The transition to school for any parent may be a stressful time. For a parent of a child with a bleeding disorder, the stress and challenges are multiplied. This guide was created to help families avoid potential obstacles and create a school environment where their child with a bleeding disorder can excel.
Have a Medical Plan in Place
Meet with the School Nurse
Contact the School Counselor
Implement a 504 Plan
Meet with Educators and Administrators
Advocate for Your Child
1. Have a Medical Plan in Place
Having a medical plan in place can help the school nurses and teachers care for your child and keep him or her safe. Nose bleeds, bruising, hard bumps and falls, and head injuries are a few of the issues that may need to be addressed throughout the school year. Your child’s medical plan should include details such as who to contact and procedures for each incident. For example, Johnny falls on the playground hitting his knee, resulting in bruising. Protocol may include sending the child to the school nurse for evaluation (accompanied by another student or adult), immediately implementing RICE (rest, ice, compression, and elevation of the impacted area), calling the parents, and potentially initiating an infusion (if the student can self-infuse). Medical plans and procedures should be reviewed in person with the school staff and modified as often as needed, both verbally and in writing.
2. Meet with the School Nurse
Prior to meeting with the school nurse, obtain an official letter from your child’s physician or treatment center. The document should be on official letterhead and signed by the physician or member of the child’s medical team. Contents should include treatment protocol, emergency contact phone numbers, specific instructions regarding the child’s care, storage instructions for an emergency dose of factor, all needed ancillaries, a list of additional medications, and storage requirements. Provide a treatment protocol including whether the child is to self-infuse.
Arrange to meet with the school nurse to review the physician’s treatment protocol. Provide a “kit” and package all needed items together. The kit can then be quickly accessed in the event of an emergency at school.
3. Contact the School Counselor
Arrange a meeting to discuss your child’s bleeding disorder relative to school performance and emotional well-being with the school counselor or psychologist. The discussion should include how to treat bleeding episodes, chronic or episodic pain, class tardiness, or how being absent may impact his or her education. Discuss initiating a 504 Plan for the student, if one is not already in place.
4. Implement a 504 Plan
“A 504 Plan is a plan developed to ensure a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment.”*
A 504 is available to students, ages 3-22, who attend a school that receives federal funding (i.e. public school, universities, and colleges) and who has one or more life activities impacted by a qualifying health impairment. Physicians and parents alike may refer their child for a 504 evaluation. The child’s physician or medical team is required to submit medical forms verifying the student’s condition is considered chronic, qualifying him or her for a 504. Include specifics in the 504 such as how excess absences will be handled, the inclusion of extra time allocated to compensate for missed instruction, missed class work and homework, copies of notes, extra textbooks, as well as additional educational accommodations needed.
Do not hesitate to put a 504 in place for your child. The 504 protects the student’s educational integrity given their medical condition. This does not categorize your child as “special education student” rather it protects his or her educational interest under similar protections from the Office of Civil Rights and specifically the American’s with Disabilities Amendment Act. Even if your child NEVER uses the 504 accommodations, it is best to repeatedly renew annually to avoid any disruption in the documentation process should your child ever need the accommodations.
5. Meet with Educators and Administrators
Request a meeting with all persons who will interact with your child to discuss your desired plans for various scenarios. All steps and protocols should be discussed in a face-to-face meeting as well as documented in writing. Be sure to keep a log of meetings for reference.
6. Advocate for Your Child
Sending your child to school can be a nerve-wracking event. Being prepared can help alleviate the anxiety and stress of this step in your child’s life. Please use this document as guidance for preparedness. You are your child’s best advocate; however, if you find yourself in need of assistance or information, please feel free to reach out and ask questions! We are with you every step of
the way!
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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*Source for 504 Plan can be found at: http://www.washington.edu/doit/what-difference-between-iep-and-504-plan. Site accessed on 5/31/17.
