SALT LAKE CITY — The life of a diabetic is the only life that 5-year-old Brannon has ever known.
It’s a life that includes insulin at breakfast, finger pricks throughout the day and a state of constant concern for his mother, Rachelle Arrington, who sends him off to a school without a full-time nurse on campus.
Arrington’s worst fears came true last week when she remembered that the school nurse wasn’t going to be at Brannon’s school that day and that she had to give him his lunchtime insulin shot — an arrangement she said the school nurse invoked several times a week.
Arrington said she panicked when she walked in and saw Brannon looking pale and glazed over, eating Goldfish crackers by himself in the school office.
She later learned that his blood sugar had dropped as low as 39 milligrams per deciliter — far below the level needed to send him into a hypoglycemic seizure. The teacher, she said, had decided to pull him back from recess but otherwise wasn't sure what to do.
“I panicked,” Arrington said. "He just started crying, and then he just wanted to go home."
A juice brought Brannon's blood sugar back up to 60 mg/dl, but Arrington said she’s been scared since.
"I've just been trying to stay right at home so that as soon as they call I can head over,” she said.
“I don’t even know how I talk myself into letting him go to school. If I could have home-schooled him, I would have. But I just don’t have the financial means.”
Arrington's experience is all too familiar for many parents of children with Type 1 diabetes, of which there are about 2,000 in Utah public schools.
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With one of the worst student-to-nurse ratios in the U.S., Utah school districts are being forced to find other ways to accommodate the needs of students with diabetes.
That often includes relying on part-time nurses, teachers and parents — which can also be illegal under federal and state law.
Margo Hill, coordinator of health and nursing services at Davis School District, compared the situation to a “time bomb.”
"It's kind of like we're all just sitting and waiting," said Hill, who worries that a student with diabetes will have an emergency when a nurse isn’t available. "Is it going to be me? Is it going to be one of my kids? And then what didn't I do that I should have done?”
Some districts, including Jordan School District, contract with hourly nurses to help students administer insulin at lunchtime.
Many others rely on a state law that allows school nurses to train staff members and other lay people to check blood sugar, administer insulin and respond to emergencies.
Washington County School District, for example, recently hired nine part-time workers specifically to assist students with their diabetes care, according to Karen Bess, director of student services at the district.
Still, the district has had some close calls.
On the first day of school last year, a young diabetic student began losing consciousness after his blood sugar dipped to 30 mg/dL, according to Bess.
The school nurse was not available and the health aide had not yet been trained.
Staff did the best they could by feeding the child glucose gel, and the child eventually recovered, according to Bess.
But the experience was "scary," she said, and prompted the district to hire additional health aides and to double their hours from 10 to 20 hours per week.
“If we could get the funding, the ideal would be to have a health aide at every elementary in our district,” Bess said.
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Parents of children with Type 1 diabetes say they often pick up the slack when nurses are stretched too thin, putting off jobs or school so they can go to lunch or recess to help their young children with their insulin and glucose checks.
Lisa Dalley, of Ogden, said she used to go to her 11-year-old son's school in Ogden City School District once a week to help administer insulin to him.
Dalley was also asked to accompany him on field trips when they couldn't find a school nurse or trained aide, she said.
"It was just very matter-of-fact," said Dalley, who moved to Utah from Washington, where she said having a school nurse in every building was common. "It was like, 'Well, this is our expectation.' I was just floored."
Later, her son was not allowed to go on an end-of-the-year class field trip because the school did not have anybody trained who could go with him, according to Dalley.
She eventually transferred all three of her children to a nearby charter school.
"A parent should not have to be afraid to send their child to school because of diabetes or anything else," she said.
Karen Harrop, director of special education for Ogden City School District, said she could not comment on the specific case but said the district tries to avoid relying on parents for diabetes care.
“We really, really, really do everything we can to avoid that,” Harrop said.
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Crystal Woodward, the director of the Safe at School program at the American Diabetes Association, said it’s schools' responsibility to make sure they have enough trained staff so every child can safely attend class.
"Anything short of that is discrimination," Woodward said.
If a school can’t provide a nurse, they should train staff members who can, she said.
“If parents are having to come to school to provide care, they’re in violation of federal and state law,” Woodward said.
Other school districts have gotten in trouble for such practices.
In April, the Office of Civil Rights of the U.S. Department of Education found that the Park City School District had discriminated against a diabetic student by forcing a parent to accompany her on field trips and not having a trained staff member on hand to give the student insulin as outlined in the student's health plan.
After parents raised concerns, Park City School District hired two additional nurses this school year at a cost of about $180,000.
The district now has the best student-to-nurse ratio in the state, according to the Utah Department of Health.
Superintendent Ember Conley said the district had to make school nursing a priority.
Funding for school nurses comes mostly from the local school districts and state educational funds. Since 2007, state lawmakers have also allocated between $882,000 and $1 million per year in matching funds for school nurses, but school administrators say that’s not nearly enough.
A recent Utah Department of Health analysis estimated it would cost an additional $91.1 million to place a full-time nurse in every school in Utah.
But Conley said she saw how important nurses were in her previous district — a high-poverty, low-income school district in Arizona that had a school nurse in every building.
"It was one of those realizations that if we can do it in that district, we can do it in Park City,” Conley said.
The change has been lauded by parents like Christina Miller, who said having a full-time school nurse for her 6-year-old son, Alex, has been "unbelievable.”
When Miller drops Alex off at school, the school nurse texts her his glucose numbers within minutes, she said. Throughout the rest of the day, whether he's at lunch or recess, they’re in constant communication.
“I walk in every day and hand them my son’s pancreas, basically, in electronic form, and say, ‘Here you go. Here’s a vital organ. I need you to keep him alive today,’” Miller said. “The pressure of that is nuts, from a layman’s perspective.”
Knowing that she’s handing him off to a medical professional, "you cannot imagine the relief," she said.