Support for your child’s education needs through the transplant journey

Posted July 31st, 2012 by admin and filed in Patient Stories

If you are the parent of a young transplant recipient, you know there are added challenges for your child to succeed in school and keep up with their peers. But did you know that your child has rights to receive extra support and resources that fit how he or she is able to learn? A mother and an expert in the field tell you how.

Hospital teacher Sarah Steinke, M.Ed., M.A., at Cincinnati Children’s Hospital Medical Center answers questions that she has received from parents of pediatric transplant patients about Individualized Education Programs (IEP) and 504 plans.

What is an Individualized Education Program (IEP) and how can it help my child?

Because of your child’s transplant, they meet the definition of having a medical disability that affects their ability to attend school and complete schoolwork like their peers. This makes your child eligible for an IEP. An IEP is an individualized education plan based on your child’s strengths and needs. A team including you and your child’s teacher will make annual educational goals for your child and plans for measuring these goals. Your child’s school will also need a written plan in the form of an IEP that states his/her needs for a different learning environment, such as a hospital school or homebound instruction – where teachers or tutors come to the child’s home.

What is a 504 plan and how can it help my child?
A 504 plan is based on civil rights law (Section 504 of the Rehabilitation Act of 1973) that provides an opportunity for equal access to education. It protects against discrimination because of a mental or physical disability and allows for reasonable accommodations. Children undergoing a bone marrow transplant will miss a significant amount of school that will make it difficult to keep up with school work.  Examples of accommodations a 504 plan can provide to your child include extra time on tests and assignments, a copy of notes, preferential seating, an extra set of textbooks at home and extra bathroom breaks. The process for eligibility does not require a formal request, but you need to work with the child’s school to make their needs known. 

An IEP and 504 plan sound similar. How do I decide which is right for my child?
If small adjustments will provide enough support for your child to succeed in school, a 504 plan is a good option.  For example, if your child is able to do well with extra time on tests, copies of notes from the teacher, an extra set of books at home to avoid carrying a heavy load, and any other accommodations his/her school will provide, then your child does not need an IEP. If your child has trouble keeping track of assignments or taking notes, gets overwhelmed often and his/her grades are suffering, then your child would benefit from an IEP. Private schools do not have to provide or follow IEPs or 504 plans unless they receive federal funding.  However, many private schools will meet the needs of your child by offering similar plans. In college, special accommodations are arranged through the disability services office.

If my child needs an IEP, what are the first steps?
A parent can request that their child be evaluated for special services at any time.  It is best to put this request in writing to a school administrator (you can also deliver it in person).   After you have made a formal request, the school will respond. Then, a school psychologist will make an assessment. After that, the IEP meeting takes place with you and the IEP team and the school will determine if your child is eligible for an IEP. 

Where can I go for help? 
Many hospitals have programs that can help with school communication and re-entry needs and are resources for parents and students needing either an IEP or 504 plan. 

Joe transplant recipientJoe’s story
Joan talks about her son Joe’s experience and how the extra academic support and resources of an IEP plan helped him succeed.

Following transplant, my son Joe had low energy and suffered from fatigue.  He could not focus for long periods of time and needed to build up his physical strength. Also, his immune system was compromised and he had to go into the BMT clinic frequently for doctor appointments.

Joe had homebound instruction during the second half of 9th grade and an IEP for 10th grade. For his IEP, Joe was provided longer times on tests, extended deadlines for completing assignments, and shortened homework assignments as mastery was shown. He could also listen to books on tape. He could leave class five minutes early so he didn’t get bumped in the hallway and so he had enough time to get to his locker and the next class.  Joe was able to do his physical education requirements through a home activity log since he wouldn’t be able to keep up in a regular gym class.  He also took an independent study class to meet a graduation requirement.

Joe graduated from high school on time and has since graduated from St. John’s University with a degree in Business Management in May 2012.  In June he landed his first full time position with a marketing company in the Twin Cities.

My advice is to ask the school about any special services that may be available. Be persistent and be frank about what your child is struggling with. The letter from our BMT doctor was more than a page long and it really communicated how long and difficult the recovery can be.  This gave credence to what we were telling them.

For additional resources, check out:
Be The Match

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