Journal Issue: Children with Disabilities Volume 22 Number 1 Spring 2012
Findings of the Issue
At this point a few comments about the individual articles are in order.
The Changing Landscape of Disability in Childhood
In addition to offering a new and forward-looking definition of childhood disability, Neal Halfon, Amy Houtrow, Kandyce Larson, and Paul Newacheck devote serious attention to documenting and interpreting trends in disability. They note that Americans' perceptions of childhood disability have changed dramatically over the past century and that demands and expectations for child functioning have also changed. The authors explore the ways in which all these changes have influenced the risk of poor health and disability and how policies focused on addressing the needs of children with disabilities have evolved over the recent past. They stress the importance of (but lack of progress in) reducing socioeconomic disparities in disability prevalence.
Disability and Health Trajectories over the Life Course
Liam Delaney and James P. Smith compare the lifetime trajectories of individuals with and without disabilities. Because addressing this question requires tracking individuals over time, they devote considerable attention to new retrospective data on a large sample of children and their siblings, which can be used to examine the effects of childhood health conditions on future outcomes. They also note that researchers examining past disability have no choice but to focus on specific conditions in the absence of conceptual definitions along the lines of those proposed in the first article.
Delaney and Smith explore the complex relationship between childhood health and the socioeconomics of adulthood, focusing especially on the long-term effects of mental health problems in childhood. They also examine evidence regarding the efficacy of early mental health treatment for children in terms of promoting good health later in life.
Economic Costs of Childhood Disability
Mark Stabile and Sara Allin provide a comprehensive overview of the literature on the economic costs of disability, together with a conceptual framework to organize their review. The most striking finding of their article is that the medical costs of disability are dwarfed by the costs to families and to the children themselves in terms of things like lost productivity. Moreover, these personal costs translate into costs to society as a whole in terms of lower tax revenues and higher outlays for social programs.
The authors examine evidence about three kinds of costs—direct, out-of-pocket costs incurred as a result of the child's disability; indirect costs, often involving employment, incurred by the family as it decides how best to cope with the disability; and long-term costs associated with the child's future economic performance. These negative effects appear to be much greater, on average, for children with mental health problems than for those with physical disabilities.
Disability and the Education System
In their overview of the treatment of childhood disability within the educational system, Laudan Aron and Pamela Loprest document a dramatic shift from exclusion to inclusion in U.S. law governing the education of children with disabilities. Before passage in 1975 of the Individuals with Disabilities Education Act (IDEA), only one in five children with identified disabilities attended public schools. Of the 3.5 million such children who did attend school, many received little or no effective instruction. By the 2004–05 school year, almost 7 million children were receiving special education services through IDEA.
The special education system has provided not only far better access to public education for students with disabilities, but also an established infrastructure for educating children with disabilities, earlier identification of disabilities in children, and greater inclusion of these children in classrooms with peers without disabilities. Concerns remain, however. Certain groups—African Americans, in particular—may be overrepresented among children identified as having disabilities. Special education students still lag behind their nondisabled peers in educational achievements, are often held to lower expectations, are less likely to take the full academic curriculum in high school, and are more likely to drop out of school. And researchers have conducted far too few rigorous evaluations of the impact of special education programs on children's educational prospects and trajectories.
Disability and Health Insurance
In his survey of how health insurance, or the lack of it, shapes the lives of children with disabilities, Peter Szilagyi concludes, not surprisingly, that children with disabilities fare far better when they are insured. By one estimate, nearly two of every five special needs children are either uninsured or inadequately insured. Compared with these children, those with insurance are more likely to have a primary care provider, to be able to reach a specialist, and to have access to supporting services. They also have fewer unmet medical and oral health care needs and receive care more quickly.
Szilagyi compares benefits provided by private insurance and by public insurance (such as Medicaid) and finds that although public plans offer more comprehensive benefits for special needs children, their lower reimbursement rate tends to make some providers reluctant to take on these patients. He stresses the urgency of providing adequate health insurance to all children with disabilities and of developing a set of best practices in health insurance to cover important services needed by this population.
Disability and Health Care Quality
James Perrin provides an overview of the research on disability and health care quality. He offers an especially informative discussion of the way in which health care quality has been improved through the collaboration of specialized medical settings focusing on specific diseases such as cystic fibrosis. The numbers of patients being treated in any particular medical setting are often too small for practitioners to be able to judge whether a new treatment is effective. Pooling information over a broad network makes it possible for them both to understand more rapidly whether a treatment is working and to make the treatment available to more patients. The most successful networks have focused on improving a child's functionality, which gives them a clear goal and a metric for judging success.
Emerging Technologies and Their Impact on Disability
Paul Wise examines the relationship between technology and childhood disability. He shows how technological change has transformed the nature and functional impacts of child disability, as well as the scale of social disparities in child disability. He discusses the impact of preventive and therapeutic interventions on disability in childhood, access to emerging technologies, and the relationship between technical innovation and the social determinants of health in shaping patterns of child disability.
Technology, says Wise, can reduce or widen social disparities in health care for children with disabilities. As technology enhances the ability of medical professionals to improve health outcomes, access to technology becomes more important. Health outcomes may improve for those who can afford the technology, but not for others. Unless access to technology is provided equitably, technology will likely expand disparities in child outcomes rather than reduce them.
Prevention of Disability
The final article, by Stephen Rauch and Bruce Lanphear, focuses on preventing disability. The heart of their argument is that societal choices can shift the curve of child health outcomes to increase the probability that some children will be moved from a nondisabled to a disabled state. Exposure to chemicals in the environment, for example, may decrease the attentiveness of all children, but in a subset of more vulnerable children, the exposure may lead to symptoms and impairment that warrant an ADHD diagnosis. The implication is that society should pay attention to shifting the entire distribution of health outcomes in a positive direction and that doing so will reduce the toll of childhood disability. Such a public health focus on prevention is a useful complement to the usual medical focus on improving technology or the quality of medical care for children who already have disabilities.