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

The introduction of the continuous glucose monitor (CGM) made that unnecessary. The small device, typically 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 when they move out of a normal range.

Blood sugar that’s too high could call for a dose of insulin — delivered by injection or the touch of a button on an insulin pump — to stave off potentially life-threatening complications including loss of consciousness, while a sip of juice could remedy blood sugar that’s too low, preventing problems such as dizziness and seizures.

Schools around the country say teachers listen for CGM alarms from students’ phones in the classroom. Yet many parents say that there’s no guarantee a teacher will hear an alarm in a busy classroom and that it falls to them to ensure their child is safe when out of a teacher’s earshot by monitoring the app themselves, though they may not be able to quickly contact their child.

Parents say school nurses or administrative staff should remotely monitor CGM apps, making sure someone is paying attention even when a student is outside the classroom — such as at recess, in a noisy lunchroom, or on a field trip.

But many schools have resisted, citing staff shortages and concerns about internet reliability and technical problems with the devices. About one-third of schools do not have a full-time nurse, according to a 2021 survey by the National Association of School Nurses, though other staffers can be trained to monitor CGMs.

Caring for children with Type 1 diabetes is nothing new for schools. Before CGMs, there was no alarm that signaled a problem; instead, it was caught with a time-consuming finger-prick test, or when the problem had progressed and the child showed symptoms of complications.

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

Parents say they are not asking schools to continuously monitor their child’s readings, but rather to ensure that an adult at the school checks that the child responds appropriately.

“People at the [school] district don’t understand the illness, 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. Relying on school staff to hear the alarms led to instances in which no one was nearby to intervene if his blood sugar dropped to critical levels.

“Why have this technology that is meant to prevent harms, and we are not acting on it,” she said.

Corey Dierdorff, a spokesperson for the Pasco County School District, where Luke attends school, said in a statement to KFF Health News that staff members react when they hear a student’s CGM sound an alert. Asked why the district won’t agree to have staff remotely monitor the alarms, he noted concerns about internet reliability.

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

The complaint comes about four years after the Connecticut U.S. attorney’s office determined that having school staffers monitor a student’s CGM was a “reasonable accommodation” under the ADA. That determination was made after four students filed complaints against four Connecticut school districts.

“We fought this fight and won this fight,” said Jonathan Chappell, one of two attorneys who filed the complaints in Connecticut. But the decision has yet to affect students outside the state, he said.

Chappell and Bonnie Roswig, an attorney and director of the nonprofit Center for Children’s Advocacy Disability Rights Project, both said they have heard from parents in 40 states having trouble getting their children’s CGMs remotely monitored in school. Parents in 10 states have filed similar complaints, they said.

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

(CGMs are also used by those with Type 2 diabetes, a different disease tied to risk factors such as diet and exercise that affects tens of millions of people — including a growing number of children, though it is usually not diagnosed until the early teens. Most people with Type 2 diabetes do not take insulin.)

Students with diabetes or another disease or disability typically have a health care plan, developed by their doctor, that works with a school-approved plan to get the support they need. It details necessary accommodations to attend school, such as allowing a child to eat in class or ensuring staff members are trained to check blood glucose or give a shot of insulin.

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

Lynn Nelson, president-elect of the National Association of School Nurses, said when doctors and parents deem a student needs their CGM remotely monitored, the school is obligated under the ADA to meet that need. “It is legally required and the right thing to do.”

Nelson, who also manages school nurse programs in Washington state, said schools often must balance the students’ needs with having enough administrative staff.

“There are real workforce challenges, but that means schools have to go above and beyond for an individual student,” she said.

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

The association last year updated its policy around CGMs, stating: “School districts should remove barriers to remote monitoring by school nurses or trained school staff if this is 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 being diagnosed with Type 1 diabetes and starting to use a CGM.

She said alerts from Ruby’s phone often went unheard outside the classroom, and she could not always reach someone at the school to make sure Ruby was reacting 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 were not allowed to,” she said.

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

CGM alarms can be “disruptive to the student’s education, to classmates and to staff members 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 for the alarms when in class, at recess, at gym class, or during a field trip, she said.

She said the problem with remote monitoring is that staff in the school office doing the monitoring may not know where the student is to tend to them 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 remotely tracks her CGM.

“Her blood sugar is better controlled, and she is not scared and stressed anymore and can focus on learning,” she said. “She is happy to go to school and is thriving.”

Some schools have changed their policies. For more than a year, several parents 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.

Before, Lauren Valentine would get alerts from 8-year-old son Leo’s CGM and call the school he attends in Loudoun County, not knowing if anyone was taking action. Valentine said the school nurse now tracks Leo’s blood sugar from an iPad in 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 school clinic nurses know what is happening.”

This article was reprinted from khn.org, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF – the independent source for health policy research, polling, and journalism.