Pediatric Annals

The Pediatrician's Role

Leon Sternfeld, MD, PhD, MS

Abstract

There are two complaints that parents of developmentally disabled children frequently voice about primary-care physicians. The first occurs when the newborn infant has a condition that obviously will result in delayed development - for example, Down's syndrome. The second complaint is that primary-care physicians postpone unnecessarily a discussion with the parents about the possibility of a delay in the child's development.

THE CASE AGAINST INSTITUTIONALIZATION

In too many instances the primary-care physician will advise the parents of a child with cerebral palsy to institutionalize their baby, even if the family is able and eager to retain the child within its own household. In recent years, there has been considerable progress in lengthening the life span of developmentally disabled children, including those with Down's syndrome, as well as in improving their functional development during the preschool and school years.

The Bureau of Education in the U.S. Office of Education has supported a number of projects and demonstrations, most notably those involving young children with Down's syndrome, conducted at the University of Washington1 and in Portage, Wis.2 The results of these and other studies should be noted by primary-care physicians - namely, that most, if not all, children with developmental disabilities will do better in their own homes (or foster homes) than they will in an institutional setting, even in institutions with many fewer beds than state (or private) residential facilities.

The movement towards deinstitutionalization of children and adults with severe emotional, mental, and physical handicaps has gained impetus during this decade. An important contributing factor in this movement was Bowlby's pioneering studies3 in orphanages in Great Britain, which showed conclusively the harmful effects, in terms of the infant's marked delay in development, that are caused by separating an infant from its mother. This finding resulted is some physicians' changing their attitudes toward early institutionalization. Another tactor leading towards deinstitutionalization was the class-action suits that resulted in judicial decisions requiring the governmental agencies responsible for the institutions to improve the extent and quality of the services that are provided for those of their residents who might profit from an active program of treatment and management within the institution. It is also recognized now that patients who could care for themselves or could live together in small groups should be placed in appropriate living environments outside the institution. A relatively small number of children with developmental disabilities will always require institutionalization. In such instances, it is difficult, if not impossible, for the physician to find an institution appropriate to the needs of the child that is within the financial ability of most families.

Since 1969 there has been an Accreditation Council for Services for Mentally Retarded and Other Developmentally Disabled within the framework of the Joint Commission on Accreditation of Hospitals. This Council consists of some 11 professional-provider (viz. the American Academy of Pediatrics) and consumer (viz. United Cerebral Palsy Associations) organizations. The most recent edition of the standards for institutions and community agencies4 provides a manual and guidelines for achieving high-quality services. A fundamental principle underlying the standards is that the primary mission of an agency serving developmentally disabled persons must be to provide and promote services that will enhance the person's development and maximize his achievement of self-determination and autonomy. Accreditation of an agency is assurance to both physicians and families that the agency's services are among the best available.

EARLY IDENTIFICATION AND INTERVENTION

The second frequent complaint of parents of children with cerebral palsy is that primary-care physicians postpone discussing with them the possibility of a delay in their children's development. In many instances, the mother who suspects that her…

There are two complaints that parents of developmentally disabled children frequently voice about primary-care physicians. The first occurs when the newborn infant has a condition that obviously will result in delayed development - for example, Down's syndrome. The second complaint is that primary-care physicians postpone unnecessarily a discussion with the parents about the possibility of a delay in the child's development.

THE CASE AGAINST INSTITUTIONALIZATION

In too many instances the primary-care physician will advise the parents of a child with cerebral palsy to institutionalize their baby, even if the family is able and eager to retain the child within its own household. In recent years, there has been considerable progress in lengthening the life span of developmentally disabled children, including those with Down's syndrome, as well as in improving their functional development during the preschool and school years.

The Bureau of Education in the U.S. Office of Education has supported a number of projects and demonstrations, most notably those involving young children with Down's syndrome, conducted at the University of Washington1 and in Portage, Wis.2 The results of these and other studies should be noted by primary-care physicians - namely, that most, if not all, children with developmental disabilities will do better in their own homes (or foster homes) than they will in an institutional setting, even in institutions with many fewer beds than state (or private) residential facilities.

