Following the August 2012 webinar "Back to School: Preparing to Educate School Administrators on the Importance of Gluten-Free," NFCA invited listeners to submit their questions about advocating for gluten-free needs at school. The questions and answers from webinar panelist Gabriela Pacheco, RD, LD, SNS, are included here.
Q: My daughter is 7 and in the second grade. She has celiac disease. As far as I know, no one else at her school has celiac. My question is that if I looked into the 504, will the school even take this into consideration? The food is prepared elsewhere and then brought to the school. I would like to know if this is something I should look into. It would be great if she could have a hot meal from time to time and eat what her friends are having.
A: The 504 plan is for children with a disability or a food allergy with severe reactions, such as anaphylaxis. If a physician states in a diet prescription that your daughter would have adverse effects after ingestion or cross-contamination with gluten, then a 504 plan can be considered. Without the diet prescription the school can, but does not have to, modify meals.
If the meals are prepared at a satellite kitchen then brought to school, the modifications need to be made at that facility. Talk to the foodservice director for the district about modifications. If you do get a diet prescription from a qualified medical authority, then meals have to be modified, and some staff training needs to be done as well.
Speak to them about your daughter’s request to eat what her friends are eating. Being or feeling segregated can be very upsetting for a second grader. Maybe just a little communication with the foodservice director and staff serving at school will suffice. Create a partnership with them and also make sure your daughter is aware of some of the trigger foods and ingredients. A team approach, with or without a 504 plan, is the best approach.
Q: After the webinar, I called my school district to ask about their nutrition program/ regulations, and about filling out a 504 or diet prescription plan. The head school district nurse did not understand what a nutrition program was. Nor did she believe a 504 was needed, as the special diet "does not interfere" with getting an education. They said I can try talking to the head of the foodservice group, but that probably my daughter should only bring in all her meals.
As for Home Economics (as you had in your case study), she can do the baking and just not have to eat anything. They did not think exposure to gluten products (art supplies, etc.) if not ingested was a concern.
They really were not caring about "quality of life" aspects. They said because she's 12 years old, she should be able to handle it all. That may be fine for someone who's had more training dealing with her condition, but my daughter has only known for two months that she has celiac disease. She was diagnosed over the summer break and this will be her first time dealing in the school environment. I have not found any support so far, surprisingly even from the medical profession.
So, now what do you do? How much do you push? Is it really that they have no clue, or are trying to protect their hides? I still plan to write letters to all the school staff mentioned in the webinar to inform them of my daughter's condition, but I'm not sure anything more from their side will be done.
A: It sounds like a misunderstanding. School nurses should be aware of the school nutrition program; not so much how it works, but of the program in general, just in case there is a child with severe dietary nutrition needs.
She is right that if a life activity is not affected, without the diet modification, then a 504 plan is not necessary. However, if a medical authority writes a diet prescription stating that meals must be modified, the school has to make that adjustment. A 504 plan is only necessary if there is a disability OR the school and doctor feel one is necessary. So the school does not have to do a 504 plan.
If a child does not have severe reactions if a food is ingested, then simply working with the school foodservice director and front line cafeteria staff may be sufficient. Remember that in cases of food intolerance or allergy (unless it is severe), a school does not have to, but can, make modifications. Work with the foodservice director and staff to help your daughter make choices as to when she wants to eat school lunch. Often, the staff can work with you with a little training about celiac disease. Since your daughter is 12, even if she just found out she has celiac disease, she should be able to work together with the cafeteria staff as well, as opposed to a first grader with celiac.
As far as the home economics class, your daughter should be able to be part of the entire experience, and not just help prepare, but also enjoy the food. Talk to the teacher about making modifications and offer to either bring some of the ingredients or bring her a list of items with which your daughter should not be in contact.
I know it is frustrating to start the process, but communication is the key. Knowing whom to talk to is the first step. You started with the right person, but if you don’t get help there, definitely find out who the foodservice director is and go from there. As far as regulations, without the diet prescription, the school does not have to make modifications. Good luck!
Q: What if I have a child that has celiac disease and they want to eat hot lunch? Does the school have to provide gluten-free food? (I am asking this question In terms of legality).
A: It only becomes a legal issue if a medical authority writes a diet prescription stating that if that child eats anything containing gluten, he or she will have a severe reaction. This is where it starts. With that diet prescription, modifications have to be made and the school is liable for any errors. A 504 plan does not have to be written unless the child is also in special education classes OR the district and you feel one is necessary.
Without a diet prescription, you can work with the foodservice director and front line cafeteria staff to make sure they understand what that child is not supposed to ingest. The director is responsible for training the cafeteria staff, but a parent and student, if possible, should also be involved in selection of meals. If a child with celiac disease wants to eat what their peers eat, then a team approach to help improve their quality of life is key.
Remember that a food intolerance or allergy (unless it is severe) does not require a school to make modifications, but they can. It is important to form close relationships with those serving the students.
Q: Could you please expand on the comments regarding the stigma associated with the disability and offer suggestions on how parents can encourage cafeteria staff to help in avoiding this? One of our big concerns is that our children will be either very isolated or very obvious in having their needs accommodated. Are there ways the staff and our children can work together to minimize the disruption (and 'spectacle') from normal foodservice?
A: This is a huge concern for me – a child’s quality of life! When a child is either segregated or told they have to take a special tray, it may be embarrassing for them. Work with the foodservice director and staff to help plan meals that are either very similar or the same items on the tray (items without gluten are not obviously different all the time). For example, taco shells can be purchased and that could be a day the students eats a hot lunch.
We also have to remember that it is not always possible or easy to make exactly the same meals for special dietary needs children, but working with the staff will help. People who work for school lunch programs do it because they love children and are usually very willing to accommodate, while at the same time being careful not to subject a child to ingestion of foods they cannot have by mistake.
Try asking for the monthly menu a little early so that you and your child can plan on when it would be a good day to eat a hot meal at school. The cafeteria staff will then know when that day is and can plan ahead. Communication with those involved is essential.
Q: What do you suggest if the school administration is not supportive or responsive, especially in private or parochial school settings where the school district hierarchy is replaced by another entity, like a church or diocese, or the school itself is so small that the child's disability is considered a major 'inconvenience,' or the costs associated with accommodation are consistently cited as limiting to training and support?
A: Some small districts or parochial schools may not even be part of the National School Lunch Program. A child’s disability should be taken very seriously anywhere, no matter what size the school is. However, a disability must be defined by a physician.
If you have a diet prescription by a physician, then they need to take it seriously. Start with the administration, even if it’s off-site. If a diet prescription is written, then accommodations must be made and the cost cannot be passed on to the child or parents.
If the school is not part of the National School Lunch Program, then they do not have to, but can make accommodations. Find out who is in charge of the administration and most importantly, who prepares the meals. You may be able to just work with them even without a diet prescription.