Workshop on Disability in America A New Look: Summary and Background Papers (2006) / Chapter Skim
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Appendix C Defining and Classifying Disability in Children--Rune J. Simeonsson
Appendix C Defining and Classifying Disability in Children--Rune J. Simeonsson
Pages 67-87
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From page 67... ...
From infancy to adolescence, it is a period marked by dynamic changes in body structures and functions; the acquisition of physical and mental skills; and progressive steps toward independence of movement, thought, and behavior. In contrast to the relatively stable characteristics of the adult, the evolving characteristics of the child represent a moving target, complicating the task of assessing function and distinguishing significant limitations from variations in normal developmental processes.
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From page 68... ...
identify emerging issues to advance the definition, measurement, and classification of disability in childhood. CONCEPTS OF DEVELOPMENT AND DISABILITY Concepts of Atypical Development Although there is no universal standard for defining childhood disability, a number of concepts have framed disability related to atypical development.
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From page 69... ...
Within the framework of Piaget's theory of cognitive development, Inhelder (1966, 1968) advanced a similar concept of an invariant sequence to describe the delayed rate of cognitive development in individuals with mental retardation.
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From page 70... ...
. Central to the concept of the continuum of reproductive casualty was the assumption that the range of outcomes expressed in different manifestations of disability, such as mental retardation, cerebral palsy, and learning disability, reflected the differential effects of complications on common developmental processes (Baum, 1977; Ounsted, 1987)
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From page 71... ...
The concept of caretaking casualty thus extends the continuum of reproductive casualty and defines differences in children with disabilities as developmental expressions of processes occurring in the prenatal period as well as the postnatal period. The Continuum of CNS Dysfunction A third concept advanced to define disability in childhood is the continuum of CNS dysfunction.
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From page 72... ...
Deviancy refers to deviations of a child's abilities from normal values within a certain domain. The dissociation phenomenon refers to discrepancies in level of functioning from one domain to another, for example stronger motor skills but weaker language skills or stronger mental skills but weaker motor skills.
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From page 73... ...
These categories were put in place in 1976 with the establishment of special education under P.L. 94-142 and reflect a medical model because the categories either are diagnosed conditions (e.g., mental retardation, autism, traumatic brain injury [TBI]
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From page 74... ...
However, as the federal government requires the states to report annually on the numbers of students served in special education under these categories, the resulting data do provide estimates of the prevalence of childhood disability. An analysis of ten-year data (www.IDEAdata.org)
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From page 75... ...
draws on the social model in interpreting the nurturing experience of mothers of children newly diagnosed with disabilities. Over time, mothers replaced their problemoriented focus based on the medical model with a social model focused on integration and acceptance of their children.
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(1998) used an epidemiological survey to compare three federal definitions of severe mental illness (one
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They also illustrate the importance of distinguishing between the documentation of underlying health conditions and the documentation of disability defined by the manifestation of functional limitations. CURRENT ISSUES As noted earlier in this paper, there is no common, agreed-upon model of childhood disability.
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From page 78... ...
of school age children, 6 to 21 years of age, who are served in special education based on categorical assignment. The variability of the estimates can be attributed to at least two sources: how disability was defined and the grouping of children by age for analyses.
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Inconsistency in the naming of identified populations is a fourth issue characterizing current policy and practice related to children with disabilities. At the broadest level this issue is reflected in the overlap of populations described by the terms "disability" and "chronic conditions" in prevalence studies.
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From page 80... ...
Thus, the criteria for mental retardation are based on measured intelligence, for traumatic brain injury the focus is on etiology, and for autism the focus is on symptoms consistent with a diagnosis. The criteria used to document learning disabilities in special education have changed over time, with the criteria in the 2004 reauthorization of IDEA reflecting a shift from the documentation of a significant discrepancy between intelligence and achievement to evidence of significant limitations in language use.
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From page 81... ...
The concepts positing a continuum of outcomes attributed to reproductive casualty, caretaking casualty, and CNS dysfunction are consistent with childhood disability expressed as dimensional rather than discrete entities. Furthermore, although the medical model is still pervasive in defining disability through the use of health classifications (ICD-9 and DSM-IV)
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From page 82... ...
The dimensional framework of ICF-CY offers a structure that can be used to define disability in terms of functional limitations in children's performance of activities and participation in major life roles appropriate for their age. Three applications of ICF-CY are proposed below to address the issues on variability in defining childhood disability raised in this paper.
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From page 83... ...
TABLE C-2 Examples of ICF Activities and Participation Codes for Key Indicators Codes for the following age groups Activity 0–2 yr 3–5 yr 6–11 yr 12–17 yr Mobility d420, d455, moving d470, using d470, using transferring around transportation transportation oneself Communication d315, receiving d330, speaking d350, D355, discussion nonverbal messages conversation Self-care d550, eating d530, toileting d540, dressing d570, looking after ones health Learning d120, other d140, learning d175, solving d177, making decisions purposeful sensing to read problems Social d7601, child- d710, basic d750, informal d740, formal relationships interactions parent relationships interpersonal social relationships relationships xx 83
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From page 84... ...
The adoption of a common qualifier for severity is important to enhance the comparability of data gathered in different surveys. It should also improve correspondence of survey data with documentation provided in the context of systems such as, health services, social security and special education.
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From page 85... ...
. Measuring chronic health condition and disability as distinct concepts in national surveys of school-aged children in Canada: a comprehen sive review with recommendations based on the ICD-10 and ICF.
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. Applying the International Classification of Functioning Disability and Health to mea sure childhood disability.
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From page 87... ...
. International Classification of Functioning, Dis ability and Health.
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