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NIH Updates Research Plan for Students With Down Syndrome

NIH Updates Research Plan For Students with Down Syndrome

The National Institutes of Health has recently updated its plan for research on Down Syndrome. The research will include "an expanded focus on how to improve students' learning and memory and help them participate more in K-12 and higher education."

So says Sarah D. Sparks, education reporter in her article on According to Sparks, this new plan is a "big leap from even a decade ago, and an acknowledgment, say advocates and experts on the syndrome, that research to improve children's medical quality of life is in some places outstripping the pace of innovations to improve their educational trajectory."

"Before some of the serious heart issues were solved, the mortality was so high and so young. The longevity has gone way up, and that brings up more issues for research," said Ricki Sabia, a senior policy adviser for the National Down Syndrome Congress, based in Roswell, Ga. "When my son [now 22] was born, there was no option for college; it wasn't something even thought about. Now, … there's something to actually study."

According to the article, "the need to understand and support students with Down syndrome in school has risen dramatically, in part because children with the condition are more likely than ever to live long enough and be healthy enough to attend."

"Up until the mid-1970s, the severe medical conditions associated with Down syndrome—such as leukemia, heart defects, and autoimmune weaknesses—meant that most babies born with it did not live to school age," the article said. "As the NIH noted, the health advances for those children have been considerable: The average life span of someone born with Down syndrome has risen from 25 in 1983 to more than 60 today."

For schools, the article said, "that translates to more students with Down syndrome continuing in high school, college, and careers, and more questions about how to include them meaningfully at a time of high-stakes testing and accountability. The new research plan includes a focus on the complex genetic and environmental interactions that can affect memory and learning in students with Down syndrome."

The research, the article said, "is already finding that common practice for students with intellectual disabilities may not work as well for those with Down syndrome."

"Learning to talk is harder for students with Down syndrome than other children, even when you take into account IQ, developmental age, and chronological age," said Paul J. Yoder, a professor of special education at Vanderbilt University in Tennessee. "It's tempting to think it's in the child, but that's not true in this case. It's that our method of implementing early intervention has not been sufficient."

Read the full story and comment below. 

Article by Kassondra Granata, Education World Contributor


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