Parents fight for diabetic kids' rights

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Parents fight for diabetic kids' rights
December 8, 2008
By Carolyn Starks
Chicago Tribune

Families dealing with the disease, which affects about 1 in 500 under age 20, challenge school policies that make it hard to test blood sugar and inject insulin



Her diabetic son wasn't allowed to prick his finger in school to test his blood sugar, and some days the nurse wasn't available, so Kari Christiansen would drive there every two hours to make sure he didn't suffer a serious reaction.

Christiansen had to shuttle the then-kindergartner's blood-testing device back and forth from Westchester Primary School. It was banned from the bus because administrators considered the tiny lancet a weapon.

When she learned that Carter, nearly unconscious, had fallen in the school hallway, Christiansen and her husband took steps to end their "nightmare." They got a lawyer to fight for his rights.

"They refused to train anybody in the building about diabetes," Christiansen said, recalling that officials were worried about spilled blood. "Somebody could come upon him unconscious, and nobody would know what to do."

The couple's efforts reflect a growing movement of parents across the country who are seeking stronger laws and policies to help students with diabetes manage the disease, even if that means having employees other than the nurse learn how to inject insulin or test blood-sugar levels.

"We've had situations where a teacher wanted to assist a child, and the school district has said, no, you're not able to. Only a nurse can be involved," said Ed Kraus, an associate professor at Chicago-Kent School of Law, which has a pro bono legal clinic that protects the rights of students with diabetes.

One of the most chronic diseases afflicting school-age children, diabetes affects about 1 in every 500 people under age 20. With diabetes, the body stops making insulin. It must be managed 24 hours a day through careful monitoring of glucose levels and insulin injections.

The needles diabetics use are skinnier than a straight pin and three-sixteenths of an inch long—the smallest needles in the world. Yet some districts ban them from school buses or keep them locked in medicine cabinets, making it difficult for students to reach them when needed.

Liability fears have prompted some schools to ban diabetics from extracurricular activities or sports teams unless a parent or nurse is present. They likewise have refused to train school personnel about diabetes, forcing parents such as the Christiansens to make repeated trips to school.

All too often, the protocol for helping diabetics who fall ill at school is to call mom or dial 911, advocates say.

In an unprecedented move last year, parents and the American Diabetes Association sued the California Department of Education and forced a settlement in which non-medical school employees would be trained to administer insulin to diabetic children.

But in a legal countermove that underscores the complexity of the issue, several nursing organizations filed their own suit in the case. They argued that only medical professionals should care for diabetics. On Nov. 14, a judge ruled in the nurses' favor.

The American Federation of Teachers supports training non-medical school personnel to perform tasks for diabetic children as long as it's in accord with state law and the training is done by the school nurse, said an AFT spokeswoman.

Twelve states have passed school diabetes-care legislation that allows diabetic students to manage their disease in school without discrimination or missing class or extracurricular activities. The laws say school districts must train personnel on how to inject insulin or test blood sugar and know warning signs.

A similar bill stalled in Illinois. Sponsored by Rep. Tom Cross (R-Oswego), whose daughter has diabetes, it faced opposition from teachers unions and nurses.

Dr. W. Patrick Zeller, a Naperville endocrinologist, has fought many battles with districts on behalf of young patients.

The tension with the districts often abates after nurses and teachers, as well as cafeteria workers and janitors, are educated about diabetes, he said.

The school districts "want to do a good job, and they're worried about getting sued like anybody else," he said. "But they also want to know what to do and, almost always, they will do it."

Still, the experience of T.J. Utech, a sophomore at Crystal Lake Central High School, isn't unusual, advocates say. The teen said his glucometer—used to measure blood-sugar levels—was locked in the nurse's office every day.

Several times, he was shaking and sweating because of low blood sugar when he reached the office, only to find the door locked and a sign saying the nurse was out, he said.

I trained him to carry his glucometer with him everywhere, and then he starts high school and they take it away," said Darlene Utech, who said her son decided to stop giving the device to the nurse this year.

School officials said they couldn't discuss the teen's situation but said diabetic students usually are allowed to test their blood and inject insulin in the classroom. Some students with conditions more difficult to regulate are required to see the nurse because they need closer monitoring, officials said.

In another case, Kathy Schwartz of Highland Park said she wanted to tell teachers that her daughter Jennifer was diabetic, but the school nurse said she would take care of it. Schwartz now regrets she didn't talk to the teachers herself.

When Jennifer was 17, one of her teachers yanked her insulin pump out of her body, her mother said.

Jennifer had unclipped the small pump from the waistband of her pants and set it on her desk. The needle and tubing were still inserted into her abdomen with an infusion set. The teacher heard a beep and grabbed the device, thinking it was a cell phone, the teen's mother said.

"She yelled, 'That's my insulin pump! I'm a diabetic!' " Schwartz said. "He was quite shocked and apologized, but she immediately left the classroom to insert a new infusion set, then called me and was hysterical crying because of the embarrassment."

This school year, Carter Christiansen, a shy boy with wire-rimmed glasses, started 2nd grade. It's the first year he was permitted to test his blood sugar in the classroom, carry snacks in case of low blood sugar and administer insulin with a pump.

A box of his diabetic supplies and food sit on a shelf in the back of his classroom. He said he can test his blood sugar, and "still see and listen to the teacher," then return to his seat in under a minute.

The Christiansens threatened to file suit, but Westchester School District 921/2 eventually agreed to make accommodations for Carter.

"Theirs was a textbook case," said Julie Burger, an attorney with Kraus' team who helped the family mediate problems with the district. "Anything that could go wrong went wrong."

Perhaps Carter's biggest ally, his parents say, was Jean Sophie, a new superintendent hired in the summer.

Sophie understood diabetes because of a childhood friend who had the disease and an adult friend whose child has diabetes.

When the Christiansens approached her, she readily agreed to their requests.

"I don't care what happened in the past," Sophie said. "They came in and asked for a lot, and we did about everything because that's our job as educators."