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Help at school for children with urea cycle disorders

As a parent or caregiver of a child living with a urea cycle disorder (UCD), you want to do everything you can to help manage his or her disease, both at home and in the classroom. Here are several resources with tips and information to support your child at school, including:

  • A guide to an Individualized Education Program (IEP) or a 504 Plan—these are two free government programs that may offer your child extra academic support.

  • A worksheet for talking about UCDs at school to help your child practice what to say and do if tough situations come up at school.

    Download worksheet

  • A downloadable guide to caring for someone with a UCD to help others understand your child’s needs.

    Download guide

  • A sample email to help you request a meeting and a customizable presentation to teach school staff about UCDs.

  • A resource for substitute teachers to explain the basic do’s and don’ts of helping manage your child’s UCD at school.

Educating teachers and staff about urea cycle disorders

Teachers and other education professionals are an important part of your child’s school experience. They can also become a valuable part of his or her regular care team. Taking the time to educate teachers, staff, and administration about UCDs can make managing a UCD at school much easier for everyone. As a parent or caregiver, let them know what a UCD is, how it’s managed, and how to assist you and your child during an emergency. Here are some helpful tools.

You can use this sample email to educate teachers and staff or this customizable presentation.

Download sample email

The customizable presentation lets you provide a more complete and personalized picture of your child to the school. You can add photos of your child, list their favorite movies and books, add fun facts, and more to help you educate teachers and school staff about your child and his or her UCD. Fill in anything that appears in [BRACKETS], or delete it if it doesn’t apply to your child. If you do not have access to Microsoft PowerPoint®, download Apache Open Office™ for free here and then download the presentation.

A quick resource to educate new and substitute teachers

Here is a resource for your child’s substitute teacher, providing a summary of urea cycle disorders (UCDs). Also included are UCD tips covering diet, hydration, activity, emergency contact information, and more. Bring this in at the beginning of the school year to help educate the school staff. Ask your child’s teacher or the staff to keep a copy on file and share it with substitute teachers who may fill in when the regular teacher is away. 

There are two free government programs that may offer extra support for your child.

Maybe math is a struggle, reading levels aren’t quite where they should be, or socializing is hard. Children living with a urea cycle disorder (UCD) face many challenges, sometimes including learning.

These 2 free programs may be able to help: An Individualized Education Program (IEP) or a 504 Plan may be able to help your child get the extra support that he or she needs and deserves. See below for a chart summarizing features of these two free programs.

IEP vs 504 Plans

What’s the difference?

The main difference is that an IEP changes the curriculum, or what a student is learning. A 504 plan does not change the curriculum but changes how a student learns it. For example, an IEP might change what a student is learning by giving him or her a book on the same topic as the one being read by classmates but at a different reading level. A 504 plan would give the child the same book at the same reading level as his or her classmates but more time to read it.

IEP 504

What is it?

An IEP is an Individualized Education Program. It provides individualized special education for a child who has a certain disability or disabilities. The plan also provides any related support services needed to help a child fully benefit from his or her special education plan. An IEP can include both modifications and accommodations (these are the “related support services”)

A 504 plan describes the accommodations that will help a child who has certain physical or mental impairments to access learning and succeed in the classroom. A 504 plan includes accommodations only

What is the law?

The Individuals with Disabilities Education Act (often called IDEA) is a federal law that ensures a child receives special education and related services as long as he or she:

  • Has a qualifying disability

  • Attends an elementary or secondary school that gets financial support from the federal government

Section 504 of the Rehabilitation Act of 1973 is a federal law that protects people with disabilities from discrimination

Who is eligible?

To qualify for an IEP:

  • Your child must fit at least 1 of the 13 disability categories listed in the IDEA:

    • Specific learning disability (such as dyslexia, an auditory processing disorder, or a nonverbal learning disability)

    • Other health impairment (such as an attention issue like ADHD)

    • Autism spectrum disorder

    • Emotional disturbance (such as anxiety disorder, schizophrenia, bipolar disorder, obsessive-compulsive disorder, or depression)

    • Speech or language impairment

    • Visual impairment, including blindness

    • Deafness

    • Hearing impairment (hearing loss not covered by the definition of deafness)

    • Deaf-blindness

    • Orthopedic impairment

    • Intellectual disability

    • Traumatic brain injury

    • Multiple disabilities

    • Your child's disability must affect his or her educational performance and/ or ability to learn from the general curriculum

To qualify for a 504 plan:

  • Your child must have a physical or mental impairment that substantially limits 1 or more major life activities, such as learning

  • Your child's disability must interfere with his or her ability to learn in a general education classroom

Note: The definition of a disability for a 504 plan is broader than the definition for an IEP. A child who isn't eligible for an IEP may be eligible for a 504 plan

What is the process for getting my child on a plan?

You can start the IEP process for your child, or the school may suggest the possibility of an IEP.

