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Although the general public in the United States assumes children to be generally healthy and thriving, a substantial and growing number of children have at least one chronic health condition. Many of these conditions are associated with disabilities and interfere regularly with children's usual activities, such as play or leisure activities, attending school, and engaging in family or community activities. In their most severe forms, such disorders are serious lifelong threats to children's social, emotional well-being and quality of life, and anticipated adult outcomes such as for employment or independent living. However, pinpointing the prevalence of disability among children in the U.S. is difficult, as conceptual frameworks and definitions of disability vary among federal programs that provide services to this population and national surveys, the two primary sources for prevalence data.

Opportunities for Improving Programs and Services for Children with Disabilities provides a comprehensive analysis of health outcomes for school-aged children with disabilities. This report reviews and assesses programs, services, and supports available to these children and their families. It also describes overarching program, service, and treatment goals; examines outreach efforts and utilization rates; identifies what outcomes are measured and how they are reported; and describes what is known about the effectiveness of these programs and services.

Product Details

ISBN-13: 9780309472241
Publisher: National Academies Press
Publication date: 08/06/2018
Pages: 350
Product dimensions: 6.00(w) x 9.00(h) x (d)

Table of Contents

Acronyms And Abbreviations xxiii

Summary 1

1 Introduction 15

Study Charge and Approach 16

Study Scope 19

Definitions 22

Navigating This Report 24

References 27

2 Conceptualizing Childhood Disability 29

Operational Definitions of Disability and Related Concepts 30

Contemporary Conceptual Understanding of Childhood Disability 42

Case Studies 58

Summary 63

References 63

3 Health and Functioning Outcomes for Children with Disabilities 73

Health Outcomes 75

Social and Human Capital Development Outcomes 76

Chapter Conclusions 85

References 87

4 Health Care Programs and Services 91

The Health Care Landscape for Children with Disabilities 92

Specialized Health Care Services and Programs for Children with Disabilities 108

Programs Supporting Access to and Quality of Health Care Services 126

Chapter Conclusions 140

References 142

5 Social and Human Capital Development: School-Based Programs and Services 157

The Educational Landscape for Children with Disabilities 158

Special Education Services for Children with Disabilities 165

School-Based Transition Services 180

Chapter Conclusions 188

References 189

6 Social and Human Capital Development: Programs and Services Outside of the School System 197

Vocational Rehabilitation and Pre-Employment Programs and Services 198

Independent and Integrated Community Living Programs 214

Advocacy Services and Programs 220

Economic Support Programs 226

Chapter Conclusions 230

References 232

7 Conclusions 237

Chapter-Specific Conclusions 238

Characteristics That Contribute to the Effectiveness of Programs and Services 242

Gaps and Limitations 247

Opportunities for Improving the Provision of Services and Supports 260

Opportunities for Improving Data and Research and Informing Decisions About SSA Involvement 268

References 273


A Public Session Agendas 277

B Glossary 283

C Descriptions of Data Sources 287

D Legislation to Support Positive Outcomes for Children with Disabilities 297

E Biographical Sketches of Committee Members 311

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