School Issues: Getting Your Child’s Educational Needs Met

Although the subject is complex and may be confusing, it’s important to be aware of the process for meeting the needs of your child with Congenital Sucrase-Isomaltase Deficiency (CSID) in the school setting. Taking medication at school, meeting dietary requirements, attendance, schoolwork, and the ability to perform at grade level may all be affected by your awareness of your child’s rights.

Busy, budget-strapped school systems and administrators may not always have your child’s best interests as a priority. It is not that they don’t care – of course they do, but it is a matter of competing priorities, special interests, and needs. Parents or caregivers need to be proactive advocates for their children, and it starts with learning these important issues. Your child’s best interests are in your hands. When you stand up for your child’s needs, you set a good example for your child to follow.

Schools may or may not establish a plan for your child’s unique needs related to CSID. For various reasons, some schools may even discourage your efforts. Having a basic understanding of these plans gives you the power and tools to ensure your child’s unique medical and educational needs are met.

At the very least, you should provide the school with a written document detailing your child’s special needs. The written healthcare plan for school personnel should contain:

  • Documentation from a physician regarding a CSID diagnosis
  • A brief medical history
  • Your child’s specific, special needs
  • Medications or medical procedures required during school hours
  • Special dietary requirements
  • Precautions and possible problems and solutions
  • Important contact information (for example, parents, caregivers, other emergency contacts, pediatrician, gastroenterologist, registered dietitian)

Beyond this necessary medical information, you should also be aware of the different types of written healthcare plans that may be used in a school setting. Some children with CSID need additional support and accommodations in a school setting, while others do not. The following information is provided in case you feel your child may need special accommodations.

Individualized education programs (IEPs), Section 504 plans, and individualized healthcare plans (IHCPs or IHPs) are separate plans with distinct requirements, although there can be some overlap between them. Each plan creates a legal document that outlines your child’s specific needs and needed accommodations while at school. You and the school generally work together to create the plan for your child. These documents legally bind the school to comply with the requirements outlined in the written plan. These documents are only required in a public-school setting. Private schools are not required to make the same accommodations as public schools. There is often confusion about the responsibilities of private schools and their ability to support children’s healthcare needs. It is important to speak with the administration of any private school you are interested in your child attending to see how the school would meet your child’s unique needs.


Individualized Education Programs

An IEP is a federal regulation put into place to guarantee an education for children with special needs (which includes medical diagnoses). Individualized education programs may be used in private school settings where a Section 504 plan may not be accepted. The IEP was developed to ensure that a child who has a disability recognized by the law and is attending an elementary or secondary educational institution, receives specialized educational instruction and necessary services. To be eligible for special education services, it is necessary to prove that the child has a disability that interferes with his or her education and performance. In general, IEPs are for children who are having trouble with learning and need extra help – more help than the regular classroom teacher can provide.


Section 504 Plans

Section 504 is an amendment to the Rehabilitation Act of 1973 that incorporates directives of the Americans with Disabilities Act Amendments Act. Section 504 is a civil rights law that applies to all institutions receiving public funds, including public-school systems, and is designed to protect people with disabilities from discrimination, including children with special medical needs. Section 504 plans are developed for children who have a medical diagnosis that may interfere with their education. Section 504 plans usually ask the classroom teacher to make special accommodations for that child.


Individualized Healthcare Plan

Some state laws require a healthcare plan to be established for each student who requires medication and/or treatment while attending school. This could be an IEP, Section 504 plan, or IHCP (IHP). Individualized healthcare plans give detailed information about the medical services children, such as those living with CSID, require while attending school.

IEP504 Plan
Governed by IDEA (Individuals with Disabilities Education Act)Governed by ADA (Americans with Disabilities Act)
Student has a disability as defined by IDEAStudent has a disability as defined by ADA
Student requires individualized instruction as outlined by all components of the IEPStudent requires accommodations only as outlined by the 504 plan
Special EducationGeneral Education


Choosing a Plan

How do you decide whether a child needs an IEP, Section 504 plan, or IHCP? Generally speaking, the question of whether a child needs one of these plans is determined by the individual needs for special accommodations. Does your child need something different than what is already available at the school? If there are already systems in place to meet your child’s healthcare needs, then an IHCP might be sufficient. Most schools have systems in place to deal with medication administration, but a child with CSID may need special accommodations, such as having a refrigerator to store medication, relaxed restroom privileges, or assistance with cafeteria food selections. In that case, an IEP or Section 504 plan is probably indicated. The primary distinction between these two plans is the child’s need for specialized educational instruction. If your child needs specialized instruction, then the IEP will be beneficial. Otherwise, a Section 504 plan may be a good fit.

