As a LQT patient-parent as well as an educator-advocate of students facing chronic medical conditions in a large school district, I have learned that “peace of mind” can go a long way in learning to thrive despite medical challenges. We often feel sidelined by our medical conditions and anything but normal. School plays a crucial role in creating much-needed normalcy for the student/family who may feel life is beyond control when facing these challenges.
I was very fortunate that my child’s school district recommended a 504 plan to address, not only AED accommodations but also the combination of beta-blocker side effects and unmedicated ADD symptoms with which my son was struggling. However, many LQT families I have had met at SADS Conferences have indicated that they have been told by their school that their child did not need a 504 plan to implement a health care/safety plan including AED access and training.
As an educator, I know that it is a pain to go through the 504 process and much easier just to tell a parent, “No need to worry…We don’t need a 504 plan to provide those accommodations.” I would recommend parents of LQT students with an AED prescription provide a written request for a 504 plan since an AED is something that the student needs to receive an appropriate education. You are NOT asking too much.
504 plans are typically considered when a student has an impairment that substantially limits major life activities to help “level the playing field” for that student. Restriction or limitation from many normal school activities due to a potentially life-threatening condition should clearly fit that category. A 504 plan is a legal document (unlike many informal school safety plans) which the school must take seriously. With a 504 plan, a school is legally responsible for purchasing an AED as well as maintaining it and making it publicly accessible (including staff trained to use it during all school activities in which that student participates).
Civil rights are not optional. A child has a right to an evaluation before schools determine if he/she is eligible under Section 504. If refused, the district must provide the parent with notice of procedural rights. At the point, a parent may request a hearing by the district’s Section 504 coordinator and/or, if necessary, follow up with the Office of Civil Rights.