Journal Issue: Children with Disabilities Volume 22 Number 1 Spring 2012
Research and Policy Recommendations
The five themes of the volume that we have highlighted lead naturally to recommendations for researchers and for policy makers. Most important, researchers must pay attention to how disability is defined and develop workable definitions that can be implemented in national surveys and maintained over time. Only in this way can they learn whether the increasing numbers of children with disabilities represent an exploding epidemic or an emerging, more nuanced understanding of what it means to be disabled. (For information on key data sets for children with disabilities and on selected federal programs serving these children, please go to www.futureofchildren.org/futureofchildren/publications/journals. Then click on volume 22, number 1 (2012), and look for Appendixes 1 and 2.)
Second, although understanding trends in disability is scientifically important and helpful in terms of identifying causes of disability, policy makers should be mindful that whether or not the number of special needs children is growing, large numbers of children must live with a diagnosed disability. These children merit attention.
Third, both researchers and policy makers must be aware of, and respond aggressively to, the change in the nature of childhood disability in recent years. Several decades ago the problems that most children with disabilities confronted were physical in nature. Today childhood disability more often involves a mental health disorder—one that often has more severe consequences than many physical health conditions. A key goal for society today is to devote resources to preventing, diagnosing, and managing these conditions to improve children's functioning and trajectories.
Fourth, the fragmented nature of services for children with disabilities places a tremendous burden not only on the children but also on their families, who struggle at great cost to fill the gaps. The concept of a medical home that coordinates care is a useful starting point for policy makers (though far from a reality for many children with disabilities), but it must be expanded to include families and educators as well. Our view is that any policy measure that effectively increases coordination between the home, the doctor's office (or offices), and the school would tremendously improve the lives of children with disabilities, as well as the lives of their families. Moreover, the different programs and services available to children with disabilities must be evaluated to determine whether they effectively promote children's functioning.
In conclusion, both researchers and policy makers must pay more attention to children with disabilities who are also socially disadvantaged because of poverty or discrimination. It is important to know whether these children are being adequately served by the available programs, and whether their outcomes differ from those of other children with disabilities.
One problem highlighted by this review is a relative lack of attention in the research to the special problems of minority and low socioeconomic status children with disabilities. Although poor and minority children are more likely than other children to have disabilities, as emphasized in the opening article by Halfon, Houtrow, Larson, and Newacheck, most research on disparities highlights differences in access to care, but does not go further to consider possible differential impacts of disability on children of different backgrounds. The possibility that minority and low socioeconomic status children with disabilities are at "double jeopardy"—both more likely to have disabilities, and more likely to suffer from a given disability, is one that merits more attention. Similarly it would be useful to look further at whether health care quality improvements for children with disabilities affect minority or disadvantaged children differently than other children (for example, these children might be less likely to receive the latest treatments and might have more difficulty gaining access to specialists to treat them). The article by Wise emphasizes new technology's capacity both to expand and to reduce disparities in child health.
Finally, in this time of budget shortfalls, it is important to keep in mind, as Szilagyi reminds us, that even given the large run-up in the number of children with diagnosed disabilities, caring for children with disabilities still accounts for only about a nickel of every dollar of health care costs as a whole. Thus, as a society our concern with the increasing prevalence of disability should not be primarily about reducing the medical costs of treating disability, but about improving the quality of life for children and their families.