be reserved for that particular point in the retarded individual's life when the resources of the residential facility most appropriately suit his needs, and the resources of the residential facility should only be available and utilized at these carefully selected periods. 5 The appropriate time of return to the community must always be as visible and carefully considered as the appropriate time for admission. Indeed, the family physician should continue his responsibility for direction of treatment and advise on duration of institutional care after careful review of the progress and response to therapy of the patient. Recommendation for institutionalization is not the final solution for the retarded individual, and should not dissolve the responsibilities of the physician for the care of his patient. There are certain problems and conditions that are likely to require the resources unique to the institution for the mentally retarded. The particular point in time to bring these resources into play must be carefully determined after considering the needs and resources of the retarded individual, the family, and the community. Overwhelming Unmet Medical and Nursing Needs. Rarely are the physician and family confronted with a mentally retarded individual who requires constant medical and skilled nursing care for the maintenance of life. If such care is necessary, however, most local hospitals are not equipped to offer it on a long-term basis, nor is the average family financially able to maintain a patient in this setting for extended periods of time. The usual home-nursing program is not geared to meet the needs of this type of patient either. In general, the institutional facility for the mentally retarded is the treatment of choice. Temporary Admission. During certain periods of stress or emergency, the family of the mentally retarded individual may be unable to provide adequately for his needs in the home. Examples might be surgery or illness of the mother, temporary displacement of the family, periods in which the mother or father may be absent from the family setting, prolonged illness of siblings, or even a family vacation. Not only would
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temporary absence of the retarded individual from the family setting be desirable; it would offer an opportunity for in-depth evaluation of the retarded individual by the resources of the institutional facility and perhaps provide a trial of change in treatment under carefully observed and controlled conditions. In some cases, a "breathing period" away from the constant demands for care of the retarded member may add considerably to the family's ability to provide continuing care for the retarded member at home. In-Depth Diagnosis, Evaluation, and Trial of Therapy. Some mentally retarded individuals need a more elaborate and prolonged diagnosis and evaluation than is generally available in the average medical community or the community diagnostic and evaluation center for the mentally retarded. It is impractical for most families to accompany their child to a distant city for days, weeks, or months. It is also usually advisable, when this type of evaluation is indicated, to have a trial of therapy that can only be given under controlled conditions. Adjustments and reevaluations are often necessary before a home-treatment program can reasonably be handled with ease and success. Sudden, Severe, and Unexpected Regression of the Behavior or Physical Condition of the Retarded Individual. It is not unusual during periods of family stress or periods of relative inactivity in community programs in which the retarded individual has been participating for him to react with behavior incompatible with normal home and community activities. 16 Temporary removal may provide a settling or stabilizing effect which can add measurably to the pleasurable and profitable management of the mentally retarded at home by his family. Sudden drastic and prolonged regressions in the physical condition of the retarded individual might also be managed in a similar fashion. Mentally Retarded Individual Who Is Progressively Deteriorating. With certain metabolic disorders and particularly with degenerative diseases of the central nervous system, placement of the child outside the home setting is almost always inevitable at some point in the course of the disease. This is especially true for conditions of long duration. Financially, emotionally, and from the standpoint of the constant nursing care required, management outside the home is usually best for those individuals whose condition is complicated by uncontrollable convulsive seizures and repeated episodes of infections and for those in whom bed sores and other skin problems become overwhelming. In the average community, the best source for care of this type is the residential facility for the mentally retarded. Profoundly Retarded Ambulatory Child. A profoundly retarded ambulatory child, particularly one who is hyperactive and incapable of relating to or participating socially with others, almost always requires replacement outside the home setting. Outside placement, generally in
1037
