School Issues: Getting Your Child’s Educational Needs Met

Although the subject is complex and confusing, it’s important for you to be aware of the process in getting the needs of your child with CSID met 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 their 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/caregivers need to be proactive advocates for their children, and it starts with learning about these important issues. Your child’s best interests are in your hands. As you set a good example of standing up for your child’s needs, you’ll be teaching your child how to look out for himself/herself as well.


Schools may or may not initiate the process of putting a plan for your child’s unique needs related to CSID in place. Some schools may even discourage you for various reasons. Having a basic understanding of these plans will give you the power and tools to ensure that your child’s medical and educational needs are met at school.


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
  • Special dietary requirements
  • Precautions and possible problems and solutions
  • Important contact information (parents/caregivers, other emergency contacts, pediatrician, gastroenterologist, registered dietitian, etc.)


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


Individualized Educational Plans (IEPs), 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. Parents/caregivers and schools generally work together to create the plan for the 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 when it comes to private schools and their ability to serve children’s needs in this area. It would be vital to speak in depth with the administration of any private school you are interested in your child attending to see how the school could meet your child’s needs.


Individualized Educational Plans (IEPs)

An IEP is a federal regulation put into place to guarantee an education for children with special needs (which includes medical diagnoses). IEPs may be used in private school settings when a 504 plan may not be accepted. The Individualized Educational Plan (IEP) was developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution, receives specialized instruction and related 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. IEPs may be used in private school setting when a 504 plan may not be accepted.

504 Plans

504 Plans are also federal regulations put into place to guarantee an education for children with special medical needs. 504 Plans are founded in Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA). 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.


504 Plans are for those children who have a medical diagnosis that MAY interfere with learning. 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 in place for all students who require medication and/or treatment while in school attendance. This could be a 504 Plan, IEP, or another document called an Individualized Healthcare Plan (IHCP or IHP). IHCP’s give detailed information about the medical services your child will require at 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, a 504 Plan, or an IHCP?  Generally speaking, the question of whether a child needs an IEP, a 504 Plan, or an IHCP is that of special accommodation. 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 504 Plan is probably needed. The primary distinction between these two plans is the child’s need for specialized instruction. If your child needs specialized instruction, then the IEP will be beneficial. Otherwise, the 504 plan may be a good fit.


So, in light of the nuances of dealing with a school system, where does a parent/caregiver start? If your child has a chronic health condition like CSID and may need special accommodations during the school year, the first step is to request a meeting in writing with the teacher. Copy this letter to anyone else you feel is appropriate (school nurse, principal, guidance counselor, cafeteria manager, etc.). This needs to be a formal letter, not a quick note sent in your child’s folder or via email. This starts the clock on a timeline the school must work within to ensure the child’s needs are handled in a timely manner. Ideally, this should be done 1-2 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, a 504 Plan, or an IHCP for your child. The school system is required to respond to you and schedule a meeting within a short time. Your child’s physician can also help a great deal 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 will meet your child’s current and future needs requires patience, knowledge, and good communication skills. Take the time to learn about this now, rather than waiting until there’s a problem at school.


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 school staff. Be sure to document everything in writing, especially agreements that are made. Because CSID is a rare disorder, you will need to provide some written documentation about the disorder. Also be to sure to tell the school about your child, not just his 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 his/her 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 so important because it will set 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, and as a team player. It can be a fine line at times. One motto to remember is, “be assertive, but not aggressive.” Being aggressive is telling others what they have to do and this is seldom effective. Being assertive is telling others what we need. Sharing what we need and phrasing it politely will generally result in cooperation. Most teachers are eager to do what’s right for your child when asked nicely and within reason. Ask, discuss, negotiate, and problem-solve.


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 – 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 a parent/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 teacher that you do not expect him/her to assume this role. Tell the teacher he/she just needs to relay any medical information to you in a timely manner. Assure the teacher that you see him/her as the educational professional to your child and to the other children in the classroom. Assure him/her that your child’s special needs are manageable once they are learned, and will not be overwhelming. Be positive. You want to have a good relationship with your child’s teacher. Find out what you can do to support him/her. 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/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.