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An explosion of research on families and developmental disabilities occurred during the last two decades of the 20th century and is continuing into the 21st century. The Mental Retardation/Developmental Disabilities Branch of the National Institute of Child Health and Human Development sponsored conferences, workshops, and requests for applications on many aspects of family adjustment. The American Association on Mental Retardation published a special collection of journal articles (Blacher & Baker, 2002) and special issues of the (2003) were devoted to the topic. Driven by the greater likelihood that persons with developmental disabilities (DD) would live longer and with their families, the need for understanding the influence of the family assumed a high priority. This influence was seen as transactional, with attention directed both to understanding the effect of a person with DD on the family, as well as the effect of the family on persons with DD.

Developmental disabilities, including mental retardation (or intellectual disability [ID]), are severe and chronic human conditions that are likely to continue indefinitely (P. L. 104-83, 1996). Although current definitions of mental retardation (American Psychiatric Association, 2000; American Association on Mental Retardation [AAMR], 2002; World Heath Organization, 1993) make no reference to the expected duration of the condition, it is generally accepted that mental retardation is lifelong and “essentially incurable” (Doll, 1941). For the most part, children diagnosed with ID develop into adults with ID. There are no credible reports of spontaneous remission of ID. Rather there is a legacy of failed attempts to raise the intelligence of affected individuals (for reviews, see Spitz, 1986, 1999). With the exception of people who function at the margin between mild mental retardation and borderline intelligence, improvements in intellectual functioning have typically been transient or due to interventions that inadvertently result in “teaching to the test” thereby increasing scores on intellectual assessments (Spitz, 1999, p. 285). Intelligence is a trait that remains remarkably stable over time, especially when scores fall below the average range (Sattler, 2001). This is not to say that cognitive and adaptive functioning cannot improve following interventions.

The purpose of this chapter is to provide a general framework for understanding what early intervention is, what has been proven to work, and what the next steps should be. The first section describes the basics about early intervention—the what, when, why, and how. The second section presents research findings on what has been proven to work, including essential operating principles and key elements of effective early intervention programs. And the third section provides recommendations for future directions for early intervention research and services.

In both principle and practice, early intervention is now a well-established feature of service and support networks for children with documented developmental disabilities in the United States and around the world (Guralnick, 2005). In the United States, the systems nature of early intervention is firmly grounded in legislation, particularly the Education of the Handicapped Act Amendments of 1986 (P.L. 99-457). Over the years, the provisions of this act (now the Individuals with Disabilities Education Act [IDEA]) have been modified and revised in an effort to further strengthen the early intervention system, for example, IDEA Amendments of 1991 (P.L. 102-119) and the reauthorization of IDEA (P.L. l05-17; see Guralnick (1997b; Meisels & Shonkoff, 2000; Smith & McKenna, 1994, for historical accounts of this legislation). Taken together, this legislation actually created two components of an early intervention system: one focusing on infants and toddlers (birth-to-3 years of age; Part C of IDEA) and one addressing the needs of preschool children (3-to-5-year olds; Part B, section 619).

Stereotyped behavior appears to be foremost among the varieties of aberrant behavior exhibited by individuals with mental retardation and autism (Bartak & Rutter, 1976; Bodfish, Symons, Parker, Lewis, 2000; Rojahn, 1986). Stereotyped behavior (STY) and self-injurious behavior (SIB) have been the focus of considerable research and clinical attention over the past several decades. As a result, distinct changes in the conceptualization of the phenomenology, pathogenesis, and treatment of STY and SIB have occurred. Phenomenologically, STY and SIB are no longer viewed as discrete, unrelated forms of aberrant behavior but instead are now viewed as part of the spectrum of abnormal repetitive behavior that is a common feature of neurodevelopmental disorders like mental retardation and autism (Cooper & Dourish, 1990; Lewis & Bodfish, 1998). Also, models of the pathogenesis of STY and SIB have shifted from a dichotomy of “nature” (e.g., brain-based) and “nurture” (e.g., learned, environmentally mediated) to more integrated models of that encompass both biological (e.g., genetic, neurological) and behavioral (e.g., environmental, psychological) factors (Lewis et al., 1996). Finally, treatment models that were based on the early notion of brain versus behavior have now been replaced by more integrated biobehavioral approaches that emphasize the combined role of behavioral/educational interventions and biomedical treatments. These shifts in the conceptualization and treatment of STY and SIB have brought about improved prognoses for persons with mental retardation and autism who display these forms of aberrant behavior.