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the residential facility for the mentally retarded, may be necessary by the time the child is 5 or 6 years of age. 14 Severely Retarded Ambulatory Child. In the absence of obstreperous and destructive behavior, unusual medical and unmet medical needs, and special family problems, the severely retarded child could reasonably be expected to remain at home during the early years of his life. It should be remembered, however, that, as the child grows older, if the problems of adolescence become acute and family unity dissolves with age or death of parents, institutional care is usually the treatment of choice. Moderately Retarded, Semidependent Individual. As long as home and community care and supervision are available, the moderately retarded are best served in this setting. With deterioration of the family group, or in the event that overt unacceptable behavior occurs which cannot be controlled with reasonable treatment, residential placement is usually indicated. Behavior disorders, particularly during adolescence and young adulthood, are not uncommon and are usually ameliorable by therapy. The aging parent may become unable to continue adequate supervision of the older moderately retarded individual. However, decisions for residential placement should be withheld until situations in the home or community dictate a change in treatment. Nonambulatory Retarded Individual. The treatment of nonambulatory retarded individuals is frequently delegated to the residential facility. Nonambulation, especially in the young and physically small retarded individual, is not an indication for placement. Serious feeding difficulties, especially if tube feeding is required; repeated, serious, difficult-tomanage medical emergencies; and increasing physical size may preclude successful home management. The nonambulatory young child uncomplicated by other problems does not constitute an unmanageable homecare problem. It is only when other problems of a serious nature occur that institutionalization is indicated. Inadequate Home SeUing. Certain families, for many reasons, find home care of the mentally retarded an entirely unsatisfactory solution. 15 When overriding emotional problems of the siblings, the necessity for both parents to work outside the home, the absence of one parent, the behavior of the retarded individual, or social and financial problems interfere with adequate home care, temporary or extended placement of the mentally retarded individual may become necessary. If the retarded individual presents no unusual problems of care or behavior and a home setting is the treatment of choice, every effort should be made to retain the retarded individual in his community. Foster home care and other alternatives should be carefully investigated before residential care in a facility for the mentally retarded is seriously considered. Erroneous placement in a residential facility might prove far more harmful to the retarded individual than some of the problems leading to C
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his placement. For those retarded individuals in serious criminal or legal difficulties, placement in a state residential facility for the mentally retarded may be more appropriate than placement in the prisons or common jails. Programs of rehabilitation in most state prisons simply are not geared to the performance level of the mentally retarded person. Absence of Community Programs. Where adequate community programs exist, less than 5 per cent of the mentally retarded population at anyone time will require institutional treatment. Although community programs are rapidly developing, it is the unusual community that has programs of adequate quality and quantity. It may be necessary to continue for a period of time augmenting community programs with programs of the residential facility, at least on a short-term basis. This does not, however, relieve the family, the physician, or the community of the responsibility of continuously upgrading and expanding community facilities to better serve all citizens. The physician in the isolated rural setting will, of necessity, continue to be more dependent on state residential facilities than his urban colleague.
SUMMARY The pediatrician's responsibility to the mentally retarded child and his family is to diagnose as accurately as possible the presence of mental retardation and its etiology. Imparting the diagnosis and writing a prescription of therapy will generally be done in progressive stages. Many factors must be considered before the treatment of choice is determined. The residential care facility is only one of a number of therapeutic resources that may be necessary for proper treatment of mental retardation. It should be used when therapeutically indicated. Rarely should residential placement be a final treatment resource; it should be utilized only at a point in time when such treatment best meets the needs of the retarded individual and his family.
REFERENCES 1. Bowman, P. W.: Basic Considerations in a Placement Program for the Mentally Retarded. Presentation at the Annual Meeting, American Association on Mental Deficiency, New York City, New York, May, 1962. 2. Davis, C. H., Jr.: The retarded child-What can the physician do? The Virginia Med. Monthly, 87:66, 1960. 3. Dittmann, L.: The family of the child in an institution. Amer. J. Ment. Defic., 66: 759,1962. 4. Gesell, A., and Amatruda, C. S.: Developmental Diagnosis. 2nd edition. New York, Hoeber Medical Division, Harper and Row, Publishers, 1965. 5. The Mentally Retarded: Guidelines for Determining Need for Residential Care. Wisconsin Department of Public Welfare, Division of Mental Hygiene, Madison, Wisconsin, January, 1963.
