Resources for School Success

School can be overwhelming for anyone, but with a little extra planning, fears can be eased for children with special healthcare needs and genetic conditions. Check out some of these great resources and add your own!

• Attending School with a Genetic Condition: A Guide for Parents (PDF) This Guide provides information that may be helpful when writing a letter or when preparing to meet with your student’s teacher, school nurse, and physical education teacher or coach. In addition, this resource includes ideas for how your child can talk to classmates or peers about his or her genetic condition.

• Do's and Dont's for Teacher-Advocates - This article published by Newsline is a guide for teachers of children with special needs who wish to advocate effectively for their student without endangering their careers.

• Forms for School Nurses and Parents - The sample forms linked here provide guidelines for collecting data relevant to educational planning for students with epilepsy and can be adapted to meet individual and institutional needs.

• Guide to the Individualized Education Program - The purpose of this guidance is to assist educators, parents, and state and local educational agencies in implementing the requirements of Part B of the Individuals with Disabilities Education Act (IDEA) regarding Individualized Education Programs (IEPs) for children with disabilities, including preschool-aged children.

• IEP Goal Bank - In preparation for your child's IEP, check out this listing of sample goals.

• The IEP Team - Who's on the team? What is each member responsible for? What can I bring to the table? Find out about the various roles and why writing an effective individualized education plan is dependent on teamwork.

• [- https://primaryimmune.org/wp-content/uploads/2015/01/IDF-School-Guide-3rd-Edition-2015-FINAL.pdf Immune Deficiency Foundation School Guide: Information About Students with Primary Immunodeficiency Diseases (PDF)] - A very comprehensive guide that covers such topics as educational rights, special considerations, and sample forms in addition to information about the condition.

• Individuals with Disabilities Act Review - The Individuals with Disabilities Education Act is a complex federal law that affects your child directly. Take another look at the history, purpose, and components to be sure you understand your rights and responsibilities.

• The 411 on Disability Disclosure: A Workbook for Youth with Disabilities - This workbook is designed for youth and adults working with them to learn about disability disclosure. It helps young people make informed decisions about whether or not to disclose their disability and understand how the decision may impact their education, employment, and social lives. Based on the premise that disclosure is a very personal decision, the Workbook helps young people think about and practice disclosing their disability. It is available in PDF, Word document, and in audio as an MP3.