Coming Back to the Table: Lessons Learned in the 504 Process

by Janette Kennedy, MAEd

Anxiety permeated the principal’s demeanor as she invited us into the conference room. The past months had been filled with increasingly contentious emails and meetings as we tried to develop a plan to ensure that my daughter would be both safe and included at school. You see, she has life-threatening allergies to multiple foods and there are things she needs to survive that other children, and even those with food allergies, may not need. Obviously, we had let the process devolve to this moment. Here we were though, back at the table, and we learned a great deal in the process.

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Communication, planning, and preparation is the only way for my daughter to be able to safely participate in a world that contains her allergens nearly everywhere we go. Our goal was to have the necessary precautions and preparedness in place so that she and her teachers could focus their attention on learning and growth.
           
To achieve this, we developed a 504 plan with the school: a legal document based on the Americans with Disabilities Act (ADA) that includes accommodations and identifies who is responsible, ensuring that each student with a disability has “their educational needs met to the same degree as students without disabilities” and “equal opportunity to participate in the (school’s) program” as described in Questions and Answers on the ADA Amendments Act of 2008 for Students with Disabilities Attending Public Elementary and Secondary Schools.
           
The plan is designed by a team, including people who know the school’s programs and people who know the student, especially the parents. At its heart, it is an individualized plan addressing a specific student’s unique disability needs. It is not the forum to create policy for the entire school.

Benefits

For us, the benefits of having a 504 plan have been:

• formalizing communication,
• enabling the whole team to consider where a student with a food allergy might experience unacceptable levels of risk and how to address that,
• providing a formal document of accommodations that all school programs need to comply with, including most contracted out transportation and extra-curricular activities, or any organization that receives material support from the school, like the Parent Teacher Association (PTA),
• increasing consistency of management strategies, even when school policies change,
• easing transfer between schools,
• and providing a forum for the team to find solutions to ensure that accommodations are not unnecessarily restrictive or excluding.

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Even with a 504 plan, the crucial part of safety and inclusion in school is to keep the communication with your child’s school as open and clear as possible. This may mean taking steps to re-open lines of communication when things have gotten contentious.

Tips for Solution-Focused Communication

Although I have often learned the hard way, I gained a few tips on preventing breakdowns in communication and rebuilding communications when things have gotten contentious:

1. Volunteer at the school so you can build relationships apart from the issue of food allergies.
2. Be proactive with communication. Check in with teachers at the beginning of the year and throughout the year to ensure that you have similar understandings. Teachers get bogged down in a lot of details and we would all rather communicate about upcoming solutions rather than dealing with past mistakes. One good strategy is to send an email to check in on plans for upcoming special events.
3. Stay solution-focused, even when something has happened not in compliance with the 504 plan’s accommodations. Sure it needs to be documented in case a pattern develops, but communication is more easily built on helping the school comply than if they fear you are trying to catch them in a misstep.
4. Help your school understand the law by sharing official documents with them. Print out the Office of Civil Rights policy guides and other relevant policies and laws for your state. Highlight specific phrasing that is relevant. In our experience, many administrators have very little training on 504 plans specifically. Encourage them to do research on the documents too. You want them to learn about your child’s rights.
5. Practice phrasing that is assertive, but matter of fact and even-keeled ahead of time. It is often hard to think of phrasing in the moment that stands your ground without escalating the situation needlessly. Questions that reference official documents, the laws, or build on previous agreements are a good place to start.
6. Bring someone with you to the meeting. Having an extra person by your side can really help, especially if you have prepared together ahead of time. There are also non-profits that provide advocacy assistance, like Support & Training for Exceptional Parents (STEP), Inc. and the Food Allergy Alliance of the Mid-South, and they can help you find the resources you need for the process go more smoothly.
7. Communicate with your school’s 504 coordinator about the process and eligibility, rather than your doctor or the school nurse. Nurses and doctors have experience with medical questions, but a 504 plan is a process centered on equal access law, civil rights, and the school programs.
8. Have your doctor write a letter, or draft one that he or she is comfortable signing. This letter should include the diagnosis and instructions for management. Keep these instructions broad, like needing to have access to epinephrine at all times. This way the school and the team can determine the best way to achieve your doctor’s instructions given the unique environment and logistics of the school. It also keeps the doctor from having to negotiate the details of the plan with the school.
9. Write a parent statement and consider sharing it, along with the doctor’s letter ahead of time. Include a brief history of the most severe and surprising reactions, the usual symptoms, and the things you do to keep your child safe. Prepare yourself emotionally to talk about your child’s reactions in a way that conveys the seriousness of them directly. As parents, we sometimes have so many emotions surrounding these traumatic experiences, that this is really hard to do. Practice your wording ahead of time so that you make sure you convey it accurately and are prepared to continue the conversation afterwards.
10. Document and keep everything. It has been helpful to go back to a document, and realize that the teacher and I just had different understanding of the same phrasing. Also, if someone tells you something verbally, send them an email to document the conversation, and to confirm that you understood it correctly. This documentation will also be vital if the situation ever requires outside resolution.
11. Know and respect your limits. Do not agree to making cupcakes for every birthday or running up to the school to check labels at the last minute every time there is a surprise treat, unless you really want to and can. (Check out page 31 of the Parent and Educator Resource Guide for more on this issue of requiring parent assistance to make opportunities accessible.)

           
In all of this, you absolutely must take extra care of your mental and emotional health. Really, it might actually take zen master levels of self-control at points. Precisely because you are advocating for your child’s survival and long-term development though, it is worth it to take the time to step back, breathe, and seek out the support you need. If things fall apart, that is okay too. You take a break, make adjustments, find some common ground, and go back in and find a way forward. That’s always easier said than done, but it can be done.

For a list of helpful resources about the 504 process and to help plan for upcoming meetings, visit FAAM's Back-to-School Resources.

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​About the Author: With a background in special education and mother of kids with food allergies, Janette has navigated the food allergy world and 504 process in New York, Virginia, and Tennessee. She is a recent graduate of the Volunteer Advocacy Project, and is excited to share the many insights gained from her missteps as well as successes. She is also an MFA candidate in Writing. FAAM thanks Janette for answering questions as our "504 mentor" and contributing to Food for Thought and list of resources for 504 plans.