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6. Mezer, R. R., and Rheingold, P. D.: Mental capacity and incompetency: A psycho-legal problem. Amer. J. Psychiat., 118:827, 1962. 7. Mild Mental Retardation: A Growing Challenge to the Physician. The Committee on Mental Retardation, Group for the Advancement of Psychiatry, Vol. VI, Report No. 66, Mental Health Materials Center, Inc., September, 1967. 8. Nelson, W. E.: Textbook of Pediatrics. 8th edition. Philadelphia, W. B. Saunders Company, 1964. 9. Olshansky, S., and Sternfeld, L.: Attitudes of Some Pediatricians Toward the Institutionalization of Mentally Retarded Children. Institutionalizing Mentally Retarded Children . . . Attitudes of Some Physicians. U. S. Department of Health, Education, and Welfare, Welfare Administration, Children's Bureau, 1963. 10. Pearson, P. H., and Menefee, A. R.: Medical and social management of the mentally retarded. GP, 81:78, 1965. 11. The President's Panel on Mental Retardation: A Proposed Program for National Action to Combat Mental Retardation. Washington, D. C., U. S. Govermnent Printing Office, 1962. 12. Roselle, E. N.: New horizons for the mentally retarded when a state looks at the problem as a whole. Amer. J. Ment. Defic., 59:365, 1955. 13. Scheerenberger, R. C.: A Census of Public and Private Residential Facilities for the Mentally Retarded in the United States and Canada. Directory of Residential Facilities for the Mentally Retarded, American Association on Mental Deficiency, 1965. 14. Tarjan, G., Wright, S. W., Dingman, H. F., and Eyman, M. A.: Natural history of mental deficiency in a state hospital-Selected characteristics of first admissions and their environments. Amer. J. Dis. Child., 101:197, 1961. 15. Yannet, H.: The community management of the mentally retarded. J. Louisiana Med. Soc., 107:291, 1955. 16. Yannet, H.: The community responsibility for the care of the mentally retarded. J. Pediat., 50:397, 1957. Georgia Retardation Center North Peachtree Road and Peeler Road Chamblee, Georgia 30005
fOT
Placement
JAMES D. CLEMENTS, M.D. o
The pediatrician confronted with a mentally retarded child has two basic responsibilities: to impart the diagnosis to the child's family and to prescribe a course of treatment. In doing so, he should outline not only the services needed, but also the services available, the adequacy of these services, and appropriate alternatives if some of these services are not available in the locality in which the child lives. IMPARTING THE DIAGNOSIS
The pediatrician must always keep in mind that diagnosis suggests prognosis to both physician and layman. In order to make a meaningful prognosis, guidance must be provided and treatment employed. The three are interdependent, and since development is a continuing process for retarded children as well as for normal children, frequent reassessment of treatment will be needed. Since mental retardation, like any chronic condition, is a problem which involves parents, siblings, and indeed the whole community, the pediatrician and the parents must enter into a partnership of mutual trust and respect in order to keep pace with changes as they occur. There are few absolutes in this field. The problems of care and management must be reduced to a workable plan to meet problems as they arise. No one is in a better position than the pediatrician to develop this plan and set it in motion. He usually has the first opportunity to detect the handicap, to estimate its seriousness, and to bring about constructive rather than destructive attitudes in the family circle.· • Director, Georgia Retardation Center, Chamblee; Clinical Assistant Professor of Pediatrics and of Psychiatry, Emory University School of Medicine, Atlanta; Assistant Clinical Professor of Pediatrics, Medical College of Georgia, Augusta; and Special Consultant in Neurology and Mental Retardation, Department of Pediatrics, Georgia Baptist Hospital, Atlanta, Georgia Pediatric Clinics
of North America-Vol. 15, No.4, November, 1968
1029
1030
JAMES
D.
CLEMENTS
This obviously may not be possible in one session. He must impart and elaborate his diagnosis by progressive stages. He must be prepared to take up the practical details of advisory. guidance-the details of everyday care, of management at home and in the community, and if necessary the plans for removing the child from the home setting. The pediatrician, in prescribing treatment for the mentally retarded child, must have intimate knowledge not only of the resources of the patient and his family, but also of the community and the state as well. The pediatrician should be prepared to go far beyond a simple listing of these resources. He must know the quality, variety, and the availability of the resources necessary for the treatment and care of the child under consideration. The prescribing of a course of services may be no less exact than the prescribing of drugs for acute physical diseases. The dosages, sequences, and length and the change and variability of treatment must be considered and weighed just as carefully as with a physical ailment. It is almost inconceivable that a physician would tell a patient seriously ill with pneumonia that he could recover if penicillin were only available, but unfortunately it is not. All too often, the parent of a retarded child is given a list of services his child needs to achieve his maximum potential without any real thought being given to the availability or the quality of the prescribed services.
