1. Contact the School Counselor
Speak with the school counselor to discuss the potential impact your student’s medical condition and anticipated absences may have on their education. Discuss how past absences have affected your child and what can be done to minimize the effects. If your child has a 504 Plan, include modifications pertaining to multiple classes, and make sure all teachers are made aware.
2. Continue or Implement a 504 Plan
If a 504 Plan is not yet in place, establish a plan to address absences, makeup work, the inclusion of extra time to compensate for missed instruction related to illness, extra travel time between classes when needed, and any additional educational accommodations required. Your child’s doctor’s office should be able to fill out the medical paperwork needed to initiate the 504 Plan. It is important to consider implementing a 504 Plan regardless of whether your child ever actually needs the accommodations.
3. Contact the School Nurse
Contact the school nurse to discuss your child’s medical condition. Provide the school a letter (written on letterhead) from the child’s physician or medical team explaining the following:
Medical condition
Medication and ancillary storage needs
Instructions for care
Infusion protocol, if the child is to self-infuse
at school
Emergency protocol, including whom to contact
If infusing at school, discuss with the nurse where your child can infuse and what assistance they may need.
Keep in mind not all nurses are familiar with infusion protocol, so it is important to review the steps with them in advance.
4. Hold an in-Person Meeting with School Staff
Invite all school personnel who may interact with your child including teachers, counselors, nurses, and administrators. Use this meeting to review your preferred plans for different situations, including specific protocols for managing bleeds. Clearly communicate the steps to take in the event of a medical issue or emergency. Additionally, emphasize the importance of allowing your child the flexibility to take necessary actions as they see fit.
5. Foster Independence and Self-Advocacy
Encourage your child to ask questions and seek help when needed. Practice role-playing scenarios, such as talking to teachers about assignments or requesting extra help. Discuss the importance of speaking up about their needs, especially if they have a 504 plan in place.
Transitioning to high school is a significant milestone that requires thoughtful planning and collaboration—especially for a teen with a bleeding disorder. By setting clear goals, building a strong support network with school staff, and encouraging independence, families can help their children navigate this new chapter with confidence. Also, whether you communicate with the various school staff by phone, email, or face-to-face, be sure to document your discussions in writing. Keep a log of meetings with dates, times, subject matter, and results of meetings for future references.
Open communication and proactive planning ensure that students are prepared to manage challenges, advocate for their needs, and make the most of their high school experience. Remember, successful transitions are built on teamwork, self-awareness, and a willingness to seek support when needed.
We provide individualized support for those impacted by bleeding disorders. Our team has extensive experience with bleeding disorders and is here for you every step of the way—facilitating access to therapy, keeping you on track with treatment, reducing bleeding episodes, and enhancing your quality of life. Our broad network coverage and Patient Navigation Program help reduce cost and health-system barriers ensuring continued access to care.
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.
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.
