New federally funded research on child disability aims to affect policy

A five-year, $1.6-million study of child disability will draw on the experiences of Rhode Island families to strengthen questions on surveys mandated by the Americans with Disabilities Act.

PROVIDENCE, R.I. -- Brown University researchers have received a grant from the National Institute of Child Health and Human Development (NICHD) to study the effects on Rhode Island families of raising a disabled child and to determine whether government surveys gauge those effects, and the disabilities themselves, accurately.

The five-year project is the first opportunity to assess whether surveys mandated by the Americans with Disabilities Act of 1990 gather accurate results, said Dennis P. Hogan, lead investigator and director of the Population Studies and Training Center at Brown University. Researchers will receive an initial $389,000 award April 1 and expect to receive an additional $1.3 million from various funding sources to complete the project in five years.

"We want to find out if the survey questions are sensitive enough," said Hogan. "If they aren't working, we can make recommendations to the government about questions they can put on their surveys."

As part of the study, about 90 Rhode Island parents - some parents of disabled children and others not - will be asked questions used on government surveys. Researchers will compare that information with extensive medical and social science research on the families to gauge the surveys' effectiveness at identifying child disability.

In addition, Brown researchers will analyze results from 1994 and 1995 government surveys of an estimated 7,500 school-age children with disabilities. They will determine what information the surveys provide about who the children are, how they are disabled, and how their families are affected.

Within this study, disabilities are defined as functional limitations, including a child's inability to perform - or difficulty in performing - activities such as getting in and out of a bed or a chair, walking, eating, bathing, climbing into a bus, sitting still and paying attention in class. An estimated 20 percent of school-age American children are either functionally limited or grow up in a family with a functionally limited sibling, Hogan said.

Local parents involved in the study will be parents of children born very prematurely, a population with a strong chance of having some type of functional limitation. Researchers will look at each family's economic stability and demographic structure and the social development and problem behavior of children within the family. They will look at factors such as whether one parent had to quit a job; whether siblings cannot go out socially because their help is needed at home; and whether transportation, parental education level and health insurance affect the ways in which families deal with a disabled child's care.

"We know family environment plays a large part in the outcome of these children," said Betty Vohr, study researcher and director of the neonatal follow-up clinic at Women & Infants Hospital. "The more we can learn, the more we can eventually improve that outcome."

In addition to Vohr and Hogan, the research team includes Roger Avery, adjunct associate professor of sociology; Frances Goldscheider, professor of sociology; Joseph Hogan, assistant professor in the Center for Statistical Sciences; and Michael Msall, professor of pediatrics and director of the Child Development Center at Rhode Island Hospital. Acting as a consultant is Felicia LeClere, research assistant professor in the Laboratory for Social Research at the University of Notre Dame.

The project qualifies Brown as part of the NICHD's Family and Child Well-Being Network, a network of nine institutions nationwide united around the goal of influencing public policy through interdisciplinary research. The network also includes Cornell University; the University of Wisconsin-Madison; Northwestern University; the Institute for Social Research, University of Michigan; Child Trends; the University of North Carolina; the University of Michigan; and Teachers College, Columbia University.