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How to bring the school experience to sick kids learning from home

Friday 23 September 2011

From The Wall Street Journal's Health Blog:


School items
Image: iStockphoto

How to Bring the School Experience to Sick Kids Learning from Home

By Amy Dockser Marcus
SEPTEMBER 19, 2011, 8:41 AM ET

As the WSJ reported over the weekend, kids and adolescents diagnosed with “hidden disabilities” such as chronic fatigue syndrome are posing unique challenges to cash-strapped public schools.

Schools are struggling to accommodate kids’ needs, which may include at-home tutors, altered schedules and limits on activities. And the nature of the conditions, which are tough to observe, evaluate or understand, makes needs-assessment all the more difficult. That can lead to disputes between schools and families.

One of the questions that comes up in those discussions: how to capture the social experience of school.

School isn’t only about books and tests but swapping gossip at lunch, intense discussions in class and conversation by a friend’s locker. Both families and schools struggle with this issue, sometimes ending up at special education hearings through state bureaus of special education or courts.

Charles Pugh, an education lawyer, worked with the family of Christina Gustavsson, a Pennsylvania high-school student who has chronic fatigue syndrome and is featured in the WSJ story. He says a recent decision from a special education hearing that shaped his discussions with the lawyer for Christina’s high school involved a 14-year-old boy in the same state who had a rare genetic disease.

The condition resulted in episodes of severe vomiting, high fever, and terrible joint pain. The boy received nutritional formula directly into his stomach through a gastric tube.

When the boy didn’t have symptoms of his illness, he was able to attend school and participate in the social and academic life. His parents asked that a webcam be set up at home so that when he was too sick to come to school, he could still feel part of school life.

The school was willing to set up a webcam in an room next to the nurse’s office so the boy could work there and stay connected with what was going on elsewhere in school. But the boy’s symptoms at school were so difficult that he only used the room four times. At the hearing, the parents argued the school should set up a webcam at home.

In ruling for the parents, the hearing officer wrote that being at home with technology gave the boy the most access to his classroom and his peers.

How to best use technology to try to capture the social elements of school is still an open question. Thomas Warner is a lawyer at Sweet, Stevens, Tucker & Katz who represented Christina Gustavsson’s school in discussions with the family and whose firm represented the school district in the case of the boy. He says that hearing officers and courts are increasingly recognizing that schools bear a responsibility for the social education of the students, not just their academic achievements.

These decisions often interpret the meaning of educational performance more broadly, to include whether a child’s behavior and socialization — not just his course material– are comparable to his peers. “We tell schools that the days when you can say the student is getting straight A’s and is fine are gone,” says Warner.


The above, with comments, originally appeared here.



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