Ask a Social Worker is a monthly column featuring questions from the community and answers from members of NHF’s Social Work Working Group. If you have questions for our social workers, send them to [email protected].
Dear Ashley and Lucy,
My child’s school downplays my concerns about care and preparedness for his bleeding disorder in the classroom and on the playground. How do I get them to understand the importance of school safety and not see me as an overly worried parent?
As a parent of a child with a bleeding disorder, you probably appreciate better than most the difficulty of keeping a healthy balance as you manage their condition.
On one hand, overprotectiveness can lead children to be fearful or withdrawn and have less self-confidence. On the other hand, being too complacent about the bleeding disorder can have serious consequences for your child’s health and safety.
It is for this reason that 504 education plans exist in public schools across the country. A 504 plan is a federally mandated individualized education plan created by a multidisciplinary educational team to provide specific accommodations for a student with a chronic medical condition. The law requires that parents be included in the 504 plan’s development and have a voice in the accommodations given to their child.
Preparing parents to advocate for their children in the 504 meeting is often part of the education provided by the hemophilia treatment center (HTC) team during comprehensive clinic visits. During these visits, you and the medical team can discuss suggested accommodations for your child.
A letter from the treatment team to the staff at your child’s school can help increase understanding and awareness of bleeding symptoms and the necessary response. This letter should include information about the diagnosis, treatment plan, first-aid guidelines, suggestions for participation in activities and physical education, and emergency bleeding management.
Many treatment centers have staff who may be able to meet with your child’s teachers and school nurse. This meeting may include a presentation about managing a child’s bleeding disorder at school. If possible, we request that every staff member who will have contact with the student attend the meeting. However, we have found that even a one-on-one meeting with the child’s teacher or school nurse can make a tremendous difference.
Whenever asked, we also participate in the student’s 504 planning meeting. In every contact with the school, we emphasize that communication is key and that parents are typically the first point of contact when a child has symptoms at school. We also inform them that while most bleeding episodes that happen at school require only basic first aid, a traumatic injury in one of the three high-risk areas (head, neck, and stomach) is potentially dangerous and may require them to call 911, so the entire staff needs to be aware that there is an emergency plan in place.
These interventions generally create a better understanding among the school staff, who are probably encountering a student with a bleeding disorder for the first time. When there is a plan in place and everyone feels prepared in case something happens, that sets your child up for success.
As always, consult with your child’s HTC team about any questions or issues that come up that you are uncertain about how to handle on your own. Our goal is for children to receive the accommodations they need to be successful in school, with as few restrictions on their lives as possible.
— Ashley Parmerlee, MSW, LCSW
Parmerlee is a social worker at the Indiana Hemophilia & Thrombosis Center in Indianapolis and a member of the Social Work Working Group.
— Lucy Ramirez, MSW, LCSW
Ramirez is a social worker at Rush Hemophilia and Thrombophilia Center in Chicago and a member of the Social Work Working Group.