This issue of The Future of Children explores childhood disability—its prevalence, nature, treatment, and consequences. With unprecedented numbers of U.S. children now being identified as having special medical and educational needs and with the nation's resources for addressing those needs increasingly constrained, the topic is timely.
Public discussion of childhood disability, by the media, parents, scholars, and advocates alike, tends to emphasize particular causes of disability, such as autism, asthma, cystic fibrosis, or attention-deficit/hyperactivity disorder (ADHD). In this volume, however, we focus not on individual disabilities, but rather on cross-cutting themes that apply more broadly to the issue of children with disabilities.
To this end, we commissioned a group of experts to review research on childhood disability, including its definition (itself a challenge), its prevalence and trends over time (likewise), and the costs it imposes both on the individual child and on the child's family. Our contributors also consider disability within the context of the nation's educational, health insurance, and medical systems; the impact of emerging technologies on the experience of disability; and the definition of health care quality. The volume concludes with a discussion of the prevention of childhood disability.
Themes of the Volume
Out of the research presented in this volume, five broad themes emerge. These themes are related to defining and measuring disability; trends in disability; the growing importance of mental relative to physical health; the importance of families; and the fragmentation of services for children with disabilities.
Defining Disability and Other Measurement Issues
First, it is remarkably difficult to point to a consensus definition of disability. In the opening article of the issue Neal Halfon and Kandyce Larson, both of the University of California-Los Angeles, and Paul Newacheck and Amy Houtrow, both of the University of California-San Francisco, make the case for a definition that highlights the relationship between health, functioning, and the environment. Specifically, the authors propose that a disability be defined as "an environmentally contextualized health-related limitation in a child's existing or emergent capacity to perform developmentally appropriate activities and participate, as desired, in society." [End Page 3]
Defining disability as a limitation rather than a health condition per se highlights the social and technological context of the individual. In a world with electric wheelchairs, for example, a child with impaired mobility will be less disabled than he or she would be otherwise. It follows then that home and school environments can shape disability and that new technologies can either mitigate or exacerbate disability, as Paul Wise, of Stanford University, discusses in his article on the role of technology. The definition proposed by Halfon, Houtrow, Larson, and Newacheck also emphasizes that disability exists along a continuum and varies across children's ages and functional domains.
Until now empirical work on the prevalence of childhood disability has been based on a variety of simpler and more concrete definitions. National surveys that collect information about childhood disabilities, for example, generally ask questions about limitations on activities of daily living; they also usually classify children as disabled if they are receiving services for their limitations. Although the logic behind this latter definition is apparent, it can mean that the number of children counted as having disabilities may expand or contract along with the provision of services. In a similarly problematic way, expanding the number of children with disabilities who are covered by insurance may increase the number of children who have been diagnosed with a particular condition without actually changing the number who suffer from the condition. Many studies reviewed by contributors to this volume, such as those discussed in the articles by Liam Delaney, of University College Dublin, and James P. Smith, of RAND, and by Mark Stabile and Sara Allin, both of the University of Toronto, take into account only the presence or absence of specific health conditions, making that alone the measure of disability. Research based on historical data (which analysts use to examine disability over the life course) consists almost entirely of information about the presence or absence of specific conditions. Clearly, there is little uniformity across time...