If your child is attending school with any kind of feeding tube in place — whether the tube is being used or not — he needs a plan in place to make sure the feeding tube is handled properly. This plan can be handled in one of three ways:
IEP: An IEP is an Individualized Education Plan. It is typically used for children who need any type of special education services or an adapted curriculum. If a child has very extensive medical needs but no developmental or cognitive issues, an IEP may still be used if the medical condition severely impacts the ability to learn. The category of “Other Health Impaired” allows children with medical conditions to have an IEP. IEPs are incredibly comprehensive, and will include all the adaptations and accommodations a child requires to access the curriculum, including how feedings will be handled, and if nursing or aide services are required. They have the greatest legal protections, and are the easiest type of plan to enforce legally.
504 Plan: A 504 plan is perfect for children who have relatively straightforward medical needs and no special education needs, but require some assistance or adaptations to attend school. These plans outline how special care, such as feedings, will be provided to a child during the school day. A 504 Plan can include the need for an aide or a nurse. 504 Plans are legally binding, but the language in the relevant laws is not as specific as it is for an IEP. In addition, complaints are handled by the Office of Civil Rights and not due process or the court system.
IHPs: An IHP is an Individual Health Plan. These are developed between a parent/child and the school, with no legally binding protections. Unless your child’s needs are extremely minimal, you should avoid a stand-alone IHP. In some school districts, however, the IHP is a component of either an IEP or 504 Plan. The IHP is helpful for the school nurse and is a good opportunity to give the school the details of how to care for your child. However, since the IHP is not a legal document that the school has to abide by, make sure you also have an IEP or 504 plan that encompasses the IHP.
If your child’s physician states your child can only attend school with a nurse or aide to handle the feeding tube, the school MUST provide this related service as part of the IEP or 504 Plan. Whether a child receives care from a nurse or aide may depend on the laws in your state. Some states only allow nurses to handle feeding tubes and give medications, while other states permit an aide to handle these tasks, if he or she has been trained to do so. In rare cases, a teacher may also provide feedings or medications.
A feeding tube should not prevent your child from attending school. If, however, your child has additional needs and requires homebound education, this is an option. Schools must provide a teacher in the home for a child who is unable to attend school. The laws on homebound education are unfortunately quite vague and vary considerably from state to state. Most states will provide homebound services for any child who will be unable to attend school for a period of time, or intermittently if a child misses school frequently. For more information, see Homebound Instruction for Children who are Medically Complex from Complex Child.
What should be in the IEP/504 Plan?
What to do if the tube comes out
Who will handle feedings
How and when feedings will be given
Who will give feedings
Where feedings will be given
Who will be in charge of the tube on the bus
How medications will be given
How supplies and equipment will be stored
Who will troubleshoot pump problems
Accommodations for gym and recess
How oral feedings will be administered
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