Ketogenic Meals at School: Do You Know Your Legal Rights?
Author: Dawn Martenz
School years are an exciting and integral part of childhood. Yet for students who manage health conditions with medically supervised ketogenic therapies, the school environment can sometimes be challenging to manage. Families are often concerned with how mealtimes will be managed and how compliance with ketogenic therapies will be maintained. It is most common for families to provide a ketogenic bagged lunch, packed at home, at the families expense. While this is a great option, we want to ensure that you are well informed about students rights to receive ketogenic meals while at school. A few reasons why obtaining meals at school may be beneficial:
- Helps create a more inclusive and engaging environment for the student who wishes to buy school meals as their peers do.
- Can reduce financial burden for families that may find it difficult to afford ketogenic formulas and food.
- May help students begin to take steps towards independence and self-advocacy by practicing a real world scenario.
While the initial reaction to the thought of school staff preparing ketogenic meals may seem impossible to imagine, it is our goal to ensure you are aware of this option. Specific staff training and plans are developed (similar to the training and education staff receive to administer emergency seizure medications and AED’s), for each individual by the school team and family. It is also important to keep in mind that situations will change as children grow and progress towards independence. While it can be intimidating to think of staff preparing meals for a 6-year-old kindergartner, the option for assistance may be welcomed respite once the student reaches high school. Anyone can learn how to prepare ketogenic meals properly, just as you did! Many school nutrition employees are already familiar with modified meals for medical reasons, ketogenic therapies are certainly not the only reason for meal accommodations.
In the United States, it is a federal right to receive safe and appropriate meals while participating in the School Meal Programs. This means, schools are legally required to provide ketogenic meals, at no extra charge (beyond the cost of a typical school meal). Any student, with a disability which restricts their diet, is eligible to receive this accommodation for the National School Lunch Program (NSLP) and the School Breakfast Program (SBP).
As a parent or caregiver, it is imperative to educate yourself on these policies then advocate for appropriate meal accommodations to be put in place for your student’s unique needs. The information provided in this article is for information and education only and does not guarantee the described services will be provided. This article should not be considered legal advice. Accommodations in school settings can sometimes take a significant amount of time and effort to put in place and very much depends on a partnership between the parents, students and school team members. As stated in: Accommodating Disabilities in the School Meal Programs: Guidance and Questions and Answers (Q&As) Memo Code: SP 26-2017 Date: April 25, 2017;
The process of providing modified meals for children with disabilities should be as inclusive as possible. It is essential that SFAs (school food authorities) work collaboratively with parents and guardians to ensure children receive a safe meal and have an equal opportunity to participate in the School Meal Programs. FNS (Food and Nutrition Services) recommends using a team approach that includes parents and guardians and (as age-appropriate) the child, when providing modified meals. If a team (Individualized Education Plan (IEP) or 504) already exists, the SFA may use this team to address a child’s nutritional needs. (1)
The most effective team will include school food service staff, school administrators, school medical personnel, parents or guardians, children (when age-appropriate), and other school officials with relevant experience, such as school nutritionists. (1)
Laws Protecting Individuals with Disabilities
Under the ADA, anything that substantially limits a major life activity (most physical and mental impairments) constitutes a disability. This includes conditions that impair immune, digestive, neurological, and bowel functions, as well as many others. (1)
We encourage you to collect as much relevant information supporting the meal accommodations you are requesting and provide all required documentation justifying your requests. First, it’s important to clearly understand the federal laws and mandates that describe the rights and privileges of individuals with disabilities and what must be done to protect those rights and privileges.
- The Rehabilitation Act of 1973 (Public Law 93-112) – prohibits discrimination on the basis of disability in any Federal Government program that receives Federal financial assistance.
- Americans with Disabilities Act of 1990, as amended (Public Law 101-336, 42 U.S.C. 12101, ADA) – prohibits discrimination based on disability in the provision of State and local government services, including services provided by public schools. Title III of the ADA prohibits discrimination based on disability by private entities offering public accommodations, including private schools.
- Individuals with Disabilities Education Act of 1990 (Public Law 94-142, 20 U.S.C. 1400, IDEA) – IDEA requires each public agency to take steps to ensure children with disabilities have an equal opportunity to benefit from extracurricular services and activities, including meals.
- USDA Regulatory Requirements (7 CFR 15b) – The USDA describes their requirements in: Nondiscrimination on the Basis of Handicap in Programs or Activities Receiving Federal Financial Assistance (2)
The most comprehensive document explaining these rights and how they apply to ANY meal accommodation is:
This document is your #1 resource for learning about meal accommodations, you should invest the time to fully read and understand the guidelines contained in this document. Do not hesitate to bring this with you when discussing your requests with the school team. Click on the image above to view and print the full PDF.
IEP’s and 504 Plans
Many schools will choose to implement a formal plan, or a written agreement, to describe and implement accommodations. The two major types of formal plans are: Individualized Education Plans (IEP) and 504 Plans. They are similar in that they both provide the framework to describe accommodations required to support students in school, but different in that an IEP is designed for special education needs and a 504 is designed to support accommodations for any disability without special education needs. Only one of these plans will be put in place. Rarely, a school team may determine no formal plans are required to support modified meal accommodations. Here is a short comparison of IEP’s and 504 Plans.
IEP’s: Designed for students who require special education needs and are implemented at no cost to the family. They comply with The Individuals with Disabilities Education Act (IDEA). To receive an IEP, there are two requirements:
- A student has one or more of the 13 disabilities listed in IDEA. The law lists specific challenges, like learning disabilities, ADHD, autism, and others.
