When Madeline was first diagnosed with T1D, one of the first contacts I made was to her school. I sent them an email from the ICU family resource room, outlining the events of her diagnosis and the steps we needed to take before she could return to school. Oh, and I asked them to convene a 504 team as soon as possible.
What is a 504 team? What is a 504 plan?
The Rehabilitation Act of 1973 includes Section 504, which is a component of the law designed to protect the rights of individuals with disabilities who participate in programs and activities that receive federal funding through the US Department of Education. This includes the rights of students with disabilities who attend schools receiving federal DOE funding. The definition of a disability was revised in the 2008 Americans with Disabilities Act Amendments Act, expanding the definition of disability already outlined through Section 504.
Basically, a student qualifies for a “504 plan” when there is evidence that a physical or mental disability exists that substantially limits a major life activity—even if the impact of that disability is minimized by mitigating factors or is episodic in its presentation—and that requires the provision of accommodations and/or services in school.
I will admit that I felt guilty asking Madeline’s school to convene a 504 team. After all, these people were my colleagues and friends before they were her teachers. I knew them personally and had no concern about their willingness to learn about T1D and how to meet her needs in school. It felt to me that by asking for that 504 team to meet, I was somehow implying a level of distrust or that I was expecting an adversarial response from them. And yet, I also felt very strongly that her school team must consider her eligibility for a 504 plan. It seemed necessary.
As it turned out, the 504 plan really was necessary, and not just for peace of mind. In our situation, we really didn’t need it to guarantee that the school would meet Madeline’s needs, even though that is its legal intention. For us, the 504 plan was necessary because it provided a detailed blueprint of the who, what, when, where, why and how of managing Madeline’s medical needs in school.
In my internet travels recently, I’ve noticed many people posting their stories about their negative experiences with their children’s schools relative to T1D management. There appears to be significant misunderstanding about the laws that protect children with disabilities in schools, on both sides of the caretaker fence. The disagreements and battles that families and schools have with each other leads to feelings of distrust, suspicion and resentment that undermine their ability to collaborate as partners in the best interest of the child with T1D. It shouldn’t be this way. Yet, as much as I know that there are school districts out there that don’t consistently uphold the law, I also know that we parents have a role in this situation as well. It can be very intimidating for parents to advocate for their children’s needs and rights in a system as overwhelming and complicated as a school district. But, it can be done: we can secure 504 eligibility for our children, and help develop and implement an effective plan of care for them in school, when we work in partnership with our schools.
Here’s what I have done that has made Madeline’s 504 journey a successful one. I did my research. I found out as much as I could about Section 504 and the ADA Amendments Act, learning about the protections it provides and how to navigate the eligibility determination process in Madeline’s school district. I sought information from parents of children with T1D as well as from other sources (here and here) as to the procedures and accommodations that would be helpful to include in Madeline’s 504 plan. In doing that research, I found out that no 504 plan is identical—that the things that need to be included in a plan for, say, a second grader can be quite different than those in a plan for a ninth grader—and that been-there-done-that parents have great ideas that had not crossed my mind. I strove to collaborate with Madeline’s school to develop a plan that reasonably protects her rights and meets her needs. I figured out what I could do to support the school to be successfully able to carry out the plan. I am proactive: I remain in regular contact with key school officials to monitor the effectiveness of the plan, and I ask Madeline how the plan is working for her. When issues arise, I promptly address them with the school in a way that preserves our essential working relationship and will result in a reasonable, fair outcome for Madeline. While I want to be perceived as a knowledgeable advocate, I too want the school to see me as a collaborator, not as an overreactive parent whose first line of defense is to call the DOE at the slightest hint of a problem. Ultimately, we’ve achieved a 504 plan that makes sense, can be carried out successfully, and clarifies the important details that will support Madeline’s education and also keep her alive.
In 2013, should you consider a 504 plan for your child?