Social workers' awareness of and formal involvement in family-centered early intervention for infants and toddlers who are at risk of or who have developmental disabilities has increased considerably during the past 15 years. The functional role that social workers can play on early intervention teams and as coordinators of early intervention services is underscored by the formal recognition of the discipline in the Individuals with Disabilities Education Act. Despite the relevance of social work to early intervention, personnel often enter early intervention practice without the benefit of formal preparation related to very young children with developmental disabilities. This article provides an overview of the definition and identification of developmental disabilities, and discusses the role of and challenges to social work in early intervention.
social work roles
The enactment of the Education of the Handicapped Act Amendments of 1986 (P.L. 99-457) marked the be ginning of mandated family-centered services for young children who are at risk of or who have identified developmental disabilities. Part H of this landmark legislation (now Part C of the Individuals with Disabilities Education Act (IDEA) [P.L. 90-247]) challenged a hereto-fore child-oriented service system to consider the needs of the child in the context of the family. This legislation also challenged all professionals who work with children and families to increase their awareness of and competence in the principles underlying family-centered early intervention for infants and toddlers who are at risk of or who have identified developmental disabilities. Not only is social work one discipline formally acknowledged in the federal legislation, but by virtue of the ascribed role of social work in health and human services, social work is a logical discipline for providing family-centered services to families of children with developmental disabilities. Effective practice in early intervention, however, is a function of a philosophy and skill base that is different from that developed through traditional social work training.
DEFINITION AND IDENTIFICATION OF DEVELOPMENTAL DISABILITIES AND CONCERNS
Attention to the special social and educational needs of people with developmental disabilities can be tracked back to France in the late 18th through the 19th centuries and the work of pioneers such as Itard, Sequin, and Benet. This movement found an audience in the United States in the early 20th century with the work of Sequin, Goddard, and Terman. The concept of "developmental disability" (addressed hereafter as "developmental concerns") was formally introduced into the health and human service system by the Developmental Disabilities Services and Facilities Construction Amendments of 1970 (Breen & Richmond, 1979; Ehlers, Prothero, & Langone, 1982). The use of developmental disability represented a refinement of earlier terminology, a progressive shift in attitudes toward people with developmental concerns, and a focus on younger individuals. The 1970 definition of developmental disability reflected a historically clinical and categorical perspective and the description of developmental concerns as a grou p of conditions that are chronic, have a neurodevelopmental origin, and substantively influence an individual's functional abilities (Crocker, 1989). Under the law, developmental disabilities were categorically defined as mental retardation, cerebral palsy, epilepsy, or other neurological conditions that could be closely related to mental retardation. Other conditions could include, but were not be limited to, sensory impairment (for example, deafness), autism, pervasive developmental disorders, attention deficit disorder, syndromes of multiple congenital anomalies, and learning disabilities. This definition reflected the historically held focus on individuals, mental retardation, and categorical labels.
Through an evolution of thought in the health and human services field about developmental concerns and the passing, reauthorization, and amendment of key legislation (principally the Developmental Disabilities Assistance and Bill of Rights Act, P.L. 88-164), we have moved to a definition of developmental disabilities that is inclusive of any number of conditions oriented to functional abilities and sensitive to family issues. More specifically, the Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1999 define the concept of "young children with developmental concerns" in more functional terms to mean children from birth to five years of age who have a substantial developmental delay or specific congenital or acquired condition that will likely result in substantial functional limitations in three or more major life activities, including self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency if services are not provided. Early intervention services are defined in the act to mean services provided to an infant, toddler, young child, and his or her family with the intention of enhancing that child's development, minimizing the potential for developmental delay, and enhancing the capacity of the family to meet the special needs of the child. The current authorization of IDEA expands the definition offered by the Developmental Disabilities Assistance and Bill of Rights Act. Under Part C of this law, infants and toddlers with disabilities means children under age three who need early intervention services because they are either experiencing delays in cognitive, physical, communicative, social or emotional, or adaptive development or have a diagnosed physical or mental condition that has a high probability of resulting in developmental delay. Delays must be determined using appropriate diagnostic instruments and procedures.
Although the etiology of the conditions that result in developmental concerns experienced by many children are readily identifiable, for many children, no clear etiology can be diagnosed. This distinction is critical in that many of the delays experienced and demonstrated by infants and toddlers are not easily explained, and any attempt to discuss a prognosis is limited. Attempts to address the individual child's needs may be confounded by their life situation (for example, homelessness, child abuse or neglect, unmarried or teenage mother, poverty, or lack of medical, nutritional, and early-learning resources). The inclusion, under the definition, of children who are at risk of delays can add significantly to the caseload carried by social workers. Furthermore, the latest federal mandates clearly highlight the need for a consideration of families and a comprehensive and coordinated system of services and supports that are multi- and interdisciplinary in character. These issues present a great challenge to so cial workers in terms of professional competence, the complexity of identifying individual and family needs, designing individualized family services and supports, and the logistics of addressing individual and family needs through the implementation of those services and supports.
Identification of Developmental Concerns
Developmental concerns experienced by children can challenge typical development in the key domains: cognition, social and emotional growth, language and communication, and physical growth and skill. These concerns may be due to inherited genetic influences, environmental influences (or a combination of genetic and environmental factors) and have their genesis during the prenatal, perinatal, or postnatal period. Information about various developmental concerns can be found in Capute and Accardo (1996), Batshaw (1997,1998), Blackman (1999), and Coleman (1993). Examples of genetically based concerns include Down's syndrome, Fragile X syndrome, phenylketonuria (PKU), and Tay-Sachs disease. Environmentally based concerns include encephalitis, meningitis, rubella (German measles), fetal alcohol syndrome, lead poisoning, poor nutrition, and child abuse. A host of individual and cultural-familial factors are associated with environmentally based concerns such as parental educational level, family history and pattern s of parent--child interaction. The pattern of risk to children posed by the unique combination of the array of environmental, and possible genetic, factors underscores the complexity of developing appropriate family-centered services and supports. Indeed, it is important to understand the transactional and ecological nature of child and family factors when designing interventions intended to effect positive outcomes.
Although children can experience initial insult to their development at anytime, the prenatal period is particularly critical to a child's healthy development (Crocker, 1989). Insult during the prenatal period results in a disruption of the actual structural development of the brain and organ systems. During the prenatal period factors such as heredity, chromosomal alteration, abnormal organ development, or maternal ingestion of chemicals and medications can result in a variety of developmental concerns (for example, PKU, Down's syndrome, spina bifida, and fetal alcohol syndrome). Maternal disease conditions include chronic renal disease, diabetes, toxemia, and Rh incompatibility (for example, mother Rh negative and fetus Rh positive). Direct damage to the fetus may include infection, radiation, drugs and chemicals, genetic defects, and metabolic errors (inborn errors in metabolism) (Blackman, 1999; Batshaw, 1997, 1998; Capute & Accardo, 1996).
Perinatal influences are thought to account for 10 percent to 15 percent of diagnosed developmental concerns. Insults that are experienced by the child during the time of labor and delivery may include a disruption of the transmission of oxygen and other nutrients to the brain...