PRESCRIBING A COURSE OF TREATMENT
In prescribing a course of therapy for the retarded child, the pediatrician is confronted with a kaleidoscopic array of variabilities and uncertainties. Indeed, the very concepts of the nature, causes, and treatment of mental retardation are undergoing more change today than at any time since the entity of mental retardation was conceptualized and recognized. The circumstances of the treatment prescribed will vary widely with locality, family structure, and local and state laws and attitudes. While the child is the patient, the problem involves responsi~ bilities for the family, community, and state. 1 , 11
DIAGNOSIS AND PROGNOSIS
Except in a relatively small number of cases, mental retardation is rarely suspected at birth. 9 Often the diagnosis is made when the child does not develop as expected. Even if diagnosis is made at birth or in the first few months or years of life, a reliable prognosis can rarely be made without repeated examinations, observations, and attempts at treatment. It is therefore unlikely that the final and ultimate pronounce-
THE RESIDENTIAL CARE FACILITY
1031
ments of diagnosis and prognosis made by many pediatricians at the birth of obviously defective children are accurate. A relatively accurate prognosis can be made, however, in certain cases, if one is willing to ignore the more modem treatment approaches and to further compound the handicap of both child and family. This is not infrequently done by the physician who, in ignoring treatment resources for the child and in ignorance of family dynamics and feelings, advises the family of a newborn child with Down's syndrome, "Get rid of the baby before you learn to love him."2 This is another example of out-and-out malpractice still being taught in certain schools of medicine and tolerated in many communities and medical societies throughout this nation. Prognosis should never be achieved by default.
THE RESIDENTIAL FACILITY: ONE RESOURCE
The treatment-oriented residential facility is only one of a large number of family, community, and state resources needed in the pediatrician's armamentarium for the management of symptoms of mental retardation. 12 The residential facility cannot be viewed in isolation, but only as a part of many and varied treatment resources. It should not be used as the solution for every patient with mental retardation, nor should it become the court of last resort, the treatment of choice, the miracle drug, or the panacea for every problem of mental retardation. Before institutionalization is considered as the treatment of choiceand indeed it should be considered before it is prescribed-the pediatrician must be aware of the programs offered by and available in the institution, the quality of these programs, and the availability of admission to the institution.
FACTORS DETERMINING THE TREATMENT OF CHOICE
Before prescribing institutionalization the pediatrician should consider many factors. 8 , 10 Specific Treatment Needs of the Patient. While considering the particular and specific needs of the mentally retarded child, it is imperative to consider his total needs. While the symptom of mental retardation may be the presenting complaint, associated handicaps, such as visual and auditory defects, neuromuscular disorders, orthopedic defects, and congenital heart disease, must be considered. Indeed, the symptom of mental retardation may not be the most disabling condition of the patient under consideration. Conversely, other handicaps may well aggravate and compound the disability already imposed by the symptom of mental retardation. The behavior of the child and the inter-
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CLEMENTS
relationships of his family may often be the determining factor for decisions affecting future treatment. The family of the easily-managed retarded child rarely presents a preconceived notion of placement outside the home setting. Emotional Stability and Auitudes of the Family. The timing and quality of family guidance by the pediatrician, directed particularly toward the parents and specifically toward the mother, frequently determine the long-term and ultimate course of therapy afforded the mentally retarded child. Some families are determined to keep the mentally retarded child in the home regardless of the child's needs, met or unmet, and regardless of the needs of other family members, financial or emotional. Other families, seemingly without regard to the mentally retarded child's present and future needs, make a drastic and final decision to place the child outside the home. Therefore, family attitudes, stability, and abilities must be carefully analyzed as considerations for the treatment of choice. Presence of Other Children in the Family. The presence of other children in the family may be or may become a dominant factor in proper treatment of the retarded child. Some families attempt to reduce the level of family activities to accommodate the needs of the retarded child. Frequently this is to the disadvantage of their normal children and sometimes results in serious neglect. Other families manage to blend activities of family life in such a way as to incorporate successfully the emotional and social needs of all members. For the latter condition, early and repeated counseling is frequently necessary. Possible Resources Other than Institutions. Possible resources other than institutions must be carefully considered in writing a prescription for treatment. This is not to say that the institution should be considered only after all other possible methods of treatment have failed and been abandoned. It is only logical and practical, however, to attempt to prescribe the most appropriate, convenient, and least familydisrupting services possible. With the rapid advancement