You may have a child who has an enteral feeding tube and is starting kindergarten for a few hours every day. Or maybe your teen just got a new feeding tube and is going back to school with it for the first time. Wherever your child falls in the spectrum of school-age tubies, your feelings may be the same: anxiety and concern about how safe and adjusted your child will be. Letting go of some of the control over your child’s tube feeding isn’t easy and we applaud you for taking those first steps.
There are several things you can do to smooth the transition. If your child is going to school with an enteral feeding tube, you’ll want to have a plan to make sure the tube is handled in the right way.1 Here are the three main plans you’ll want to keep in mind.
- Individualized Education Plan (IEP).2 Parents use this plan most often used for children who need special education services or an adapted curriculum. It may also apply to a child with very extensive medical needs but no developmental or learning issues. But that medical condition must severely impact the child’s ability to learn. Meaning, the child’s strength, vitality or alertness must be significantly affected. For instance, if your child has a health condition that could cause many missed days of school or require reduced assignments, there’s a category in the IEP titled “Other Health Impaired.” It allows children with medical conditions to have an IEP.
IEPs cover a lot of ground. The plan helps your child adapt and accommodate his or her specific needs to get the most out of the school’s curriculum. It includes such things as how to handle feedings and whether a nurse or aide services are needed. From a legal standpoint, IEPs offer the greatest protection and are the easiest type of plan to enforce.
When you’re writing an IEP for your child, it’s best to add anything that could affect your child at school — even if it seems like a small thing. For instance, your child may be allergic to certain foods. It’s better not to rely on simply telling the teaching staff, because they may forget. By adding specifics to the IEP about food allergies and tube feeds, it will be a reminder for the staff and a legally binding document if they don’t follow your requests.
- 504 Plan.3 This is the ideal plan for children who need some assistance or adaptations to attend school, but otherwise have fairly straightforward healthcare needs that don’t require special education. You’ll use this plan to outline how to provide special care, such as feedings and the need for a nurse or an aide, during your child’s school day. The plan can follow the student all the way to college and the workplace, with the proper updates made for age and changing needs.
The 504 Plan is legally binding, but keep in mind that the language in the laws related to this plan isn’t as specific as it is for an IEP, so you’ll need to stay on top of the details. Plus, instead of the normal judicial or court systems, the Office of Civil Rights handles any complaints based on violations of the 504 Plan.
- Individual Health Plan (IHP).4 An IHP is developed when the parent, child and school work together. Since this type of plan doesn’t have any legally binding protections, you should avoid a stand-alone IHP unless your child’s needs are very minor. Check with your school district though — some of them have the IHP as part of either an IEP or 504 plan, which can be helpful for the school nurse.
The IHP is also a good way to give your child’s school details about the care your child needs. Just remember, since the IHP isn’t a legal document, the school doesn’t have to abide by it, so consider also having an IEP or 504 plan in place as well.
Checking the differences between IEP, 504 and IHP plans
The differences may seem subtle, but they can have a major impact on the care your child receives at school. This chart gives a general overview of what you can expect each plan to provide.
Planning good things for your child’s school experience
You want the best for your child’s nutritional — and educational — needs. By working closely with the school staff and your child’s doctor, you’ll rest easier knowing there’s a plan in place. With great communication and preparation, you’ll help set your child up (and those supporting him or her at school), for greater success.
As your child heads to school, be prepared by reviewing troubleshooting videos (that may also be helpful to send to school nurses and staff).
1. ”School-based Accommodations & Supports.” Feeding Matters. September 5, 2018. https://www.feedingmatters.org/school-based-accommodations-supports-2/
2. Newsletters: IHPs, 504 Plans, and IEPs: What’s the Difference?” The Oley Foundation. https://oley.org/page/IHP_IEP_Difference?&hhsearchterms=%22504+and+plans%22