So, in light of the nuances of dealing with a school system, where do you start? If your child has a chronic health condition such as CSID and may need special accommodations during the school year, the first step is to request in writing a meeting with the teacher. Send a copy of this letter to anyone else you feel is appropriate (for example, school nurse, principal, guidance counselor, cafeteria manager). The letter should be formal, not a quick note sent in your child’s folder or via email. The letter starts the clock on a timeline of actions the school must take to ensure the child’s needs are handled in a timely manner. Ideally, this should be done one to two weeks before a new school year begins.

Outline your main concerns in the letter and state that you are requesting a team meeting to discuss the need for an IEP, Section 504 plan, or IHCP for your child. The school system is required to respond to you and schedule a meeting within a short period of time. Your child’s physician can also help by providing a letter stipulating what your child’s needs are.

Designing a well-written plan that is likely to be accepted by the school and meets your child’s current and future needs requires patience, knowledge, and good communication skills. Here are some general guidelines for good communication with teachers and other school staff.

Communicate up front about your child’s needs. Before school starts, initiate a discussion about your child’s needs with the school staff. Be sure to document everything in writing, especially agreements that are made. Because CSID is a rare disorder, you need to provide written documentation about the disorder. Also, be sure to tell the school about your child, not just the CSID diagnosis. For example, “My daughter is artistic, loves math, and is a great big sister. She also has a rare genetic condition called CSID.” You want your child’s teacher to see your child as more than a diagnosis, so be sure and present your child that way.

Request, don’t demand. Some people go into a meeting with school staff with a long list of demands and an attitude that says, “Do it or else.” Your attitude is important because it sets the tone for both the current meeting and perhaps your relationship with the school for several years. There is an art to being an effective advocate for your child; it takes a bit of finesse. You want to portray yourself as firm, but not demanding; friendly and cooperative, but not a pushover. You should present yourself as a team player. It can be a fine line at times. One motto to remember is, “be assertive, not aggressive.” An example of being aggressive is telling others what they must do, and this position is seldom effective. Being assertive is telling others what we can do in the best interest of a child. Sharing what we need and phrasing it politely generally results in cooperation. Most teachers are eager to do what’s right for your child when asked nicely and within reason. A cooperative parent asks, discusses, negotiates, and problem-solves.

Understand the system. If a child requires medication to be administered at school, be sure you fully understand the school policies on medication administration. How should the medication be labeled? Where will it be stored? Does it require refrigeration? Who will administer the medication? The child, teacher, school nurse, or office staff? What defines an emergency for your child, and what is the emergency response plan? In what circumstance should you or a caregiver be contacted? Always be available to school personnel to answer questions and concerns.

Be realistic. Yes, your child’s medical needs should be met at school. However, it is important to remember that your child’s teacher is not a healthcare professional. Assure your child’s teachers that you do not expect them to assume this role. Let teachers know they need to relay any medical information to you in a timely manner. Assure teachers that they are seen as the educational professional and that your child’s special needs are manageable and are not overwhelming. Be positive. You want to have a good relationship with your child’s teachers. Find out what you can do to support them. This may mean serving as a room parent or volunteering regularly in the classroom.

Some of the general guidelines for good communication with teachers and school staff also apply to communicating with parents of your child’s classmates. It may be beneficial to alert other parents to the fact that there is a child with special food restrictions in the classroom, much like the communications about food allergies. This communication can be done via the teacher, directly to the room parent, or via a teacher- or school-approved personal letter to parents. As with all other communications, it is important to be specific, provide clear and simple suggestions, and to be gracious, being careful to request politely and not demand.