of community programs-special education classes, day care, diagnostic and evaluation services, home nursing services, and recreation programs, for instanceit is no longer necessary to institutionalize a retarded child just for educational or day care needs. It cannot be overemphasized that when weighing home care against removal from the home the child's needsmet and unmet-must be carefully considered before prescribing separation from home and family. Age of the Patient and Associated Handicaps. As the retarded child advances to school age, adolescence, and finally to chronologic adulthood, his handicaps-mental, social, and emotional-become more obvious to the family, his peers, and the community. Neuromuscular disorders become suddenly much more burdensome when the child leaves the confines of his home and begins to attend school. During adolescence and in later life, social and legal problems and the problem
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of aged or deceased parents may make it impractical for the mentally retarded individual to remain at home. Degree of Mental Retardation. The degree of mental retardation frequently is the determining factor in deciding the long-term course of treatment. While the measured intelligence quotient should not be considered fixed or static, by the age of 6 or 7 years, a reasonable determination of potential can usually be assessed. Most profoundly and severely retarded children are likely to require institutional services at some point, many at a relatively young age. The moderately retarded child, however, even after he reaches adulthood, might well remain in the home and community if adequate protective and supervisory services are available and no other handicaps severely restrict him. Likewise, the mildly retarded individual, with adequate home and community services, can reasonably be expected to remain relatively independent throughout his life. Economic Status of Parents. With the rising costs of institutional care, charges to parents for the care of their child in institutional facilities rise proportionately. Most states now require the parents to pay part or all of the per diem cost of care for their child while institutionalized. For the child requiring primarily care and protection, particularly the infant, costs would probably be lower for home care. The child needing extensive medical, nursing, and rehabilitative services would, except in areas with large medical centers, be unable to obtain these services at home. Even if services are available, cost for most parents might well be prohibitive. Certain state residential facilities still provide little more than physical care and protective services. If this is the case, the child is better off at home, and the expense will probably be less to the family. For the child of wealthy parents, consideration might be given to the relatively expensive private facilities. Some of these private facilities offer treatment programs of high quality that are tailored to the individual child's needs and requirements. Most are somewhat restrictive in their variety of programs, however, and emphasize programs for certain ranges of disability. Again, the particular child's requirements and the facility's programs should be carefully evaluated and compared before placement is recommended. Recommendations for placement, particularly for the child requiring long-term care, should be avoided, if possible, if the placement would necessitate a catastrophic financial burden to the family. Advantages must be carefully weighed against disadvantages-therapeutically for the child, emotionally for the child and his family, and economically for total family needs and requirements. Availability of Institutional Facilities. Even when institutionalization is the treatment of choice, the pediatrician should carefully consider the availability of space in both public and private facilities before making a recommendation for early or immediate placement. 1s Many states
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have long waiting lists for admission of children and adults to state supported facilities. Many of these facilities are already impossibly overcrowded and offer little in the way of a modern treatment program. The decision of a family to place a child in an institution is a difficult, emotionally shattering experience. Recommendation for immediate placement coupled with the parents' inability to gain admission for their child to a residential facility compounds the problem at hand, tends to further break down the emotional stability of the family, and ultimately leaves them in a state of frustration, if not despair. Quality and Availability of Treatment Programs Within Residential Facilities. Both the quality and the availability of residential treatment programs may vary to a considerable degree between and within states. Admission policies and procedures vary from institution to institution. Many states have a residency requirement. Some facilities have a minimum or maximum age requirement or both. The degree of retardation may prevent the child's admission. Many facilities have long waiting lists and use various factors in assessing eligibility. Most residential facilities have minimum space requirements, a substantial number are overcrowded, and some actually exceed their rated capacity. A matter of even more concern is the fact that there may be a lack of treatment programs geared to the needs of the child under consideration for admission. While most of the state residential facilities now in operation do provide some type of educational program, it is usually of less quality and quantity than that provided in many community public schools. Therapeutic programs in behavioral skills, physical therapy, and vocational skills in most