The movement towards deinstitutionalization of children and adults with severe emotional, mental, and physical handicaps has gained impetus during this decade. An important contributing factor in this movement was Bowlby's pioneering studies3 in orphanages in Great Britain, which showed conclusively the harmful effects, in terms of the infant's marked delay in development, that are caused by separating an infant from its mother. This finding resulted is some physicians' changing their attitudes toward early institutionalization. Another tactor leading towards deinstitutionalization was the class-action suits that resulted in judicial decisions requiring the governmental agencies responsible for the institutions to improve the extent and quality of the services that are provided for those of their residents who might profit from an active program of treatment and management within the institution. It is also recognized now that patients who could care for themselves or could live together in small groups should be placed in appropriate living environments outside the institution. A relatively small number of children with developmental disabilities will always require institutionalization. In such instances, it is difficult, if not impossible, for the physician to find an institution appropriate to the needs of the child that is within the financial ability of most families.

Since 1969 there has been an Accreditation Council for Services for Mentally Retarded and Other Developmentally Disabled within the framework of the Joint Commission on Accreditation of Hospitals. This Council consists of some 11 professional-provider (viz. the American Academy of Pediatrics) and consumer (viz. United Cerebral Palsy Associations) organizations. The most recent edition of the standards for institutions and community agencies4 provides a manual and guidelines for achieving high-quality services. A fundamental principle underlying the standards is that the primary mission of an agency serving developmentally disabled persons must be to provide and promote services that will enhance the person's development and maximize his achievement of self-determination and autonomy. Accreditation of an agency is assurance to both physicians and families that the agency's services are among the best available.

EARLY IDENTIFICATION AND INTERVENTION

The second frequent complaint of parents of children with cerebral palsy is that primary-care physicians postpone discussing with them the possibility of a delay in their children's development. In many instances, the mother who suspects that her baby is not developing normally and voices her suspicions to the physician is told that the range of normal development is broad and that she should wait and see. This "wait and see" admonition can be frustrating to parents, and in too many instances results in their "shopping around" among physicians in an attempt to obtain more definitive answers.

The role of the physician in such situations is a difficult one. Certainly one does not wish to arouse undue anxiety in the family if the child is developing normally, albeit more slowly than is usual. However, if there is a question about the course of the child's development, the physician now has available to him some newer techniques for examining young babies5"9 - even newborns - that can provide clues to the possibility of a developmental delay, so that even if a definite diagnosis cannot be made until the child is six months or older, a suspicion can be well enough substantiated so that earlier identification and intervention are possible.10,11

THE DEVELOPMENTAL APPROACH

Obviously, pediatricians have some knowledge about growth and development. Paradoxically, the clinical interests of such physicians appear to be concentrated on the diagnosis and treatment of acute conditions and on providing periodic health supervision of the well child. The child with cerebral palsy needs these services as well as additional medical care and health supervision and a host of other services that the nonhandicapped child generally does not require.

Almost all developmentally delayed children do grow and develop even though the rate of their development is slower than normal. Furthermore, development occurs in this group of children, as in nonhandicapped children, in several interrelated areas: physical, emotional, social, and cognitive. Inasmuch as developmentally delayed children, such as those with cerebral palsy, will have this condition for all of their lives, the approach to their care must be to provide a management or individual program plan. Such a plan encompasses the various areas of development at any given time and should be designed to improve the child's functioning to the utmost allowed by the degree and extent of the disability. This is what is meant by the developmental approach; it is not an alternative to a medical, educational, or psychosocial approach but, rather, a synthesis of all of them - an approach that produces a synergistic effect both useful and efficacious.

In order for the developmental approach to be used effectively, two basic characteristics must be present. There must be an interdisciplinary approach to the child. And the services provided must be furnished within an environment that is as normal as it possibly can be.

