You have raised your child to adulthood, helped them through school, and now are preparing them for college. You helped with application and admissions, bought all the dorm room supplies, and set them up on a dining plan.
You feel confident you prepared them to manage their bleeding disorder. They’re ready for an independent life, but are they really ready? Do you both know where their medication will be shipped, or where to dispose of supplies post infusion? What happens if a medical incident prevents attendance in a credit-bearing class with a mandatory attendance rule? Does the school have parking options if the child has mobility issues? Even the most prepared parents might need an overview of some of the things to prepare for when sending your child with a bleeding disorder off to college.
1. Contact the Hemophilia Treatment Center, Hematologist or Physician
Ask the physician for a letter explaining your child’s medical condition and its potential impact on education. The note should also explain that due to the patient’s condition, medication must be kept readily on hand and in some cases, at a controlled temperature. The student may need use of a refrigerator in their dorm room for the sole purpose of storing medical products.
2. Contact Student Housing (On Campus Housing)
Contact the student housing manager to let them know that a student with a chronic medical condition is coming to live on campus. Ask what documentation needs to be presented to allow the student to keep medication and supplies on hand. Be certain you document (via email or fax) the housing manager with whom you spoke. Be sure to follow up 30 days prior to the start of school and within a day or two of the student moving into the dorms.
3. Contact the Student Health Center
The providers at the Student Health Center will be the first line of defense in a medical situation. A basic bump, bruise, slip, or fall may not be a big deal to other students, but may present a bigger problem for a student with a bleeding disorder. By contacting the Student Health Center, you can provide an overview of bleeding disorders and protocols as it pertains to your student’s bleeding disorder.
4. Contact the Surrounding Medical Providers
Locate healthcare providers near campus that may have some experience with bleeding disorders. Contact the identified providers ahead of time to make introductions and familiarize them with your student’s history and bleeding disorder needs.
5. Contact Shipping and Receiving
Contact campus shipping and receiving for their policies and procedures for receiving packages on campus. Identify the process for your student’s campus, and request modifications for medication deliveries, if needed.
6. Work with the HTC or Hematologist and Partner with Industry for an In-Service
When a student goes to college, they are separated from their customary support system. They no longer have someone who has been trained to support, help find the vein, or assist in mixing their dose when needed. It’s important for the student to find a person they’re comfortable disclosing their medical condition with and to develop a new support system. Often, HTCs or homecare and specialty pharmacies can conduct a short in-service to teach bleeding disorder basics and the role of a patient’s support system. Once the student determines with whom they’re comfortable disclosing their condition, it might help to schedule a session.
7. Does Your Child Have Educational Accommodations (504 Plan)?
A 504 Plan for health impairment is enforceable in federally funded educational settings for students, ages 3-22. If your student had a 504 Plan for their bleeding disorder in high school, it can most likely be implemented in college, especially if they attend a state college or university. Don’t wait until absences have caused them to drop or fail a class. Schedule a meeting with the school’s Disability Resource Center (DRC) to discuss the student’s current 504 Plan.
Home Infusion Steps and Helpful Tips
Even those very experienced in self-infusion sometimes miss a vein. For those living with a bleeding disorder on factor replacement therapy, this 3-page guide provides steps for successful home infusion. The guide also provides helpful tips for infusing a child.
Patient Navigation Program
Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!
DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.
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