Study Takes International Perspective on How Disabled Children Affect Families

by Deborah Baum

It is a challenge for millions of American families – raising a child with a disability. According to the National Health Interview Survey on Disability, an estimated 6.1-million school-age children in the United States (12.3 percent) have some sort of functional limitation in mobility, self-care, communication or the ability to learn.

In eight years of researching this area, sociologist Dennis Hogan has found that the stress, time, and financial burden of raising a special-needs child are likely to alter circumstances within a family. He says parents often face balancing work with caretaking, tight budgets, and strained relationships. Even siblings can be disadvantaged.

Hogan has conducted extensive research on how exceptional children affect families in the United States. But he was curious: To what extent were these results the consequences of American policy practices? Are families similarly affected in other countries?

To address that question, Hogan is now leading an interdisciplinary team of researchers from the Population Studies and Training Center in an innovative international pilot study to research the various impacts special-needs children have on their families. The comparative study, entitled "Exceptional Children-Exceptional Challenges," is the first project focused on the social sciences to receive seed funding from the Office of the Vice President for Research. Collaborating with Hogan are Assistant Professor of Economics Anna Aizer; Associate Professors of Sociology Patrick Heller and Susan Short; Michael E. Msall, professor of pediatrics at the Pritzker School of Medicine, University of Chicago; and Peter D. Brandon, professor of demography and sociology at Australian National University.

Backed by the grant of nearly $82,000, the team will spend the next year undertaking preliminary research and intensive planning for studies that assess the prevalence and types of child disability, how families cope with the challenges of raising exceptional children, and how public policies at the state and national level affect these families.

"Practically, given the substantial number of families with an exceptional child, a better understanding of the strategies these families use to raise their children and manage home life, as well as how policies and societal institutions facilitate or undermine their efforts, is important," Short said.

In the past decade, several dozen countries have started studies that track between 6,000 and 100,000 children from birth through the first several years of life to detect developmental delays and disabilities. These studies gather extensive information about the situations of families, including maternal work, child care, family income, and any special assistance given to families. Such longitudinal data is "essential to disentangling causal relations," Hogan says.

The team is starting with a comparative analysis of the United States and Australia, which they hope will demonstrate the feasibility of a larger study that will compare countries. Hogan is spending the fall semester on sabbatical at Australian National University, where he and Brandon will focus on examining the country's "variations in public support for child care, welfare-to-work programs, and programs for children with disabilities." The research team also is seeking funds from the National Institutes of Health to extend this demonstration study to include England and Scotland.

The team aims to expand the study to include Canada, Finland, and Denmark, which have ongoing studies. France, Germany, Ireland, and New Zealand are just starting new studies and will have data available within the next two years. Using these studies, the Brown team will apply for a Program Project grant from the National Institutes of Health by 2008 for additional years of research support. This will involve analyzing the data already collected, and collecting additional standardized data designed especially for this research.

One challenge in international research is figuring out how to compare the countries effectively. Aiser and Short are developing ideas about what statistical approach should be taken, while Heller is focusing on selecting cases for comparative analysis.

That data will eventually be used to make policy recommendations in areas such as employment law, insurance policy, welfare, and medical services and community care for children with disabilities.

"Understanding how the process of raising exceptional children differs across countries, in terms of policy, is important in making recommendations on what kinds of improvements would be the most effective and what measures would help the most," Hogan said. "You've got to know what works, and what doesn't. That's what we're hoping to find out."