People in the Know: T1D at College

Q: Our daughter has started receiving college acceptance letters; should diabetes factor into her choice of school at all? What rights do students with diabetes have at college?

A: The transition from high school to college is almost always a big one, for both students and parents. As you consider which college or university is the best fit for your child with type 1 diabetes, it can be helpful to understand how her educational rights will change in this new setting.

Two important federal laws that you may already be familiar with at this point in your child’s educational life — the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 (Section 504) — also serve to protect most college students with type 1 diabetes. The ADA applies to all state-run and private colleges, except those operated by religious institutions. Section 504 applies to all colleges that receive federal funds, including those that are religiously affiliated. Only a very few colleges are not subject to either the ADA or Section 504 protections. Another federal law your child with diabetes may have received services under — the Individuals with Disabilities Education Act (IDEA) — does not apply to postsecondary education.

Under applicable law, college students with diabetes have the right to appropriate modifications related to their condition, such as being able to check blood sugar levels or eat or drink as needed during exams, reschedule exams without penalty if blood sugar is out of target range, and have kitchen and/or food access if the child lives in dorm housing provided by the college.

The process for putting these kinds of modifications in place, however, may be vastly different from how you and your child’s school worked together in years past. For starters, colleges and other post-secondary institutions are not required to carry over or adopt Section 504 plans or Individualized Education Programs (IEPs) that may have been used in secondary school.

Likewise, while you may have shouldered most of the work of attending required meetings and advocating for your child, as a newly minted adult, these responsibilities will now belong to your child. By law, public and other qualified elementary and secondary schools are required to identify children in need of services as part of providing every child with a free and appropriate education. Colleges, even public or state universities, do not have this same obligation. To assert his or her rights, it will be your child’s decision and responsibility to self-identify as a person with type 1 diabetes.

How is this done? In general, most colleges provide a disability office to facilitate student accommodations and modifications. Once medical paperwork establishing the condition is provided and approved, students typically receive an “accommodations letter” to give to each of their professors at the beginning of the semester. These notify professors that the student’s disability has been verified by campus administration and list requested modifications as needed. The disability office can also work with college housing to accommodate any needed dorm modifications related to type 1 diabetes.

As for what role diabetes might play as your daughter decides which college she will attend, always keep in mind that students with diabetes have access to the same colleges and college experience as their peers. School choice should never be limited by diabetes. With that said, however, there are some considerations to think about after your daughter has identified her top choices. These include:

  • What kind of meal plan and dining services does the school provide? Is there access to nutritional information for foods provided? Is there food available 24 hours a day? For students with diabetes who also have celiac disease, are gluten-free options available?
  • What kind of access to care and supplies can students expect? To find this out, contact the college’s health center to learn about their services, keeping in mind that at virtually all colleges, students are completely responsible for their own day-to-day diabetes management (and also responsible for seeking help as needed). Likewise, check the college’s proximity to a pharmacy or diabetes provider or hospital.
  • What kind of access to food does dorm housing provide? Does the dorm provide a kitchen or allow in-room refrigerators?
  • How much experience does the college’s disability office have specifically with providing assistance to students with type 1 diabetes?

The college admissions process is stressful, and worrying about how your child will manage diabetes at college is expected. But it may ease your fears to know that there is a lot of support available to college students. One way to start tapping into it is by contacting the college’s local American Diabetes Association chapter (or call 1-800-DIABETES) to learn about advocacy activities and support groups that may be offered. Through its website, the American Diabetes Association offers information related to college student rights and other tips for navigating college with diabetes. Two other groups, the College Diabetes Network and Students with Diabetes, also provide ways to link up with other students doing their best to balance the academic and social aspects of college with taking care of their type 1.

Crystal Jackson—Crystal Jackson is the director of the American Diabetes Association’s Safe at School program.

 

How Other Families Deal

“I was diagnosed with T1D when I was very young, so the entire time I was in school — my very small school — I was known as ‘the kid with diabetes.’ I don’t think that was said about me in a bad way, it was just who I was to everyone: the kid who could have a juice box in the middle of class, the kid who passed out after gym class once. Going off to college — a very large university — suddenly, I’m just Andrew. No one really knows I have diabetes, except for a few people at health services and my close friends. It’s liberating in many ways. But in elementary and high school, if something did go wrong or I needed help, I think my classmates knew the symptoms of a low as well as I did. Here at college, I have to take extra precautions. I have a medical ID bracelet and an app on my phone to help me keep track of my numbers. And I still have a juice box with me in class, tucked in my backpack. Actually, it’s the same brand I’ve been drinking since preschool!”

—Andrew M., 19, Cranberry, N.J.

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Disclaimer: The information in these articles is not intended as medical advice. Families should check with their healthcare professionals regarding individual care.