How Do We Define and Measure Disabilities in Children?

On Tuesday, May 8th 2012, the Brookings Institution hosted an event featuring the Future of Children’s most recent volume, Children with Disabilities and its corresponding policy brief, “The SSI Program for Children: Time for Change?

Issue Editor Janet Currie, the Henry Putnam Professor of Economics and Public Affairs and director of the Center for Health and Wellbeing at Princeton University, highlighted the major themes from the volume including the documented increase in disabilities; the recent shift in disabilities from physical to mental health disorders; the significant costs associated with disabilities for individuals and families; the fragmentation of services; and the possibilities for improving the wellbeing of children with disabilities with the medical home model, new technologies, and prevention efforts.

Researchers’ efforts to track trends in disability and understand the causes and implications of the recent increase in diagnoses have been seriously complicated by changes over time in how disability is defined, which criteria should be used for screening, which services should be made available, and to what extent particular conditions are actually considered disabling.

These fundamental challenges of definition and measurement over time became more important as the discussion continued to the Supplemental Security Income (SSI) cash assistance program for children with disabilities. Ron Haskins, Co-Director of the Center on Children and Families at the Brookings Institution, asked a panel including keynote speaker Kenneth Apfel of the University of Maryland and former commissioner of the Social Security Administration, who presented on the history of the program, if it was time to change SSI.

The panel, which also included Marty Ford, Chief Public Policy Officer for the Arc of the United States, Matt Weidinger, Majority Staff Director of the Committee on Ways and Means, U.S. House of Representatives, Jonathan Stein, General Counsel at Community Legal Services of Philadelphia, and Michael Wiseman of the Office of Retirement and Disability Policy, emphasized the need to create a new vision for SSI. They contend that SSI should maintain the income stability it provides for severely disabled children (and there was debate as to how this should be done). It should also look more carefully at reviewing SSI recipients over time to better understand their differing disability levels, and to support them, particularly as they transition to adulthood.

Eventually, the conversation turned to the inevitable: budget constraints. As Ron Haskins and Matt Weidinger noted, Congress is going to cut funding, possibly looking even to means-tested programs such as SSI.

Given that, what is realistic? “And, what are the outcomes that show that SSI is working?” Weidinger asked.

Janet Currie’s response brought the conversation back to one of the volume’s key findings: without a consistent definition of disability and data that tracks children over time, it is difficult to discuss research-based outcomes of SSI. This is not because the program does not work, but because the data simply does not exist. But the credibility of the program should not be discounted simply because of a lack of evidence.

In the meantime, as the volume notes, “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… 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 and these children merit attention.”

To listen to the panel’s recommendations for improving the SSI program, click here.

To read the Children with Disabilities volume, click here.

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