School age children with a rare disease should have an I.H.P. in place, with an I.E.P and a 504 plan in effect at their school. Confusing? Finally, some plain talk about educational jargon and programs – complete with helpful links and resources! Sift through the terminology and learn effective ways to help children challenged by a rare disease diagnosis – allowing them to maximize their school experience. Find out how to initiate ACTION, and become part of your child’s Pupil Evaluation Team.
Are you a rare disease patient enrolled college or involved with learning opportunities provided by your workplace? Adults with a chronic illness often deal with learning disabilities that can affect workplace issues, so read on to discover education issues and check out how the links here can provide a starting point to explore complexities that affect adult rare disease patients.
Special version of the above, written in more general terms for the any student challenged by a rare disease diagnosis.
An IHP or Individual Health Plan is an extremely useful tool for individuals with special health issues, allowing a formal and organized format for school personnel to help maintain a healthy learning environment.
For an overview of aHUS and Education, click HERE .
Here are guidelines, suggestions, and a sample IHP (Individual Health Plan) for an elementary school age child diagnosed with a rare disease. To better illustrate the type of wording found in an actual IHP, this sample format represents what might be in an IHP for the rare atypical hemolytic uremic syndrome or aHUS. Helpful tips for constructing an IHP for any student with a rare disease diagnosis are marked in green.
Click HERE to Learn More- See a Sample IHP, with tips on how to CREATE YOUR OWN IHP draft to collaborate with school officials
Atypical HUS presents very differently in patients with this rare disease. Initially your main consideration in a student’s academic success is communication between home and school regarding the needs of aHUS patients who are attending classes at any grade level within a public or private school setting.
Communicating information about atypical HUS as a disease, explaining the student’s health status and needs, and meeting as a P.E.T. to determine needed accommodations can make a huge difference in not only optimizing success but also in providing a safe and comfortable school experience for children with atypical HUS.
We've compiled a list of resources for school nurses to share with staff and with parents, in addition to basic information about this rare disease.
Overview of Education and the Rare Disease Patients and a Sample Individualized Health Plan by Linda Burke, M.S.Ed.