Students with Celiac Disease
For most children, school is a place of learning and socializing. It is important for them to feel safe and welcome in this environment. Parents face a number of adjustments when the kids go off to school. Having a student with celiac disease presents another set of challenges. Not having control over the food or food products that the child may be exposed to can be uncomfortable. While your child may be ‘out of sight’ you can still survey the landscape and remove, or limit, the opportunities for cross-contamination.
In this section, guidelines are provided to assist parents and family members in navigating the school setting. Unlike the gluten-free diet which must be followed, ‘one size’ does not fit all when it comes to working with teachers, principals, or food service staff. Only you can decide the best approach based on the needs of your child and your family.
Children with Disabilities
Section 504 of the Rehabilitation Act of 1973, a federal civil rights statute, is designed to prohibit discrimination on the basis of a disability in an educational program or institution. This prohibition extends to any educational institution accepting federal funds. Students with a disability under this Act are afforded accommodations and modifications to their educational program to ensure equal access. Celiac disease may be considered a disability under this law.
Public schools and other institutions participating in federal programs, like the National School Lunch Program, must provide equal access to and participation in, such programs. A 504 plan is intended to eliminate barriers that would prevent a student from full participation in programs or services which are available to the general school population. The National School Lunch Program is one of those programs.
Celiac disease is NOT specifically listed under the rules of the National School Lunch Program, Section 504, the Americans with Disabilities Act or its implementing regulations.
Know Your Rights
The Department of Education (ED) Office of Civil Rights regulations define a physical or mental impairment as any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genito-urinary; hemic and lymphatic; skin; and endocrine; or any mental or psychological disorder, such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities. The regulations do not spell out every disease and condition that may constitute physical or mental impairments. Section 504(a) of the Rehabilitation Act of 1973, as amended, 34 C.F.R. 104.3(j)(2)(i) and the Americans with Disabilities Amendments Act of 2008 (ADAAA), Title II regulation at 28 C.F.R. § 35.104.
Major life activities, as defined in the Section 504 regulation, include functions such as caring for one’s self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working. Again, this list is not exhaustive. 34 C.F.R. 104.3(j)(2)(ii) and the ADA, Title II regulation at 28 C.F.R. § 35.104. For these purposes, the ability to learn is the most important.
In order to qualify for special dietary accommodations under the school lunch program a child will to have his or her disability documented. How do you do that? This will depend on the requirements of the school district and the specific state. The information you should have available to school officials includes documentation stating:
- The child’s disability
- Explanation of why the disability restricts the child’s diet
- The major life activity affected
- Foods to be omitted, and
- The food or choice of foods to be substituted.
In addition, you will need to have documentation as to how celiac disease adversely affects the child in the educational setting. Some states have a specific form which must be completed by the child’s physician, while others will require the physician to detail the information referenced above in a letter. The determination of whether a student has a physical or mental impairment that substantially limits a major life activity must be made on a case-by-case basis according to individual school district guidelines.
Though schools may choose to provide GF meals without such documentation, they are under no obligation to do so. And in our experience this rarely happens. The school or state form detailing the child’s disability and medically prescribed diet may be sufficient to obtain GF lunches.
National School Lunch Program
The National School Lunch Program (NSLP) is administered by the Food Nutrition Services a division of the U.S. Department of Agriculture. Like other federal programs, the NSLP prohibits individuals with disabilities from being excluded from participation in, or denied the benefits of programs receiving federal funds from Food and Nutrition Services. Documentation of the disability would be the same as noted previously. However, policies differ among school districts and school divisions and a 504 plan may also be required.
Section 504 Plans
Section 504 refers to the part of the Rehabilitation Act of 1973 that prohibits discrimination based upon disability. This section of the civil rights statute requires the needs of students with disabilities to have equal access to programs and services as those who are not disabled.
A 504 plan addresses more than just gluten-free meals, it outlines a plan of services for students in the general education setting. It identifies reasonable accommodations to help the child succeed in the classroom. For a student with celiac disease a 504 accommodation planwould address:
- Objectives and goals of the plan
- Meals and snacks
- Bathroom access
- Classroom activities (art projects)
- Field Trips / extracurricular activities
- Emergency evacuations / shelter-in-place
- Parental notification
- Emergency contacts
The ACDA has prepared a model 504 plan in conjunction with the Disability Rights Education and Defense Fund (DREDF). A family has shared the plan currently in place for their child with celiac disease.
The plan also provides accountability. If the school fails to meet the requirements of the plan there are procedures to see that it is enforced. In the absence of a 504 plan, there may be no documentation of the school’s responsibility to meet the student’s needs.
Parents often raise concerns about their child being labeled as ‘disabled’ and whether it will be included in student records. The Family Education Rights and Privacy Act of 1974 (FERPA), bars information relating to a child’s disability from being included on a student’s transcripts. The law also states that specific student information and records may be shared with school personnel only under certain need to know circumstances.
Requesting a 504 Plan
The process starts with the parent or guardian contacting their child’s school and requesting a 504 evaluation. These words, “I am requesting a 504 evaluation for my son / daughter,” sets a process in motion which has specific requirements which must be met. Once the evaluation request is made a meeting will be scheduled. Parents are notified of the meeting, but their participation is not required. A multidisciplinary team may be comprised of the principal, a counselor, nurse, and teacher (it may include others) review the request and determine whether or not the child qualifies for a 504 plan, if so, the team will then draft the plan. After the plan is in place, it will be subject to annual review, and can be revised if necessary.