facilities are nonexistent or minimal for most residents. If, in fact, residential treatment is to be therapeutic, selective, and temporary in nature, continued upgrading of both physical plants and programs will be necessary. Local and State Customs, Attitudes, Policies, and Laws. Local customs may overrule professional judgment in the determination of the best therapeutic program for the retarded child. Certain states, for example, still offer an institutional educational program exclusively for the mildly retarded child. Certain communities almost demand placement of the identifiable retarded child outside the home and community setting. State policies may "guide" retarded individuals toward institutional care. Civil and crirninallaw may particularly penalize the retarded individual to a point that one must make the choice of a residential setting, the common jail, or prison. 6 While custom and law should not ,override professional judgment, the pediatrician should be aware of these factors, if applicable, and make provisions for more suitable alternatives. 7 It is of interest to note that many pediatricians and obstetricians still advise immediate placement of the infant with Down's syndrome in an institution for the mentally retarded. Perhaps there is a need for revision of "professional" customs, policies, and attitudes as well.
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RESIDENTIAL CARE: THE TREATMENT OF CHOICE
While it must be recognized that in our culture parents are expected to assume the responsibility for providing the basic needs of their children, society, in certain cases, must assist the family in this responsibility. The parents of a retarded child should not default in their responsibility of rearing their child at home when possible and practical; neither must they default if placement outside the home setting is indicated. 3 The institution for the mentally retarded child must be viewed as any other therapeutic tool. It should not be viewed as an initial or terminal facility, but rather, as one designed to meet the needs of the retarded individual during a period when the family and the community are unable to meet his needs. Its use should be reserved for that particular point in the retarded individual's life when the resources of the residential facility most appropriately suit his needs, and the resources of the residential facility should only be available and utilized at these carefully selected periods. 5 The appropriate time of return to the community must always be as visible and carefully considered as the appropriate time for admission. Indeed, the family physician should continue his responsibility for direction of treatment and advise on duration of institutional care after careful review of the progress and response to therapy of the patient. Recommendation for institutionalization is not the final solution for the retarded individual, and should not dissolve the responsibilities of the physician for the care of his patient. There are certain problems and conditions that are likely to require the resources unique to the institution for the mentally retarded. The particular point in time to bring these resources into play must be carefully determined after considering the needs and resources of the retarded individual, the family, and the community. Overwhelming Unmet Medical and Nursing Needs. Rarely are the physician and family confronted with a mentally retarded individual who requires constant medical and skilled nursing care for the maintenance of life. If such care is necessary, however, most local hospitals are not equipped to offer it on a long-term basis, nor is the average family financially able to maintain a patient in this setting for extended periods of time. The usual home-nursing program is not geared to meet the needs of this type of patient either. In general, the institutional facility for the mentally retarded is the treatment of choice. Temporary Admission. During certain periods of stress or emergency, the family of the mentally retarded individual may be unable to provide adequately for his needs in the home. Examples might be surgery or illness of the mother, temporary displacement of the family, periods in which the mother or father may be absent from the family setting, prolonged illness of siblings, or even a family vacation. Not only would
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temporary absence of the retarded individual from the family setting be desirable; it would offer an opportunity for in-depth evaluation of the retarded individual by the resources of the institutional facility and perhaps provide a trial of change in treatment under carefully observed and controlled conditions. In some cases, a "breathing period" away from the constant demands for care of the retarded member may add considerably to the family's ability to provide continuing care for the retarded member at home. In-Depth Diagnosis, Evaluation, and Trial of Therapy. Some mentally retarded individuals need a more elaborate and prolonged diagnosis and evaluation than is generally available in the average medical community or the community diagnostic and evaluation center for the mentally retarded. It is impractical for most families to accompany their child to a distant city for days, weeks, or months. It is also usually advisable, when this type of evaluation is indicated, to have a trial of therapy that can only be given under controlled conditions. Adjustments and reevaluations are often necessary before a home-treatment program can reasonably be handled with ease and success. Sudden, Severe, and Unexpected Regression of the Behavior or Physical Condition of the Retarded Individual. It is not unusual during periods of family stress or periods of relative inactivity in community programs in which the retarded individual has been participating for him to react with behavior incompatible with normal home and community activities. 