Researchers help update tool to assist those with intellectual disabilities

LAWRENCE — University of Kansas researchers are at the forefront of efforts to develop standardized measures of the support needs of children and adults with intellectual disability. Such tools represent a new way of thinking about how to enable people with disabilities to actively participate in the community and engage in activities and life experiences.

Karrie Shogren is an associate professor of special education and associate director of the Kansas University Center on Developmental Disabilities. Michael Wehmeyer is a professor of special education and executive director of the Kansas University Center on Developmental Disabilities. They have played key roles in the development of the Supports Intensity Scale — Adult Version, known as SIS-A, and the Supports Intensity Scale — Children’s Version, known as SIS-C. Both of the scales will be published by the American Association on Intellectual and Developmental Disabilities in the coming year. The original version of the SIS, for adults ages 16-64 with intellectual disabilities, was published in 2004. Shogren and Wehmeyer, with other colleagues worldwide, were invited to participate in the development of a “refreshed” version of the ground-breaking scale. Further, because of a recognized need to measure the support needs of children, they were invited to participate in the development of SIS-C.

The KU researchers helped “create norms” for the SIS-C by gathering data on thousands of children ages 5-16 across the nation. They identified the distribution of SIS scores for age groups of students with intellectual and developmental disabilities by assessing the level of support students needed. The SIS-C will be administered by an interviewer, often a field worker or special education teacher, and help build a foundation for a support plan. Like the SIS-A, which focused on multiple domains of life such as work, home life, community life and others, the SIS-C will focus on seven domains of children’s lives.

“These scales were developed to focus on what support is needed by people with disabilities to participate in their communities and in valued life experiences like school, work and social activities,” Shogren said. “If we know what support an individual needs, we can develop a plan to provide it. In the past, the focus had been on a person’s deficits, rather than the person’s preferences, skills and life goals which has failed to enable people to achieve what they want and need in life.

“The interviewer will no longer be able to say 'the person can’t do it.’ It will be ‘what supports are needed for them to be able to do it,’” Shogren said. “It’s ‘what is it going to take to make it happen.’ And it’s OK if the answer doesn’t look the same for everyone.”

Shogren, Wehmeyer and colleagues recently introduced the SIS-C at the AAIDD annual conference in Orlando, Florida. A special issue of the journal Inclusion, which Wehmeyer and Shogren co-edit, was also published that included a number of studies on the SIS-A and the SIS-C. Soon both scales will be available to practitioners, teachers, support providers and families across the country.

The SIS-A has already found worldwide success, having been translated into 13 languages and adopted in 23 U.S. states and Canadian provinces to assist in the planning of individualized supports and more equitably distribute resources by state developmental disability service systems. The SIS-C is showing signs of similar success, being translated into five languages already.

“It’s exciting. We’ve seen massive changes for the better in adult supports and services as a result of the SIS,” Shogren said. “We think the SIS-C will be just as successful and has the potential to significantly impact education support planning. It provides a tool to change the way we think about people with disabilities.”