This month the Joslin Blog is highlighting stories about heading back to school with diabetes. This story was originally posted on April 1, 2016.
For parents that have a child with diabetes, caring for them can seem like a full time job. But as much as you might like to, you can’t spend every moment with your child; which means there will inevitably be other people stepping into the role of caretaker, especially when your child enters school. Babysitters, teachers, coaches—these are just some of the people that must step in to help manage your child’s diabetes. Unfortunately, there are people who aren’t always willing or capable of handling the complex care associated with diabetes management. Debbie Butler, M.S.W., L.I.C.S.W., C.D.E., Associate Director of Pediatric Programs at Joslin Diabetes Center, shares tips for educating others about caring for your child.
One of the best points of care for your child in public school is his or her school nurse. But in the past few years, schools have cut back on the number of hours school nurses work to part-time or eliminating the position all together. In these cases, schools rely on administrators or designated “health clerks” like lunch servers or playground aides (who often have no medical background) as a point of care for students.
This can pose a problem for complex disorders like type 1 diabetes. “I do think a nurse is the best person to manage a child’s diabetes in school. But that’s not always possible,” says Butler. “We have to be realistic. If it’s not possible, then definitely have a non-medical person trained.” She recommends finding someone who is willing to take on the responsibility, as diabetes care is complex.
An important first step, whether you rely on a school nurse or another point of care, is creating a medical care-plan. That way there is a legal document outlining the proper protocol for your child’s treatment. If the school resists this document, then there are several alternative options you can take. Initially, ask your child’s diabetes team to contact the school. If they still meet resistance, then parents can contact the ADA via their advocacy line, which, according to Butler, usually does the trick. “It doesn’t usually have to get to that level,” says Butler. She also recommends a care plan even if you’re very happy with the way your child is being treated. “Things can change year to year, so it’s a good idea to have everything in writing,” she says.
Another obstacle that families might encounter is the recommendation for their child to attend a different school within the system better equipped to care for their diabetes. This solution doesn’t necessarily harm the child, but it can be incredibly inconvenient for their families. For example, what if the other school is across town? What if the child has siblings who are happy at their school and want to remain there? Do you drive to multiple locations in the morning? Do you pull the siblings and make them attend the other school? “It doesn’t seem like that big a deal at first, but it actually creates a lot of issues,” says Butler. The solutions for this problem are hard, and it should be something that parents of a type 1 child should be prepared for.
Private schools can be a little trickier because they may not be required to have nurses or medical aides on site like public schools. The same goes for most preschools, daycares and camps. The amount of care they are willing to provide is up to the institution and it comes down to your decision whether or not you are comfortable with their level of care.
“If you’ve got a three year old, they might not be that articulate to what they need,” says Butler. If teachers are distracted, they may miss a medical emergency (like a low blood glucose) to prevent escalation to a critical situation. There are even a growing number of care centers that refuse to enroll children with complicated medical disorders like type 1 diabetes. These situations can put an immense amount of stress on the family. Butler explains that she once had a patient who would wait in the offices on the second level of her child’s preschool as a precautionary measure if anything went wrong. “The family didn’t trust the preschool teachers to manage their child’s diabetes,” says Butler. “It sounds crazy. But now that I’m a mom I get it.”
Check back next week for some helpful solutions to these school-related issues!
To learn more now, read about our Classes for Caregivers or the Diabetes Education Program for School Nurses. Any questions about these classes can be directed at Akiko Dufoe at 617-309-4530 or email firstname.lastname@example.org. You can also learn more about caring for childhood type 1 diabetes, or request an appointment, by visiting our Pediatrics page.
For more patient stories about dealing with diabetes and the school system, we recommend this article for further reading (via New York Times).