The 8-year-old son of Caly and Wade Watkins is an active and happy Utah boy, they say. He fishes in a pond, sometimes landing a catfish, which he throws back. He rides his dirt bike for miles. He pores over his schoolwork, which in second grade included mastering multiplication tables.
But at least four times a day, the Watkinses’s son, who has Type 1 diabetes, needs to test his blood sugar and take injections of insulin, including while in school. Last year, a disagreement over how his medical plan should be administered led the Jordan School District to bar the boy from attending classes, according to a lawsuit filed this month in Federal District Court.
So during the 2018-19 school year, the boy did his class work on the dining room table at the family home instead of attending Butterfield Canyon Elementary School with his friends in Herriman, a city of about 26,000 people in southwestern Salt Lake County. But Ms. Watkins said he kept his school bag and medical kit ready, just in case.
“He would cry and get angry,” she said. “He loves school. He is very good at math; he is working on reading; he loves his friends.”
In the lawsuit, filed on June 13, Ms. Watkins alleges that the school district’s decision violates the boy’s rights under state and federal laws that require public schools to accommodate the medical needs of students, and that prohibit discrimination based on a disability.
The district has allegedly denied him “his right to attend school with his non-diabetic peers for an entire school year,” it says.
The boy, referred to as K.W. in the lawsuit, is one of about 167,000 Americans under 20 who have Type 1 diabetes, according to 2009 data from the Centers for Disease Control and Prevention.
At least 34 states and the District of Columbia have trained teachers, administrators and coaches in schools who are permitted to give routine insulin and emergency glucagon, according to the American Diabetes Association. School employees also follow individual plans written for a diabetic student by a doctor or a nurse.
But the Watkins family’s struggles with school officials in managing K.W.’s diabetes are not unusual. The Department of Education’s Office for Civil Rights received 38 complaints regarding how school districts handled diabetes-related cases in the United States in the 2019 fiscal year, an agency spokesman said. There were 55 the year before.
Some students have encountered difficulties receiving routine care at schools, such as insulin shots or blood sugar monitoring. Children have been barred from attending their zoned schools or have been transferred after diagnosis to schools with nurses, previous reporting by The Times has found.
Others are not allowed to participate in sports or extracurricular activities.
“He’s a normal boy who needs to stop and test his blood sugar and inject insulin so he can continue to do what he loves!” Ms. Watkins said.
The Salt Lake Tribune wrote about the family in an article on Wednesday.
Under Utah law, a public school is required to allow a student to self-administer diabetes medication with permission from the child’s parents and doctors. Nurses or trained school staff members can administer the medication if they follow the child’s preauthorized health plan.
It also allows students to carry the medicine and to administer it to themselves.
But Jordan School District policy allows medication delivered by syringe only if it has been prefilled by the drug manufacturer or by a registered pharmacist. This was a factor in the disagreement between the district and the Watkins family, who wanted to be responsible for filling the syringes themselves.
The school district and Joan M. Andrews, a lawyer for the district, referred questions about the case to the Utah attorney general’s office, which declined to comment on Friday. An email that Ms. Andrews wrote in December to the Watkinses’ lawyer, attached to the lawsuit as evidence, showed that the district had made attempts to resolve the issue.
The complications arose after the 2016-17 school year, when the boy was in kindergarten and his 10-year-old sister would check on him in class to make sure his insulin pump was working properly, Ms. Watkins said.
The next school year, when he was in first grade, school nurses injected him with medicine they had drawn out of a vial.
But K.W. uses one type of insulin that is diluted, depending on his needs, and another type that is available without a prescription for his lunch dose, the lawsuit said. Ms. Watkins asked to verify every dose, so the staff agreed to text her photographs so she could confirm them.
Sometimes those images were blurry or were not sent at all, the lawsuit said. Once, in January 2018, a nurse sent her a message showing a syringe containing 10 units of the insulin solution, rather than the proper dose of one unit, it said. Ms. Watkins called the nurse, and “a possibly fatal medical emergency was averted,” the suit alleged.
Ms. Watkins, 36, who also has Type 1 diabetes, then asked that K.W. be allowed to use syringes prefilled by his parents at home or to allow his parents to go to the school to give him the medication. The requests were denied.
“They would not permit the home dilution of the insulin, which the parents have done for years,” Nate Crippes, a lawyer with the Disability Law Center who is representing the Watkins family, said on Thursday. “It’s a simple process.”
“Requiring a pharmacy to do it would add expense and time to the family, and no pharmacy, to my knowledge, would prefill the syringe, nor label it, something the district also suggested,” he said.
Just before the 2018-19 school year, when K.W. was to start second grade, there was no agreement on a health plan and the boy was placed on “home and hospital status,” meaning he was deemed too ill to attend school.
In December, the district said it would consider allowing the boy to come to school if the prefilled syringes were labeled by a pharmacy, so the district knew “exactly what is in the syringes” in case they were inadvertently given to another child, Ms. Andrews, the district lawyer, said in the email included as evidence with the lawsuit.
But Ms. Watkins alleged in the lawsuit that the method of prefilling by a pharmacist was impractical, unaffordable and not covered by insurance, the lawsuit said. It is seeking an end to the school exclusion and damages.
“As far as I know, there is nothing specifically like this where a student is being denied access because of diabetes medication in Utah,” Mr. Crippes said.
K.W. was provided with a home schooling curriculum and the school offered to send a teacher to the house a few hours a week, Ms. Watkins said.
In a brief interview, the boy said that he felt “mad” to be kept from school, and that he missed his friends, lunch, recess and playing basketball.
Asked what it was like to mingle with his peers at school as a boy with diabetes, he said: “It is pretty easy. I would just tell them I have a disability.”