- The disability must affect the student’s educational performance and/or ability to learn and benefit from the general education curriculum. The student must need specialized instruction to make progress in school.
504 Plans: Describe the best plan to remove barriers for students with disabilities, and will provide services and changes to the learning environment to enable students to learn alongside their peers. The name “504 Plan” is derived from Section 504 of the Rehabilitation Act of 1973. To receive a 504 plan, there are two requirements:
- A child has any disability. Section 504 covers a wide range of different struggles in school.
- The disability must interfere with the child’s ability to learn in a general education classroom. (This does not imply special education services are needed. For example: A student who is a typical learner but has a vision impairment. Modifications such as large print text and visual aid technology are put in place so the student is able to remain in the general education classroom.)
Section 504 has a broader definition of a disability than IDEA. (It says a disability must substantially limit one or more basic life activities. This can include learning, reading, communicating, and thinking.) A student who doesn’t qualify for an IEP might still be able to receive a 504 plan.
There are several steps that parents and caregivers need to take to begin the process of schools providing meal accommodations beyond implementing IEP’s and 504 plans. #1 is directly quoted from the USDA document linked above.
1. Obtain a written medical statement signed by a state licensed healthcare professional. The medical statement must include:
- Information about the child’s physical or mental impairment that is sufficient to allow the SFA to understand how it restricts the child’s diet.
- An explanation of what must be done to accommodate the child’s disability.
- The food or foods to be omitted and recommended alternatives, in the case of a modified meal.
In some cases, more information may be required. For example, if the child requires caloric modifications or the substitution of a liquid nutritive formula to accommodate a disability, this information must be included in the statement.
Note: The State agency may not require the written medical statement to provide a specific diagnosis by name or use the term “disabled” or “disability,” though the State licensed healthcare professional may use these terms when submitting a medical statement. (2)
2. Develop a cyclical meal plan with the school team, this may be a collection of 5-10 meals, or however many you are willing to create, that the student enjoys eating. It is helpful to start with food the school already has access to, but does not need to be limited to these foods. There are a variety of prescription ketogenic formulas and foods that may be used to supplement the foods available through the school. The school is responsible for obtaining these items and providing them at no extra cost to the student beyond the cost of a standard school meal. There are a variety of ways schools are reimbursed for modified meals. It is important to know; it is the responsibility of the school to obtain funding, not the family.
Keep “meal assembly” in mind rather than baking or cooking from scratch. It is important to take into account food storage limitations, ease of preparing the meals, and time constraints of the school day. Designing meals that work well in the practical application is critical.
3. Work with the school team to develop staff training and education protocols for preparing ketogenic meals properly. Provide the appropriate meal calculations, measurements or serving sizes and required equipment (gram scale, spatulas, etc.) to the staff who will be preparing the meals. Several staff members should be fully trained to prepare the meals. Parents and caregivers must be fully engaged in helping to educate the staff.
4. Determine if documentation procedures and safeguards are needed to ensure the meal accommodations are followed on a regular basis. Discuss the best system for documentation and communication to the parents and caregivers.
5. Always have a backup plan and plan for the unexpected. Discuss how meal accommodations can be met in the event of field trips, class parties, or other non-standard school day activities. Also discuss how accommodations are met in the event of staff absences.
This is not a comprehensive, complete list for every student and situation. The dynamics of school environments and needs for each individual will vary greatly, each school district will have unique ways of implementing these accommodations. While some families will find this process quite simple and straightforward, others will unfortunately experience resistance and endless amounts of red tape.
We hope this article is helpful in educating parents and caregivers on the rights and privileges of students with disabilities. We especially would love to know if you have successfully implemented a ketogenic meal accommodation in the school setting. Please comment and share your experience and tips!
1. Accommodating Disabilities in the School Meal Programs: Guidance and Questions and Answers (Q&As) Memo Code: SP 26-2017 Date: April 25, 2017
2. USDA-FNS Accommodating Children with Disabilities in the School Meal Programs Guidance for School Food Service Professionals. United States Department of Agriculture Food and Nutrition Service 7/25/2017
Reviewed: 08/23/2019 DM
Our son, Owen is 15 and has been on the Ketogenic Diet since he was 3. We have not reached out for much support while we have been on our journey, but wanted to say we appreciate what you are doing for families that are committed to using this diet to help their kiddos. Our son was diagnosed with Dravet at age 3 and is now 15.
Thank you! You are appreciated!
Dana and Eric Ferrier
It makes our day to hear this appreciation!
Best wishes to your family.
Jim Abrahams and the Charlie Foundation
Hi Dana, Thank you! I’m glad to hear about your sons success. My daughter, Charlotte is 14, also Dravet’s Syndrome. Hugs from my family to yours!
Thank you for this article. I am not a parent but a Ketogenic Chef. I would love to see the changes made in the school systems to reduce the amount of highly inflammatory ingredients used in schools today. Do you know if the Charlie Foundation has a certification for non professional health care associates? I live in Hawaii and work with a RN trained by the Charlie Foundation. I do nutrition education workshops around the island. It would be great to do a food demo at the schools and bring this information in front of school leaders, faculty and students.
Hello Ikaika, Thank you for your comment! We hid the last sentence of your comment since it included personal info. We would also love to see changes to the school lunch menus, and demos would be fantastic!