Over the past three decades, the co-occurrence of psychopathology and intellectual disability (ID) has received a great deal of attention. Little importance was given to this population by mental health professionals prior to that time. However, both researchers and clinicians have recently been changing their priorities with respect to this problem (MacLean, 1993; Matson, Kuhn, & Mayville, 2002). Specifically, greater professional attention has focused on classification issues and conceptual models of psychopathology as they relate to ID. Consequently, more clinicians are being trained to work specifically with this population, thus increasing the number of avenues available to aid individuals with ID who have mental health service needs.

Aggression and related disruptive acts represent the most frequently occurring behavioral challenges of persons with intellectual disabilities (ID) (Eyman & Call, 1977; Jacobson, 1982; Schroeder, Rojahn, & Olenquist, 1991). Even though aggression occurs in a social context and is maintained to a major extent by social contingencies, medical, genetic, psychiatric, neuropsychiatric, and psychological conditions also are reported to represent significant contributing influences (Barnhill, 1999; Gardner, 2002a; Sheard, 1984). As an example, an increased rate of occurrence of aggression has been reported in people with ID who also have a diagnosis of a mental disorder (Borthwick-Duffy, 1994; Jacobson, 1982; Reiss & Rojahn, 1993). Additionally, referrals for mental health services for people with ID typically are initiated by presence of recurring and severe behavioral concerns involving aggression and related disruptive activities (Benson, 1985; Davidson et al., 1994). Whether primarily behavioral, psychological, psychiatric, medical, or genetic, the case formulation model selected to offer direction to diagnostic assessments and related treatment approaches thus should be sufficiently inclusive to address the range of biomedical and psychosocial conditions that may influence the frequency, severity, variability, and persistent recurrence of these acts.

Promoting effective speech, language, and communication is almost always a central issue in the treatment and education of children with mental retardation and other developmental disabilities. The range and severity of the speech–language deficits vary considerably across individuals and across disabilities.

With the passage of the Individuals with Disabilities Education Act (originally titled the Education for All Handicapped Children Act) and the advent of normalization as a guiding philosophical premise and deinstitutionalization as prevalent public policy in the 1970s, monumental changes in the provision of services to individuals with mental retardation and similar developmental disabilities occurred. Importantly, individuals who might have once been placed in large state operated institutions at birth or shortly thereafter remained living at home and began attending public schools. At school, children with mild mental retardation often were exposed to a simplified version of the regular education curriculum (Heward, 1996). Children with more severe retardation were often exposed to a curriculum that was based on normal child development or a readiness model (Wilcox & Bellamy, 1982).Within the developmental model individuals were taught skills in the order in which they emerged in children without disabilities in the belief that those early skills were prerequisite or necessary for the attainment of skills typically learned by children later. Unfortunately, data collected on the postschool outcomes of individuals with disabilities, including mental retardation and related disabilities, revealed that they were not making transitions to adult life successfully (McDonnell, Wilcox, & Hardman, 1991). There were high rates of unemployment, with those who were employed working less than full time.

Impairment in social functioning is an associated feature of intellectual disabilities (ID) and the diagnosis of mental retardation (American Association on Mental Retardation, 2002; American Psychiatric Association, 2000), and is also characteristic of many other developmental disabilities. The National Research Council’s report on mental retardation and the eligibility requirements for social security benefits indicates social skills assessment as a priority (National Research Council, 2002). In particular, social skills deficits are vital to diagnosing individuals within the borderline and mild ranges of ID. For individuals whose cognitive abilities are within the borderline range, the degree of social skills impairment may often represent the difference between dependency and self-sufficiency. Therefore, interventions targeted at decreasing an individual’s vulnerability through social skills development are critical components of any habilitation plan. This chapter reviews recent research on social skills deficits in children with ID, discusses selected studies of social skills training (SST), and identifies priorities for future research in this area.