Nearly every morning for the past year, Caly Watkins said that when her son woke up, he’d ask: “Do I get to go back to school today?”
“No, baby,” the mom would tell her 8-year-old, who was supposed to be in second grade. “Not yet.”
Sometimes, he’d cry. Mostly, he’d just work on adding and subtracting in his workbook while Watkins took his older sister to Butterfield Canyon Elementary in Herriman. He kept his backpack ready to go in case her answer changed.
“It’s just heartbreaking,” she said. “He wants to go to school. It’s frustrating because he’s perfectly healthy to do so.”
The problem is: The district doesn’t think so.
Watkins’ son has Type 1 diabetes. He needs shots at least four times each day, including at breakfast and lunch and whenever his blood sugar rises. On bad days, he takes as many as eight injections.
By Jordan School District policy, the boy can’t carry his own diluted insulin. But without it close at hand, he can’t get through the day. So the district has put him on home and hospital status — reserved for kids who are too sick to go to school — effectively prohibiting him from coming to class.
Watkins believes that breaks the law. And, after he missed an entire school year because of it, she’s now suing to get her son back in class this fall.
“This is discrimination,” she said. “His rights have been violated just because he has a medical disability. That’s no reason to kick him out.”
The lawsuit, filed this month in U.S. District Court, alleges the district and administrators have broken state and federal statutes that allow students to carry medical supplies at school. Utah code, in particular, specifies that insulin should be permitted. And the Americans with Disabilities Act requires schools to make reasonable accommodations for those with illnesses.
Jordan School District declined to comment on the pending litigation.
The boy, a minor who’s identified only as K.W. in the court filing, went to Butterfield Canyon Elementary for kindergarten and first grade. A school nurse administered his insulin then — which school policy permits — but Watkins said it became an issue.
Sometimes, the nurse forgot. One time, the lawsuit alleges, she almost gave K.W. 10 times as much insulin than his required dose. It was a particularly bad setup when K.W.’s blood sugar spiked and he needed an emergency shot; the front office was too far away, Watkins said.
So she asked the school to allow her son to bring pre-filled syringes with his medicine. She would add the correct amount of diluted insulin, and he’d administer it himself. The district said no.
Administrators suggested that he could give himself the doses only if they could keep them locked in the front office so other kids wouldn’t get into the supplies. K.W.'s mother said the front office is too far away.
“My child will die if he doesn’t have immediate access to the medicine,” Watkins countered.
The lawsuit describes negotiations that went on for months. By September 2018, there was no signed medical agreement, and K.W. was told he couldn’t attend school at Butterfield Canyon.
At the elementary, roughly one in 10 students has a disability. But they aren’t all handled the same, said Aaron Kinikini, legal director at the Disability Law Center. The center is representing the family in the lawsuit.
The district’s policy states that “elementary students may carry and self-administer auto injectable epinephrine, insulin, and asthma inhalers during the regular school day.” It requires a doctor’s note, a signed parent form and a statement on the dosage and schedule.
The lawsuit includes emails from the school district as exhibits. In those emails, the district has contended that K.W. would be allowed to keep the insulin with him in a specially marked bag as long as each dose was filled by a pharmacist and each dose included a signed label. Only that makes it safe and “auto injectable," according to the rules.
“That’s just completely unworkable,” Kinikini said.
Students who use ready-made insulin can get those labels — and have been allowed to carry their supplies at Butterfield Canyon — but because K.W. uses a diluted form, it’s not as easy. Pharmacists don’t fill those syringes because individual patients have different needs. It would also be expensive.
K.W., for instance, is sensitive to the medicine. And his body needs a 20% reduced version to process correctly. So his parents get a wholesale version of insulin and dilute it.
Joan Andrews, the legal counsel for the district, wrote in one email that the family had to find a way.
“Again, those are important safety considerations because if there were ever an issue or problem with the inadvertent administration of insulin to another child or staff, the district would need to know exactly what is in the syringes and that it was prepared under the supervision of a licensed pharmacist,” she said.
But Utah law, Kinikini contends, says only that a public school is required to permit a student to possess and self-administer “diabetes medication.” It does not specify anything about labeling. And the Americans with Disabilities Act requires schools to make accommodations for students with diabetes.
The lawsuit calls for injunctive relief, allowing K.W. back to school immediately while allowing him to carry his supplies.
His mom said K.W. misses school and seeing his friends. When they go to pick up his older sister in the afternoon, Watkins added, “he understands that he’s the only one out of school because of his disability.”
He rides his scooter around the playground where he used to hang out during recess. He hopes to become a 3rd grader when classes start again in August.