How to Create a 504 Plan for a Child with Diabetes

When I first heard the term “504 plan,” I assumed it was the plan of action if your blood sugar if 500 mg/dL.  Which it is not.  But my type 1 diabetes diagnosis in 1986 left my family responsible for assembling an unofficial, ad hoc version of a care plan that worked for us and the school system; the concept of a structured plan being in place was beyond us, even though the groundwork for these plans was put into place in the 1970’s.

Despite growing up without a 504 Plan, I wanted to learn more about these smart plans to help protect students with diabetes.

What is a 504 plan?

A 504 plan is named for Section 504 of the Rehabilitation Act of 1973, which is a federal civil rights law that prohibits discrimination on the basis of disability. The plan itself is an outline for the actions taken by a school to ensure that a child with diabetes, or other health condition specified as a disability, is treated fairly. According to the American Diabetes Association, it’s a “tool that can be used to make sure that students, parents/guardians, and school staff understand their responsibilities and to minimize misunderstandings.” It’s designed to help students with disabilities in public schools or publicly funded private schools create customized educational plans. 

With so many variables in play for a child with diabetes, the need to minimize misunderstandings is important. (See also:  making sure you don’t give insulin if a child is low, which for some reason seems to be a common diabetes misunderstanding).

I’ve heard of a DMMP.  But what exactly is that?

A DMMP is a “diabetes medical management plan” and it’s one of the key components of a section 504 plan, as it outlines specifics about your child’s diabetes and includes details about how often to monitor a child’s blood glucose levels, what the target numbers are, how to treat lows or highs, meal plans, and managing blood glucose levels during physical activity. 

With technology like continuous glucose monitoring available to students with diabetes, 504 plans can also outline the necessary tech specs for families. “The students in our schools are not permitted to carry phones during the day. We have written in my daughter’s 504 plan that she is allowed to carry her phone at all times and wear an Apple Watch as both allow her to monitor her blood sugar,” said Misty First, parent of a child with diabetes.

How do you create a 504 plan for a child with diabetes?

The American Diabetes Association has created an excellent boilerplate 504 plan that you can download and modify as needed – click here to download the PDF version. Children With Diabetes also has a series of sample plans created by parents from their network, and you can download those here. For many families, a sample document can help inform the 504 plan, but if caregivers want a little more guidance, they can work with their healthcare team to create a plan that gives them confidence.

Need a little guidance on more of what should be included in your child’s 504 Plan? The American Diabetes Association comes through again with a list of typical provisions found in these plans:

• Multiple staff members are trained to check blood glucose levels and administer insulin and glucagon.  
• All school staff—including teachers, coaches and bus drivers—who interact regularly with the student know how to recognize high and low blood glucose levels and respond appropriately.
• Capable students are allowed to self-manage anywhere, anytime, and keep their diabetes supplies with them.
• Needed assistance is provided in the classroom to increase safety and decrease missed class time.
• Full participation in all sports, extracurricular activities, and field trips, with the necessary diabetes care assistance and/or supervision provided.
• Permission to eat whenever and wherever necessary, including eating lunch at an appropriate time with enough time to finish eating.
• Permission to take extra trips to the bathroom or water fountain.
• Permission for extra absences for medical appointments and sick days without penalty.
• Alternate arrangements for classroom time missed for medical appointments, because of periods of high or low blood glucose, or illness related to diabetes.*

How do 504 Plans help?

“Having a 504 provides a peace of mind that if a teacher were to become a challenge that we have a 504 to refer back to and help avoid conflicts. It helps my daughter to not have to worry so much about if a teacher yells at [her] for having my phone out, testing, eating etc.” said Trisha Irvin, parent of a child with diabetes.

Andi Hoy Thomas, an adult with diabetes who was diagnosed as a child, appreciates that a 504 plan helps PWD communicate in tough moments. “In 7th grade the assistant principal ripped ‘my phone’ from my hands as I was walking down the hallway and it was quite a shock to him when I started crying and headed towards the nurse. Once I hit high school I personally told my teachers at the beginning of the year. I love the idea that the 504 helps communicate needs when the individual can’t. My brain is a total cloud when I’m low.”

Moira McCarthy Stanford, parent of a child with diabetes and also the author of Raising Teens with Diabetes: A Survival Guide for Parents, said, “It is important with high school students to let them do some of the “driving” on this. What do they want? What do they feel they need (after being educated on what their rights are)? And then, let them choose when to use it. It can be infuriating for a parent when a teen does not want to use something like, say, retaking a test because of blood glucose levels. But they are at an age where they should be beginning to figure out what they want and need and when.”

The peace of mind provided by a 504 plan can go a long way for families affected by diabetes, because diabetes, at the moment, is part of the foreseeable future.  

Leigh Davis Fickling, mother of a child with diabetes, offered, “The diagnosis may not change. The need for accommodations will change as the student moves through the educational system. These things are really important and worth fighting for, in my opinion. Your diabetes may vary but your need to access education with a level playing field will not change … until we get the cure.”

Source:  American Diabetes Association “Section 504 Plan”

Kerri Sparling

Kerri Sparling has been living with type 1 diabetes since 1986 and writes the diabetes blog www.SixUntilMe.com. She believes in diabetes advocacy, patient empowerment, and strong coffee. Kerri lives in Rhode Island with her husband, their two children, and an unfortunate army of cats

Kerri Sparling

Kerri Sparling has been living with type 1 diabetes since 1986 and writes the diabetes blog www.SixUntilMe.com. She believes in diabetes advocacy, patient empowerment, and strong coffee. Kerri lives in Rhode Island with her husband, her daughter, and an unfortunate army of cats.