The interdisciplinary process (and its extension, the transdisciplinary process) has been the subject of a great deal of literature stressing the need for professional persons in addition to physicians to be involved in the treatment and management of persons with disabilities that are likely to be of long (possible lifelong) duration. Traditionally, the physician always practiced in a unidisciplinary manner. But, with the increased medical specialization of the 20th century, and the increased sophistication in laboratory tests and other diagnostic aids, there has been a growing tendency for the development of a multidisciplinary approach to medical problems.

In the multidisciplinary approach, the primary attending physician synthesizes all of the information and data supplied by consultants, therapists, laboratory, x-rays, nursing, and social work reports and determines the appropriate treatment and management plan. Even further integration of professional competencies is achieved by the interdisciplinary approach, whereby each professional participant, using his or her skills, competencies, insights, and perspectives provided by training and experience, focuses on the developmental needs of the patient. The group as a whole devises appropriate ways of meeting these needs without the constraints imposed by assigning particular domains of behavior and development to particular disciplines only. Participants share all information and specific recommendations, and the entire group develops a single, integrated treatment and management plan to meet the individual's specific identified needs.

The transdisciplinary approach is an extension of the interdisciplinary.1- With this approach, one or two members of the interdisciplinary team, not necessarily the physician, serve as facilitators or coordinators. Other members of the group share their specialized professional skills with the facilitator(s). They, thus, release their role of intervention while maintaining their professional accountability.

The above may seem somewhat strange to primary-care physicians, but a moment's reflection will indicate that many physicians do in fact use all of these approaches at selected times with specific patients. In dealing with children who have a developmental disability, the physician must use the inter- or transdisciplinary approach if his knowledge, skills, and intervention are to achieve the optimum potential. Furthermore, the consistent and deliberate use of these approaches will produce beneficial results, which in themselves will act as stimuli for continued interest and participation by the physician.

Normalization of environment requires making available to developmentally disabled persons conditions of everyday living that are as similar as possible to those of the entire population. This factor (at times referred to as "the least-restrictive environment") means that developmentally disabled persons should enjoy a normal manner of living. Any intervention should be the least intrusive and least disruptive of the person's life and represent the least possible departure from normal patterns of living. To most physicians, hospitals and similar institutions are very familiar and represent a "normal" part of their professional lives. To most other persons, this is not the situation, and physicians must be aware of and sensitive to the "abnormality" of institutional living.

When situations arise where the person must be in an alternative living arrangement, specific attention is needed to make the arrangement as close to normal as is feasible. This includes maintenance of the normal diurnal rhythm with respect to waking, dressing, participation in educational work and play activities, eating of meals, and sleeping. This may seem obvious and mundane, but the fact is that too many developmentally disabled persons in this day and age in the United States are still residing in abnormal environments.

COMMUNITY RESOURCES: COORDINATION, COUNSELING

The pediatrician providing services to children with developmental disabilities has an additional responsibility towards the family. The complexity of the many services that are needed by these children over a long period makes it imperative that a professional person act in a coordinating and advisory role, and the physician should be able to fulfill this role or be assured that another professional colleague - for example, a home service worker, public health nurse, or special educator - will do so.

In many of the larger metropolitan areas there are major assessment and treatment centers to which physicians can refer a developmentally disabled child. However, under no circumstances should the pediatrician abrogate his responsibility to the child and the child's family of acting as a coordinator, counselor, and health maintenance provider. Seldom, if ever, is the primary-care physician able to provide more than medical care and health maintenance for the child and a certain amount of parental counseling and guidance. Members of other disciplines must provide the other needed services. Also, if the patient is a developmentally delayed adolescent, counseling and guidance in the area of human sexuality are of great importance.

Because so many other services are needed, the pediatrician has a particular responsibility to know about the major community resources that provide services to children with developmental disabilities and to use these resources on behalf of his patients in the most appropriate fashion. Many communities have recently compiled annotated inventories of the "human service agencies," and, where these are available, they can be used judiciously by the physician. Local and state health, welfare, education, rehabilitation, mental health, and retardation agencies are governmental sources for services.13,14 United Funds, social agencies, and local chapters or affiliates of national voluntary health agencies are some of the sources in the nongovernmental sector. Such professional organizations as the American Academy of Pediatrics and the American Academy for Cerebral Palsy and Developmental Medicine also have information available to answer physicians' inquiries.

All too frequently, confrontations have occurred between physicians and parents in relation to their developmentally disabled children. Physicians can get interesting and meaningful insights from a recent publication15 of a collection of articles by professionals who are themselves parents of developmentally disabled children. Significantly, the professionals strongly confirm what many parents have always known - namely, how their own lives have been strengthened and enriched by working with and living with handicapped children.

In some societies and cultures less developed than ours, a developmentally disabled child is considered to be one that should be especially cherished and taken care of. In our advanced society, with its highly developed technology, compassion and a sense of responsibility are scarce commodities. Physicians, however, do have both of these qualities highly developed, and, therefore, it is they who are turned to, inevitably, by families who have a child with a developmental disability. The hope is that in the future more families will consider that their primary-care physicians have been really helpful to them.

BIBLIOGRAPHY

1. Hayden, A. H., et al. Early and continuous intervention strategies for severely handicapped infants and very young children. In Haring, N. G., and Brown, L. J. (eds.). Teaching the Severely Handicapped. New York: Grune and Stratton, 1976, pp. 239-276.

2. Shearer, M. S., and Shearer, D. E. The Portage Projects: A Model for Early Childhood Education. Exceptional Children. Washington, D. C: U.S. Office of Education, Administration for Children, Youth, and Families, 1972, pp. 210-217.

3. Bowlby, J. Maternal Care and Mental Health. WHO monograph series No. 2, Volume 3. Geneva: World Health Organization, 1951.

4. Joint Commission on Accreditation of Hospitals: Standards for Services for Developmentally Disabled Individuals. Chicago: Joint Commission on Accreditation of Hospitals, 1977.

5. Haynes, U. A Developmental Approach to Casefinding, with Special Reference to Cerebral Palsy, Mental Retardation, and Mental Disorders. H. E. W. Publication No. 77-5210. Washington, D.C.: U.S. Government Printing Office, 1977.

6. Scherzer, A. L. The Infant with Cerebral Palsy: An Approach to Identification, Management, and Treatment. Roosevelt, N. Y.: United Cerebral Palsy Foundation of Nassau County, 1974.

7. Prechtl. H. The Neurological Examination of the Full-Term Newborn Infant, Second Edition. Clinics in Developmental Medicine No. 63. Philadelphia: J. B. Lippincott Co., 1977.

8. Brazelton, T. B., Parker, W. B., and Zuckerman, B. Importance of behavioral assessment of the neonate. Curr. Probi. Pediatr. 7 (December, 1976) 21-82.

9. Capute, A. J., and Accardo, P. J. Primitive Reflex Profile. Baltimore: University Park Press, 1978.

10. Taft, L. T. Early recognition of cerebral palsy. Pediatr. Ann. 2 (December, 1973), 37.

11. Haynes, U., (ed.). Programming for Atypical Infants and Their Families. New York United Cerebral Palsy Association, 1974.

12. Patterson, G. (ed.). Staff Development Handbook: A Resource for the Transdisciplinary Process. New York: United Cerebral Palsy Association, 1976.

13. U.S. Department of Health, Education, and Welfare. Federal Assistance for Programs Serving the Handicapped. Washington, DC. U.S. Government Printing Office, 1978.

14. Litvin, M., et al. Guide to Federal Resources for the Developmentally Disabled. Federal Programs Information and Assistance Project. Washington, D.C.: U.S. Government Printing Office, 1977.

15. Turnbull, A. P., and Turnbull, H. R. Parents Speak Out: Views from the Other Side of the Two-Way Mirror. Columbus, Ohio: Charles E. Merrill Publishing Co., 1978.

10.3928/0090-4481-19791001-05

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