Schools aren't as connected as they should be for children's diabetes tech, parents say

Schools aren't as connected as they should be for children's diabetes tech, parents say

Just a few years ago, children with type 1 diabetes reported to the school nurse several times a day to prick a finger to check whether their blood sugar was dangerously high or low.

The introduction of the continuous glucose monitor (CGM) made this unnecessary. The small device, usually attached to the arm, has a sensor under the skin that sends readings to an app on a phone or other wireless device. The app shows blood sugar levels at a glance and sounds an alarm if they move out of a normal range.

Too high blood sugar could require a dose of insulin - delivered by injection or touching a button on an insulin pump - to ward off potentially life-threatening complications including loss of consciousness, while a sip of juice could fix blood sugar that's too low, preventing problems like dizziness and seizures.

Schools across the country say teachers are listening in classrooms for CGM alerts from students' phones. Still, many parents say there's no guarantee a teacher will hear an alarm in a busy classroom and it's up to them to make sure they contact their child.

Parents say school nurses or administrators should monitor CGM apps remotely and make sure someone is paying attention even when a student is outside the classroom — e.g.

But many schools have resisted, citing staffing shortages and concerns about internet reliability and technical issues with devices. According to a 2021 National Association of School Nurses survey, about a third of schools do not have a full-time nurse, although other staff can be trained to monitor CGMs.

Caring for children with type 1 diabetes is nothing new for schools. Before CGMs, there was no alarm to signal a problem; Instead, it was caught with a time-consuming finger prick test or when the problem had progressed and the child was showing symptoms of complications.

With the proliferation of insulin pumps, many children can respond to problems themselves, reducing the need for schools to provide injections.

Parents say they are not asking schools to continually monitor their child's readings, but rather to ensure an adult at school checks that the child is responding appropriately.

"People at the [school] district don't understand the disease and they don't understand the urgency," said Julie Calidonio of Lutz, Florida.

Calidonio's son Luke, 12, uses a CGM but has received little support from his school, she said. Reliance on school staff to hear the alarms led to cases where no one nearby intervened when his blood sugar fell to critical levels.

“Why this technology that is supposed to prevent harm and we don’t respond to it,” she said.

Corey Dierdorff, a spokesman for the Pasco County school district where Luke attends school, said in a statement to KFF Health News that staff respond when they hear a student's CGM give an alert. When asked why the district wouldn't agree to allow staff to monitor alarms remotely, he noted concerns about internet compatibility.

In September, Calidonio filed a complaint with the U.S. Department of Justice against the district, saying its inability to monitor the devices violates the Americans with Disabilities Act, which requires schools to, among other things, make accommodations for students with diabetes. She is still waiting for a decision.

The complaint comes approximately four years after the Connecticut U.S. Attorney's Office determined that school staff monitoring of a student's CGM was a "reasonable accommodation" under the ADA. This decision came after four students filed complaints against four school districts in Connecticut.

“We fought this fight and won this fight,” said Jonathan Chappell, one of two attorneys who filed the complaints in Connecticut. However, the decision has not yet affected out-of-state students, he said.

Chappell and Bonnie Roswig, an attorney and director of the nonprofit Children's Rights Project, have both heard from parents in 40 states who are struggling to remotely monitor their children's CGMs at school. Parents in 10 states have filed similar complaints, they said.

CGMs are now used by most of the estimated 300,000 people in the U.S. with type 1 diabetes under the age of 20, health experts say. It is also known as juvenile diabetes. It is an autoimmune disease that is typically diagnosed in early childhood and treated with daily insulin to regulate blood sugar. It affects about 1 in 400 out of 20 people, according to the American Academy of Pediatrics.

(CGMs are also used by people with type 2 diabetes, another disease tied to risk factors like diet and exercise that affects tens of millions of people—including a growing number of children, although it is usually not diagnosed until their early teens. Most people with type 2 diabetes do not take insulin.)

Students with diabetes or another illness or disability typically have a health plan developed by their doctor that works in conjunction with a school-based plan to provide the support they need. The necessary accommodations for attending school, e.g. For example, asking a child to eat in class or ensuring staff are trained to check blood sugar or shoot insulin.

For children with type 1 diabetes, the plan typically includes monitoring CGMs and responding to alarms several times a day, Roswig said.

Lynn Nelson, president-elect of the National Association of School Nurses, said if doctors and parents require a student's CGM monitoring for a remotely observed school, the school is obligated under the ADA to meet that need. “It’s legally required and the right thing to do.”

Nelson, who also directs school nursing programs in Washington state, said schools often have to balance student needs with enough administrators.

“There are real challenges for the workforce, but that means schools have to manage everything for a single student,” she said.

Henry Rodriguez, a pediatric endocrinologist at the University of South Florida and spokesman for the American Diabetes Association, said remote monitoring can be challenging for schools. While they are committed to giving every child what they need to manage their diabetes in school, schools can be limited by a lack of support staff, including nurses.

The association updated its policy to include CGMs last year, saying: "School districts should remove barriers to remote monitoring by school nurses or trained school staff when medically necessary for the student."

In San Diego, Taylor Inman, a pediatric pulmonologist, said her daughter Ruby, 8, received little help from her public school after she was diagnosed with Type 1 diabetes and began using a CGM.

She said alerts from Ruby's phone were often unusual outside of the classroom, and she couldn't always reach someone at school to make sure Ruby was responding when her blood sugar levels moved into the abnormal range.

"We kept asking for the school to follow my daughter's CGM and were told they weren't allowed to," she said.

Howard Taras, the San Diego Unified School District's medical adviser, said in a 2020 memo to school nurses that if a student doctor recommends remote monitoring, it should be done by their parents or the doctor's office.

CGM alarms can be “disruptive to the student’s education, classmates, and staff with other responsibilities,” Taras wrote.

“Alarms are closely monitored, even those that occur outside of the classroom,” Susan Barndollar, the district’s executive director of nursing and wellness, said in a statement. Trained adults, including teachers and aides, listen to the alarms in class, at recess, in fitness classes or during a field trip, she said.

She said the problem with remote monitoring is that school office staff conducting the monitoring may not know where the student is being attended to quickly.

Inman said last year they paid $20,000 for a diabetes support dog trained to detect high or low blood sugar and later transferred Ruby to a private school that tracks her CGM remotely.

“Her blood sugar is better controlled and she doesn’t feel anxious and she can concentrate on studying,” she said. “She is happy to be in school and thriving.”

Some schools have changed their policies. For more than a year, several parents have lobbied Loudoun County Public Schools in Northern Virginia to have school nurses follow CGM alerts from their own wireless devices.

The district board approved the change, which took effect in August and affects about 100 of the district's more than 80,000 students.

Previously, Lauren Valentine had notifications from 8-year-old son Leo CGM and call the school he attends in Loudoun County, not knowing if anyone had taken action. Valentine said the school nurse now tracks Leo's blood sugar from an iPad at the clinic.

“It takes the responsibility off my son and the pressure off the teacher,” she said. “And it gives us peace of mind that the nurses at the school clinic know what’s happening.”

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