Research Spotlight

Rune J. Simeonsson leads six-year international initiative

New classification provides universal language for characteristics of children and youth

After six years of work by an international team commissioned by the World Health Organization, the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) has been published. Rune J. Simeonsson, professor of school psychology and early childhood education, chaired the working group that developed the 376-page classification. Additional participants included six researchers, educators, clinicians and policymakers from Italy, the Netherlands, Sweden, Switzerland and the United States. The U.S. Centers for Disease Control provided substantial support for the work.

“In the development of the ICF-CY, we held working meetings in different parts of the world, including Asia, Africa, Europe, North America and of course at the World Health Organization headquarters in Geneva,” Simeonsson said. “There were many players in the process. We had major involvement from China and representative work from Japan and Australia, among others. It’s been a long road and we’re glad to be at this point.”

The new publication was introduced and launched at an international conference Oct. 25-26, 2007 in Venice, Italy, hosted by the Veneto Region International Health and Social Affairs Office and the World Health Organization, the United Nations’ public health arm that provides leadership on global health matters.

The classificationoffers a new, universal language for describing the characteristics of children and youth that are important to their growth, health and development. In contrast to medical classifications, the ICF-CY introduces a new way of thinking by focusing not on diagnoses but on an individual’s functioning, shifting the emphasis from cause to impact on performance of human activities.

The ICF-CY addresses the major dimensions of human functioning – body function, body structure, activities, participation and environmental factors. It can be used to describe characteristics of an individual child or a population.

“The ICF-CY offers, for the first time, a classification for education including dimensions of learning, behavior and schooling. Its common language will help us talk to one another across disciplines and across agencies, to communicate what we’ve learned and what we’re concerned about to others who come into contact with the same child,” Simeonsson explained.  

In current practice, for example, a child diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) may need special education services in school. However, the medical diagnosis of ADHD does not correspond with any of the 13 categories that a child must fall into in order to receive special education services. As a result, in order to be served by special education, a child with ADHD is defined as having “other health impairments,” a non-descriptive, catchall category. With the ICF-CY, any child’s need for special education would be based on consideration of functioning – in this case, limitations in sitting still and paying attention.

“We used to have to play word games with each other in order to identify a child’s needs and provide appropriate interventions,” Simeonsson said. “Now we can describe a child’s needs with a functional profile rather than a diagnostic category. That’s a big difference. Once we get into that mindset, it opens the door to making a better match of a child’s needs with available supports and resources.”

A unique feature of the ICF-CY is the inclusion of environmental factors. In the past, within a medical model, people were considered “handicapped” because they had a diagnosed condition or impairment. The biopsychosocial model of the ICF-CY recognizes that individuals experience disability as a result of interactions with environments that are not supportive or that present barriers. For instance, the lack of people who can sign is a barrier for someone with limited hearing and the lack of a ramp into a building with steps can present a barrier for a person in a wheelchair.

“Many of the most crucial – and most subtle – barriers are attitudinal and embedded in the way people behave toward individuals with disabilities,” Simeonsson noted. “Children experience disadvantage or discrimination because peers and adults think they can’t do something or shouldn’t be somewhere because they have a disability. In many ways, the ICF-CY is revolutionary by embodying these environmental and attitudinal factors in a classification.”

Now that the ICF-CY has been published, Simeonsson hopes it will be widely accepted and used around the world. “We now have a classification, but implementation is going to be the next generation of work,” he said.

Measurement tools need to be developed so that the classification can be translated into practice. In addition, shifts in attitudes and policies are needed to facilitate the implementation of the ICF-CY.

“Attitude change and policy change happen slowly,” Simeonsson reflected. “I am encouraged that in a recent report on The Future of Disability in America by the Institute of Medicine, three of eighteen recommendations focused on the adoption and implementation of the ICF by government agencies to improve practice and policy. Applications in health and education are already emerging in several European countries and Japan.”  

“I believe the ICF-CY is practical and very compatible with what we’re trying to do in the world today to promote the health, development and education of children and youth,” he continued. “It will be exciting to see how quickly change can be made in this direction and I look forward to doing my part to make that happen.”