IEP FOR RETT SYNDROME STUDENTS
Becoming knowledgeable with the IEP and how to navigate the process is extremely important when you have a child with Rett Syndrome. Below you will find some of our resources and information thanks to our sister site; rettgirl.org to help you with your child’s IEP.
WHAT IS AN IEP
A federal law called the Individuals with Disabilities Education Act (IDEA) requires that public schools create an IEP for every child receiving special education services. The IEP is meant to address each child’s unique learning issues and include specific educational goals. The IEP is a legally binding document. The school must provide everything it promises in the IEP.
HERE’S A QUICK LOOK AT WHAT AN IEP MUST INCLUDE, BY LAW:
- A statement of your child’s present level of performance (PLOP)—this is how your child is doing in school now
- Your child’s annual educational goals
- Special education supports and services that the school will provide to help your child reach goals
- Modifications and accommodations the school will provide to help your child make progress
- Accommodations your child will be allowed when taking standardized tests
- How and when the school will measure your child’s progress toward annual goals
- Transition planning that prepares teens for life after high school
IEP’s Are Designed To Meet Student’s Unique Needs. That Means That Every IEP Will Look Different. But By Law, All IEP’s Must Contain The Following Elements
- Your child’s present levels of educational performance (PLOP): This is a thorough description of your child’s current abilities, skills, weaknesses and strengths. It’s the part of the IEP that explains how your child’s learning issues affect his/her ability to learn the general education curriculum.
- PLOP (also sometimes called PLP or PLAAFP) includes details on how your child handles academic subjects and every day or “functional” activities like socializing. PLOP should be based on teacher observations and objective data like test results. It’s important that PLOP is not simply copied “as is” from one year’s IEP to the next. Each year your child matures and masters skills. And each year the work becomes more challenging. So his/her performance and needs will change.
- The results of your child’s evaluations and tests: This should include district-wide and state assessments.
- Special education and related services to be provided: The IEP spells out what kinds of support and services your child will receive. If your child is going to have speech therapy, for instance, it will say how many minutes a week he/she will receive this therapy.
- Accommodations and modifications: These help your child learn the general education curriculum. Accommodations are changes in how a child shows what he/she has learned. They can help your child work around his/her learning issues. For example, he/she may be given extra time on tests.
- Modifications are changes in what is taught to or expected of a student. Some IEP’s have what’s called “modified promotional criteria.” This defines the percentage of grade-level expectations a child must meet to move on to the next grade.
- Supplementary aids and services: These are supports to help a child learn in the general education classroom. They might include a one-on-one aide, highlighted classroom notes, equipment or assistive technology such as software.
- Annual educational goals: These should be realistic, achievable and measurable. The IEP lists the academic and functional skills that the IEP team thinks your child can achieve by the end of the year. Annual educational goals should help your child participate in the general education classroom.
- If your child has multiple or severe disabilities, the law requires that the IEP list short-term goals. These are also called objectives or benchmarks.
- A description of how your child’s progress will be measured and reported to you. By law, the IEP must explain how the school will track your child’s progress toward goals. And it must describe how the school will share those results with you.
- For instance, one goal might be that your child be able to read at a third-grade level. The IEP will specify how that will be tracked—informal and formal assessments, for instance—and how often those results will reported to you. If these interim reports show that your child’s progress has stalled, you and the IEP team may discuss new interventions.
- An explanation of how much your child will participate in general education classes and extracurricular activities: Participation at the fullest level possible is required by law. This is called the least restrictive environment.
- The date the IEP will go into effect: Many states have formal timelines for this.
DEPENDING ON YOUR CHILD’S AGE AND SITUATION, HER IEP MIGHT ALSO INCLUDE:
- A transition plan- This kicks in when your child turns 16. Transition planning includes services and support to help a student graduate from high school and achieve post-high school goals.
- Extended school year services- Some students receive special education services outside of the regular school year, such as during the summer or, less commonly, during extended breaks like winter break.
The first thing you need to know about an IEP is what one looks like: what are some goals, what do other students with Rett have written into their IEP’s and what is really important to include? We have a “bank” of IEP’s thanks to our sister site Rettgirl.org that are organized by grade level. Check out our
IEP examples + Goals and objectives Bank
- A great book to read and pass along to your Rett Girls team is “Pathways to Learning in Rett Syndrome” which offers accessible advice on the special education needs of girls with Rett Syndrome and is beneficial for both parents and those working with Rett Girls.
- “Including Students with Severe Disabilities in Schools” is also a good book to reference when trying to push for inclusion with your Rett student.
- Wrights Law has some amazing books to educate yourself on the ins and outs of Special Education Law, they also have a great website with additional resources and a list of dates and locations for their training programs.
- For some quick and easy tips you can use and implement right now check out this great article from the Friendship Circle Blog 9 Steps to write an effective IEP for your child.
Communication is one of the biggest issues for students with Rett Syndrome. They need to have a way to communicate, they have so much to say and need a way to express themselves. We encourage you to push your school to allow your Rett Syndrome student to utilize an AAC (Augmentative and Alternative Communication) device or system. Apraxia makes it very difficult for these girls to be consistent which can some times be mistaken as them not understanding. A couple great resources to use and pass on are:
- MULTI-MODAL COMMUNICATION STRATEGIES FOR CHILDREN WHO HAVE RETT SYNDROME – Linda J. Burkhart
- THIS LETTER FROM RJ COOPER ABOUT GIRLS WITH RETT SYNDROME.
- WRITING IEP GOALS AND OBJECTIVES FOR AUTHENTIC COMMUNICATION – FOR CHILDREN WITH COMPLEX COMMUNICATION NEEDS
– Linda J. BurkhartD
Rett Syndrome individuals are very social so don’t forget to include social goals in their IEP. A great way to help their classmates learn about their abilities and understand them a little better is to send a letter home to the parents in the class. This can help answer lots of questions and oer an introduction. We have a sample letter drafted.
Girl Power 2 Cure, GP2C founder, Ingrid Harding, shares these helpful documents for introducing your daughter to a new school:
- BACK TO SCHOOL LETTER
–Kelly Butler, Family Coordinator for GP2C
- DAILY COMMUNICATION LOG
- SCHOOL GUIDE TO COMMUNICATE YOUR DAUGHTER’S NEEDS IN THE CLASSROOM