16 Temporary removal may provide a settling or stabilizing effect which can add measurably to the pleasurable and profitable management of the mentally retarded at home by his family. Sudden drastic and prolonged regressions in the physical condition of the retarded individual might also be managed in a similar fashion. Mentally Retarded Individual Who Is Progressively Deteriorating. With certain metabolic disorders and particularly with degenerative diseases of the central nervous system, placement of the child outside the home setting is almost always inevitable at some point in the course of the disease. This is especially true for conditions of long duration. Financially, emotionally, and from the standpoint of the constant nursing care required, management outside the home is usually best for those individuals whose condition is complicated by uncontrollable convulsive seizures and repeated episodes of infections and for those in whom bed sores and other skin problems become overwhelming. In the average community, the best source for care of this type is the residential facility for the mentally retarded. Profoundly Retarded Ambulatory Child. A profoundly retarded ambulatory child, particularly one who is hyperactive and incapable of relating to or participating socially with others, almost always requires replacement outside the home setting. Outside placement, generally in
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the residential facility for the mentally retarded, may be necessary by the time the child is 5 or 6 years of age. 14 Severely Retarded Ambulatory Child. In the absence of obstreperous and destructive behavior, unusual medical and unmet medical needs, and special family problems, the severely retarded child could reasonably be expected to remain at home during the early years of his life. It should be remembered, however, that, as the child grows older, if the problems of adolescence become acute and family unity dissolves with age or death of parents, institutional care is usually the treatment of choice. Moderately Retarded, Semidependent Individual. As long as home and community care and supervision are available, the moderately retarded are best served in this setting. With deterioration of the family group, or in the event that overt unacceptable behavior occurs which cannot be controlled with reasonable treatment, residential placement is usually indicated. Behavior disorders, particularly during adolescence and young adulthood, are not uncommon and are usually ameliorable by therapy. The aging parent may become unable to continue adequate supervision of the older moderately retarded individual. However, decisions for residential placement should be withheld until situations in the home or community dictate a change in treatment. Nonambulatory Retarded Individual. The treatment of nonambulatory retarded individuals is frequently delegated to the residential facility. Nonambulation, especially in the young and physically small retarded individual, is not an indication for placement. Serious feeding difficulties, especially if tube feeding is required; repeated, serious, difficult-tomanage medical emergencies; and increasing physical size may preclude successful home management. The nonambulatory young child uncomplicated by other problems does not constitute an unmanageable homecare problem. It is only when other problems of a serious nature occur that institutionalization is indicated. Inadequate Home SeUing. Certain families, for many reasons, find home care of the mentally retarded an entirely unsatisfactory solution. 15 When overriding emotional problems of the siblings, the necessity for both parents to work outside the home, the absence of one parent, the behavior of the retarded individual, or social and financial problems interfere with adequate home care, temporary or extended placement of the mentally retarded individual may become necessary. If the retarded individual presents no unusual problems of care or behavior and a home setting is the treatment of choice, every effort should be made to retain the retarded individual in his community. Foster home care and other alternatives should be carefully investigated before residential care in a facility for the mentally retarded is seriously considered. Erroneous placement in a residential facility might prove far more harmful to the retarded individual than some of the problems leading to C
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his placement. For those retarded individuals in serious criminal or legal difficulties, placement in a state residential facility for the mentally retarded may be more appropriate than placement in the prisons or common jails. Programs of rehabilitation in most state prisons simply are not geared to the performance level of the mentally retarded person. Absence of Community Programs. Where adequate community programs exist, less than 5 per cent of the mentally retarded population at anyone time will require institutional treatment. Although community programs are rapidly developing, it is the unusual community that has programs of adequate quality and quantity. It may be necessary to continue for a period of time augmenting community programs with programs of the residential facility, at least on a short-term basis. This does not, however, relieve the family, the physician, or the community of the responsibility of continuously upgrading and expanding community facilities to better serve all citizens. The physician in the isolated rural setting will, of necessity, continue to be more dependent on state residential facilities than his urban colleague.
