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Workshop on Disability in America: A New Look - Summary and Background Papers (2006)
Board on Health Sciences Policy (HSP)

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. "Appendix C Defining and Classifying Disability in Children--Rune J. Simeonsson." Workshop on Disability in America: A New Look - Summary and Background Papers. Washington, DC: The National Academies Press, 2006.

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Workshop on Disability in america A new look: Summary and background papers

gies, but variability in the nature and rate of development continues to be a source of confounding in the identification of disability (Simeonsson and Rosenthal, 2001). The lack of theory and the lack of consistent concepts of disability in childhood have resulted in identification and classification approaches that have been idiosyncratic to disciplines or service systems and taken the form of diagnoses, syndromes, or categories.

Although the definition and classification of disability in children are issues of current significance, they are not new problems. Concerns about diagnoses, categorical assignment, and the associated labeling of children with disabilities prompted a request for a coherent classification system in the early 1970s by then Secretary of Health, Education and Welfare Elliot Richardson (Hobbs, 1975a). In addition to the problem of labeling and its impact on children, the task of the project was also to address the inappropriate use of psychometric instruments and classification practices in the determination of disability in children from minority groups. The project resulted in two publications, with the first, Issues in the Classification of Children (Hobbs, 1975a), summarizing problems and challenges. In the second book, The Futures of Children, Hobbs (1975b) recommended a functional basis for the classification of children’s disabilities. The functional approach recommended by Hobbs was not realized, and the categorical basis for determining the eligibility of children for funding and services continues to raise concerns in the context of fragmented and incomplete services (Hughes et al., 1996; Newacheck et al., 1998).

Although the terminology for the concerns defined in the 1970s may have changed, many of the problems raised at that time remain the same today, requiring revisiting of the identification and the classification issues three decades later. The purpose of this paper is to (1) review concepts of development and disability; (2) present models and representative data on childhood disability; (3) describe current issues; and (4) 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. In reviewing the research on different outcomes for children who have experienced significant developmental risk factors, Sameroff and Chandler (1975) described main-effect, interactional, and transactional models to capture the evolving findings on the roles of biological and environmental factors in child development. In the main-effect model, a nurturist view

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Front Matter (R1-R16)
Introduction (1-3)
Summary of Workshop Presentations and Discussions (4-38)
Appendix A Workshop Agenda and Participants (39-49)
Appendix B Conceptual Models of Disability: Past, Present, and Future--Gale Whiteneck (50-66)
Appendix C Defining and Classifying Disability in Children--Rune J. Simeonsson (67-87)
Appendix D How Does the Environment Influence Disability? Examining the Evidence--Julie J. Keysor (88-100)
Appendix E Late-Life Disability Trends: An Overview of Current Evidence--Vicki A. Freedman (101-112)
Appendix F Chronic Disease and Trends in Severe Disability in Working-Age Populations--Jay Bhattacharya, Kavita Choudhry, and Darius Lakdawalla (113-142)
Appendix G Trends in Disability in Early Life--Ruth E. K. Stein (143-156)
Appendix H Aspects of Disability Across the Life Span: Risk Factors for Disability in Late Life--Jack M. Guralnik (157-165)
Appendix I Health Care Transition of Adolescents and Young Adults with Disabilities and Special Health Care Needs: New Perspectives--John Reiss and Robert Gibson (166-184)
Appendix J Secondary Conditions and Disability--Margaret A. Turk (185-193)
Appendix K A User’s Perspective on Midlife (Ages 18 to 65) Aging with Disability--June Isaacson Kailes (194-204)
Appendix L Impact of Exercise on Targeted Secondary Conditions--James H. Rimmer and Swati S. Shenoy (205-221)
Appendix M Secondary Conditions with Spinal Cord Injury--William A. Bauman (222-233)
Appendix N Depression as a Secondary Condition in People with Disabilities-Bryan Kemp (234-250)
Appendix O Promoting Health and Preventing Secondary Conditions Among Adults with Developmental Disabilities--Tom Seekins, Meg Traci, Donna Bainbridge, Kathy Humphries, Nancy Cunningham, Rod Brod, and James Sherman (251-264)
Appendix P Biographical Sketches of Workshop Committee and Workshop Presenters (265-276)