  • The first step is an evaluation to confirm whether your child is eligible for special education under an IEP. Your child's school needs your written consent to do this evaluation. The school can do the evaluation, but you can also ask the district to pay for a private evaluation. It is not required to pay for an outside evaluator, but you always have the option of paying yourself

  • When the school gets the results of the evaluation, school staff will have an eligibility meeting to decide if your child qualifies for an IEP. You'll be at this meeting as part of the IEP team

  • If the team decides your child is eligible, you'll work together to start creating your child's IEP. If your child doesn't qualify for an IEP, he or she may still be eligible for accommodations under a 504 plan

You can start the 504 plan process for your child, or the school may suggest the possibility of a 504 plan, especially if your child doesn't qualify for an IEP. The 504 plan process varies depending on your school district.

  • You must request a 504 plan in writing and direct it to the school district's 504 plan coordinator

  • Your child doesn't need to have an educational evaluation to get a 504 plan, though you may opt to have one. Your child's school needs your written consent to do this evaluation. The school can do the evaluation, but you can also ask the district to pay for a private evaluation. It is not required to pay for an outside evaluator, but you always have the option of paying yourself

  • School staff will evaluate your child to decide if he or she qualifies for a 504 plan and what supports or accommodations he or she might need. This evaluation will include information from several sources, one of which might be records of a medical diagnosis, like a UCD. As part of the evaluation, the staff will want to talk to and observe your child. They will also want to interview you, your child's teacher, and others who may have worked with your child

  • When the evaluation is finished, school staff will likely meet with you to decide if your child qualifies for a 504 plan. You can also request this meeting if the school doesn't schedule it

Who creates a plan for my child?

An IEP is created by a designated team. Under the IDEA law, this team must include:

  • A parent or legal guardian

  • At least one of your child’s general education teachers

  • At least one special education teacher

  • A school psychologist

  • A special education services representative from the school district

You are also allowed to bring a parent advocate for help and support. The school doesn’t have to provide this advocate for you, but school staff might be able to connect you with one. You may also bring someone, like a friend or family member, to take notes or offer support.

The 504 plan is created by a team of school administrators and may be different from child to child depending on the school staff. The requirements for members of this team are people who:

  • Are familiar with your child

  • Understand the results of your child's evaluation

  • Understand the options for accommodations

A 504 plan team might include:

  • A parent or legal guardian

  • A general education teacher

  • A special education teacher

  • The school principal

What is included in the written plan?

The IEP sets learning goals for your child and outlines the services he or she will get from the school.The following elements should be included in a written IEP:

Personal information about your child (name, age,etc)

  • How he or she is currently doing in school (also called the Present Level of Education Performance)

  • Annual goals for your child and how school staff will track his or her progress

  • Progress reporting

  • Any modifications or accommodations (also called "services" under an IEP)

  • How the services will be delivered

  • How your child will participate in classes, tests, and school activities

  • Your consent; as a parent, you must give consent in writing before the school can start providing the services outlined in your child’s IEP

Schools usually develop written 504 plans, though they aren't required to have the plan in writing. There are no requirements under the law about what a 504 plan should include.

Some things you may want to request in your child's 504 plan are:

  • Personal information about your child (name, age,etc)

  • 504 plan team members

  • The specific accommodations he or she will receive and how they will be implemented

  • Who will be responsible for making sure the plan is followed

  • Teacher support

  • Date approved

What are the requirements for reviewing the plan?

Your child's IEP must be reviewed once a year by the IEP team. Your child must be reevaluated every 3 years to determine if the modifications and services in his or her IEP are still needed

If the school wants to make a change to your child's IEP, school staff must notify you in writing before making the change. You should also be notified about any IEP meetings and/or evaluations

The rules for reviewing a 504 plan vary by state. It is usually reviewed yearly. Your child is usually reevaluated every 3 years, or sooner if needed, to decide if the accommodations in his or her 504 plan are still needed

If the school wants to reevaluate your child or make a significant change to his or her 504 plan, it must notify you. This is usually (but doesn't have to be) in writing

What is the cost?

Students receive these services at no cost to their families. States receive extra money from the federal government for eligible students

Students receive these services at no cost to their families. States don't receive extra money, but schools can be penalized by the federal government for not helping eligible students

Can my child have both an IEP and a 504 plan? Do I get to choose?

No. If a student qualifies for an IEP, that is the plan he or she must use. Neither the school nor the parent can choose a 504 plan instead. However, any accommodations that would be included in a 504 plan can also be included as services in an IEP.

You know your child better than anyone else. If you aren’t happy with the goals and support outlined in the IEP or 504 Plan, you can request a mediation session or a hearing. In the end, ensuring your child gets the best help possible is the most important goal.

For additional information about IEPs, go to the US Department of Education website, which explains everything from writing an IEP to showing a sample IEP form and offers a downloadable brochure to read and save.

The Department of Education also offers helpful information about 504 Plans here and how to contact your local state government for assistance here


Use our sample to create your own personalized email to inform teachers about your child’s UCD

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