Back to School: Children with Type 1 Diabetes
By Jewels Doskicz
The start of the school year can be a stressful time for parents of children with diabetes. Learn more about the documentation schools require, how to talk to school staff, and how to develop a plan to ensure your child’s safety as they return to school.
Building a diabetes partnership with your child’s school is essential for their health and safety. This includes talking with teachers, support staff, peers — and especially the school nurse.
Orienting school personnel may fall into your bucket of “not-so-fun things” that parents have to do every year. But here’s the good news: the process gets easier over time. Information carries over year-to-year with staff, and paperwork will only need updates yearly or when circumstances change.
Kim Lonsway, an occupational therapist in Tucson, Arizona, and mother of a child with type 1 diabetes, said, “My daughter was diagnosed with type 1 diabetes at age 4, and at the time, she was in a private Montessori preschool. I taught the staff what I knew, but a diabetes educator from Banner Children’s [Hospital in Tucson, Arizona,] came into the classroom to help. The first time teaching was the hardest, but it became easier every year.”
Maintaining blood glucose and Time in Range (TIR) between 70-180 mg/dl is one of the most challenging parts of diabetes. It can be even more so when kids have “spur of the moment” bursts of activity. Consequently, hypoglycemia is a common source of parental anxiety, especially when your kids are out of sight. It is helpful to discuss obtaining a continuous glucose monitor (CGM) with your child’s healthcare provider so that both you and your child get hypoglycemia alerts and can track TIR.
To get the school year started right, it helps to make sure that additional support and emergency supplies are in place when and where they’re needed.
Hypoglycemia (glucose below 70 mg/dl) at school
Low blood glucose can happen at any time and anywhere, including at school. In 2018, there were 248,000 emergency room visits for hypoglycemia in the US. While mild to moderate hypoglycemia is usually easy to treat with fast-acting sugar, severe hypoglycemia requires more. The key is having an emergency plan to treat it and the supplies needed, as hypoglycemia can quickly become a life-threatening emergency.
“I’ve had school staff tell me they know how to use a glucagon device. And I responded with — ’Well, everyone knows what to do in a fire drill and we still practice,’” said Lonsway, recalling that she faced pushback about glucagon training.
Newer-generation emergency glucagon options have made it easier to administer the treatment and train for an emergency. These options include:
Gvoke HypoPen® by Xeris and Zegalogue® by Zealand – these products come as auto injector pens. Pre-filled syringes are available for both products, so there’s no preparation required. There are only a few simple steps for their use.
Baqsimi® by Eli Lilly – a single-dose of glucagon nasal spray. This option has no needles or auto injectors. Research shows that it works as well as injectable glucagon.
Any of these glucagon products can be given to a person who is either unconscious or unable to swallow sugar by mouth.
What documentation do I need for my child with diabetes at school?
Speaking with teachers and having emergency glucagon on hand are just a part of the prep work toward creating a plan to keep your child safe at school. You may have also heard about other documentation that schools require, such as a "504 plan" and "diabetes medical management plan."
What is a 504 plan, and does my child need one?
Under Section 504 of the Rehabilitation Act of 1973, a provision was set in place for protections against discrimination. Diabetes is considered a medical disability and is covered under this law. This means that your child’s school is required to provide accommodations for special medical needs related to diabetes. Most families will create a 504 plan to ensure these needs are met.
The Americans with Disabilities Act also prohibits discrimination against your child because of their diabetes. Every child and young adult has the right to attend school and participate in programming that children without diabetes do.
While it is the school’s responsibility to know how to provide for your child’s medical needs (including emergencies) while under their supervision, you may find it more effective to work in partnership with school staff.
“It’s normal to have a range of feelings when your child starts a new school year,” Lonsway said. “But it is ensuring and empowering to know that everyone has the tools they need to care for them — we put a lot of trust in others.” Download this example 504 plan from the American Diabetes Association (ADA) to get started.
What is a Diabetes Medical Management Plan?
A diabetes medical management plan (DMMP) provides an outline of daily diabetes care and what to do in case of an emergency. It will take some preparation, but the information will mostly come from your child’s diabetes care team. The DMMP can be included as a part of the 504 Plan and needs to be updated as your child’s care plan changes.
Having a DMMP in place will help to ensure not only your child’s safety but their success at school in general. Download this example DMMP plan from the ADA to get started.
Tips to get school started right
With 12 years of experience educating schools about diabetes, Lonsway shared her tips for starting the school year off on the right foot:
Educate yourself as much as possible about diabetes first.
Use existing resources and seek mentor help from a diabetes educator, JDRF, or the ADA, if needed.
Educate core staff. Emergencies can happen anywhere (Phys Ed, music, art, etc.); educating the nurse or homeroom teacher isn’t enough. To help train staff, keep expired glucagon devices and use them to demonstrate.
Educate peers. Every year, I read “Taking Diabetes to School” to my daughter’s elementary school class.
Ask your diabetes care team for a 504 plan or DMMP template. Start this process early. If the template is very general, add to it.
Put a container together with extra supplies, emergency glucagon, fast-acting carbohydrates, and snacks.
After training school staff, make a plan on how to best communicate with them.
Finally, teach your child how to be a self-advocate for their needs at school.
Heading off to college? Do it feeling confident
Starting college is a big deal for young adults with diabetes. Be reassured, college students with diabetes are still protected under the ADA and Section 504 of the Rehabilitation Act. While postsecondary institutions don't have 504 plans, accommodations can be made informally.
While parents may worry about how much independence to give adult or college-age children, safety concerns don’t stop after high school graduation. This is why the College Diabetes Network (CDN) can be so helpful to your family during this transitional time.
“At CDN, we know that young adults are busy,” said Molly Johannes, Community Manager at CDN. “There's so much to do before going back to school or heading off to college for the first time, and there's extra prep work involved for young adults living with diabetes,”
Johannes urged families with children of all ages to make a plan now instead of waiting for an emergency low blood sugar event.
“We have videos and blog posts featuring, and written by, young adults with diabetes,” she said. “They speak about what it's like to deal with low blood sugar and newer therapies for hypoglycemia that are available.”
In preparation for college life, talk with your child and their healthcare provider about:
Establishing a CGM sharing plan
Identifying and training others for a hypoglycemic event (dorm RA, roommates)
Contacting disability services on campus for special needs
Storing supplies safely
Navigating food choices
Treating highs and lows
Discussing alcohol use
For more about transitioning care, read these articles: