At six years old, Chloe Llewellyn (not pictured above) has already had problems with two different schools when it comes to her Type 1 diabetes.
Chloe, diagnosed with Type 1 when she was two years old, was turned away in 2014 from a private preschool on the morning she was supposed to return for her second year there. The school’s director told Chloe’s family that he’d meant to get in touch with her earlier to say that the school could no longer accommodate Chloe’s needs, according to Bridget Llewellyn, Chloe’s mom. The school at first refused to refund Chloe’s prepaid tuition, but then retreated and revealed that the money had already been spent. The school eventually paid up on a monthly installment plan, and Chloe’s parents were able to find a place for her in another preschool.
Now, Chloe and her family have faced a new challenge in public school at Parley’s Park Elementary School in Park City, Utah. Bridget has documented a dozen times in the past year when she has had to go to the school to care for Chloe because the nurse was not there.
Chloe been left out of one field trip, and her class has had another cancelled because a school nurse or parent couldn’t accompany her.
Utah is a state that permits school nurses to delegate administration of prescription medications to trained and qualified individuals who don’t hold nursing or related care licenses. While it doesn’t mandate this delegation, Utah is pretty much in step with the care standards which underpin the American Diabetes Association’s Safe at School Program. State statutes and regulations permit students to self-administer diabetes medications, school officials to administer emergency glucagon, and school nurses to delegate insulin injections and pump adjustments. The regulations also provide personal liability protection for those who furnish care to school children.
As with many state regulations, however, there is a lot of grey area about what to do when a school nurse isn’t available and school officials decline to delegate responsibility. Bridget Llewellyn has lodged complaints with the Office of Civil Rights, alleging that the school district hadn’t held up its obligation under a written care plan it agreed to follow. The plan is enforceable under the federal Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990.
Bridget says the nurse at Chloe’s school, who formerly worked in a pediatric ICU, thoroughly understands Chloe’s particular needs and embraces diabetes care technology. Overall Bridget has been happy with the willingness of the school’s principal and Chloe’s teachers to keep on top of Chloe’s needs.
“The disconnect is at the district level,” Bridget Llewellyn says.
The problem may stem from ambiguity in the district’s written medication policy, and by a limitation of its two-page diabetes school health care plan. Students in grades 8 and higher can sometimes possess “epi-pens, asthma inhalers, glucagon, diabetic supplies and pancreatic enzymes” for self-administration. However the form to fill out only has spaces to authorize a supervised or unsupervised student or a parent to administer insulin, but not a nurse or trained non-professional. The district’s link to “diabetes” on its site index leads to an November 2012 generic guide entitled “Helping the Student with Diabetes”, published by the National Institute of Diabetes and Digestive and Kidney Diseases.
The district employs four nurses who provide coverage at the district’s eight schools. Its superintendent Dr. Amber Conley has stated that the district expects to add to its nursing staff for the 2016-2017 year. The superintendent commented that the formal complaints were an unnecessary escalation of the matter, she told a reporter for the Park Record.
(Insulin Nation reached out to school district officials, but received no answer to questions for this story.)
Bridget Llewellyn disputes the superintendent’s position. She believes that although she is the only parent in the district who has resorted to a remedy provided through the Department of Education, she believes others have been frustrated by the district’s inattention to the needs of children with diabetes. The department’s investigator reports that parents of children with diabetes often have been solicited to accompany their children on field trips because the schools have no policy for sending a nurse along to monitor children with diabetes and administer insulin. Children with diabetes were usually sent home or required to stay with the school nurse instead of being allowed to go on field trips if a volunteer parent wasn’t available. The report noted that parents of children with other medical needs or disabilities were usually not asked or required to accompany their children on field trips, as the schools made appropriate personnel available.
The Park Record reported a Park City grade schooler had been found alone and in glycemic distress in the nurse’s office five years ago. He’d sent an incoherent text home about being “on the floor” but hadn’t answered when his mother tried reaching him back, and so she went to the school, where officials told her they thought the student had been in class.
While Bridget objects to the number of times she’s been called to care for Chloe, she says she’s been very proactive in her daughter’s in-school diabetes care. When a snowstorm last winter stranded a presenter from getting to the school for a diabetes care plan training session, Bridget conducted the training herself. She also obtained a Section 504 document template on her own to draft Chloe’s care plan, and usher it through revisions, rather than rely on the district’s documentation, which she’d found insufficient and outdated. She and her husband have furnished a smart wrist watch loaded with the Nightscout app for Chloe’s teachers to use to warn of blood sugar swings.
The Llewellyn case proceeded under the Section 504 Plan requirements. An agreement settling the case following an investigation by the Denver Regional office of the U.S. Department of Education will require the school district to bring its 504 policy into line with the law. It also requires the school system to make nursing care available for children on field trips. The settlement agreement includes payment of compensation to Bridget for automobile expense and lost time from work to get to school to administer insulin and to accompany Chloe on a field trip for which the school furnished no coverage. The district must submit a proposed amended Section 504 policy by May 30th to be reviewed for approval by the U.S Department of Education and then implemented within 60 days after it is approved.
(At this time, we do not know if the district has furnished this documentation.)
Parents of children with diabetes can follow two routes when it comes to securing their care during the school day. For children in schools which come under the jurisdiction of the U.S. Department of Education, parents, school officials, and often the child’s physician confer to craft a care plan called a Section 504 Plan, which covers everything from routine daily care to emergency care to coverage for off-campus or after-school activities. The other route to take is a written diabetes medical management plan, which in similar fashion covers insulin administration, glucose testing, and steps to follow for high or low sugar emergencies, and which specifies which responsibilities are the child’s, the parents’ and the school’s. Some parents pursue both.
You can read more about our reporting on the challenges of diabetes care during the school day here.
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