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Journal Issue: Children with Disabilities Volume 22 Number 1 Spring 2012

The Changing Landscape of Disability in Childhood
Neal Halfon Amy Houtrow Kandyce Larson Paul W. Newacheck

Introduction

Notions of childhood disability have evolved over the past century in concert with changing conceptions of health and illness, in response to changing threats to children's health and development, and in relation to changing demands and expectations for child functioning. While the prevalence of parent-reported childhood disability has been steadily increasing over the past fifty years, the nature, severity, and consequences of disability for a child living in 1960s America are considerably different from those for a child with disability today. Until the 1960s, the iconic image of disability was a child with polio, pictured in leg braces and supported on crutches. If there were a poster child for today, it might be a child with autism. While the girl with polio wore her disability for all the world to see, the boy with autism represents the new and less identifiable face of modern disability, a range of ubiquitous and not as easily recognizable mental health and neurodevelopmental disorders.

All children, especially those living in poverty or with preexisting health conditions, are at risk for having a disability.1 Disability in childhood can result in lifelong health, social, vocational, economic, and psychological impacts.2 Children with disabilities tend to have more extensive health care needs, have greater rates of unmet needs for health and related services, and experience social and environmental barriers to full participation in life events.3 They are at risk for diminished health-related quality of life and for negative psychological and social impacts.4 Their families devote considerable time and effort to providing health-related care, and often experience financial burden, work loss, poor mental and physical health, and negative social consequences.5 For poor children with disabilities and their families, these problems tend to be even greater.6 In addition, communities and health systems are often unable to provide the resources for children with disabilities and their families necessary to achieve optimal health and social outcomes.7

In this article we describe the changing nature of child health and childhood disability. We first address the changing context of childhood, health, and disability; how changing contexts of childhood influence risks for poor health and disability; and how policies focused on addressing the needs of children with disabilities have evolved over the recent past. We then examine the data on childhood disability. Using data from the U.S. National Health Interview Survey, we look at the prevalence of childhood disability and the conditions responsible for impairments, trends in prevalence of chronic conditions associated with childhood disability, and cross-national data comparing U.S. prevalence rates with those of other nations. We interpret our findings, considering explanations for trends that show increasing prevalence and for the changing distribution of childhood disability. We also address the importance of and lack of progress in reducing the social disparities in disability prevalence, as well as the need for better measures, more consistent definitions, better longitudinal data, and greater harmonization of data and data sources across different child-serving agencies and levels of government. After offering a new and forward-looking definition of childhood disability, one that reflects emerging and more developmentally responsive notions of childhood health and disability, we consider the potential for improving the understanding of trends and determinants of childhood disability and its consequences for the nation.