SUMMARY The pediatrician's responsibility to the mentally retarded child and his family is to diagnose as accurately as possible the presence of mental retardation and its etiology. Imparting the diagnosis and writing a prescription of therapy will generally be done in progressive stages. Many factors must be considered before the treatment of choice is determined. The residential care facility is only one of a number of therapeutic resources that may be necessary for proper treatment of mental retardation. It should be used when therapeutically indicated. Rarely should residential placement be a final treatment resource; it should be utilized only at a point in time when such treatment best meets the needs of the retarded individual and his family.
REFERENCES 1. Bowman, P. W.: Basic Considerations in a Placement Program for the Mentally Retarded. Presentation at the Annual Meeting, American Association on Mental Deficiency, New York City, New York, May, 1962. 2. Davis, C. H., Jr.: The retarded child-What can the physician do? The Virginia Med. Monthly, 87:66, 1960. 3. Dittmann, L.: The family of the child in an institution. Amer. J. Ment. Defic., 66: 759,1962. 4. Gesell, A., and Amatruda, C. S.: Developmental Diagnosis. 2nd edition. New York, Hoeber Medical Division, Harper and Row, Publishers, 1965. 5. The Mentally Retarded: Guidelines for Determining Need for Residential Care. Wisconsin Department of Public Welfare, Division of Mental Hygiene, Madison, Wisconsin, January, 1963.
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6. Mezer, R. R., and Rheingold, P. D.: Mental capacity and incompetency: A psycho-legal problem. Amer. J. Psychiat., 118:827, 1962. 7. Mild Mental Retardation: A Growing Challenge to the Physician. The Committee on Mental Retardation, Group for the Advancement of Psychiatry, Vol. VI, Report No. 66, Mental Health Materials Center, Inc., September, 1967. 8. Nelson, W. E.: Textbook of Pediatrics. 8th edition. Philadelphia, W. B. Saunders Company, 1964. 9. Olshansky, S., and Sternfeld, L.: Attitudes of Some Pediatricians Toward the Institutionalization of Mentally Retarded Children. Institutionalizing Mentally Retarded Children . . . Attitudes of Some Physicians. U. S. Department of Health, Education, and Welfare, Welfare Administration, Children's Bureau, 1963. 10. Pearson, P. H., and Menefee, A. R.: Medical and social management of the mentally retarded. GP, 81:78, 1965. 11. The President's Panel on Mental Retardation: A Proposed Program for National Action to Combat Mental Retardation. Washington, D. C., U. S. Govermnent Printing Office, 1962. 12. Roselle, E. N.: New horizons for the mentally retarded when a state looks at the problem as a whole. Amer. J. Ment. Defic., 59:365, 1955. 13. Scheerenberger, R. C.: A Census of Public and Private Residential Facilities for the Mentally Retarded in the United States and Canada. Directory of Residential Facilities for the Mentally Retarded, American Association on Mental Deficiency, 1965. 14. Tarjan, G., Wright, S. W., Dingman, H. F., and Eyman, M. A.: Natural history of mental deficiency in a state hospital-Selected characteristics of first admissions and their environments. Amer. J. Dis. Child., 101:197, 1961. 15. Yannet, H.: The community management of the mentally retarded. J. Louisiana Med. Soc., 107:291, 1955. 16. Yannet, H.: The community responsibility for the care of the mentally retarded. J. Pediat., 50:397, 1957. Georgia Retardation Center North Peachtree Road and Peeler Road Chamblee, Georgia 30005