Accessing Services in the School
The school year is coming upon us quickly and we want to take this opportunity to acquaint (or remind) parents about several important information resources from the Ocular Immunology and Uveitis Foundation:
This is a basic "how to" for parents. When considering school supports for your child with uveitis, it is important to know some basic facts and steps. What is an entitlement? What is the schools obligation? What is the school required to provide under the law? What steps do you need to take? The material in this handout was presented by Dr. Sharon Ray as part of a workshop on school planning and advocacy for parents of kids with uveitis.
When a child has uveitis, it is important for teachers and parents to learn about the illness and about its potential effect on the child. This publication, a small booklet, was written by Dr. Foster and contributors at the suggestion of parents on this forum and has proven to be a very valuable resource for teachers, parents, and students.
The booklet is already in it's second printing. A copy can be ordered through the link above, or read it online.
Have a Question: Advocacy Online
Sharon Ray, a specialist in school advocacy, and author of Accessing Services in the School, is a regular contributor to this forum. You can post a question. Just open a "New Topic", right here, in the parent section, and start the discussion.
This online exchange format has been used very successfully to address specific questions about a particular state, to sort out "next steps", and to get support and advice about getting your child's school on board.
Dr. Ray is a specialist in pediatic occupational therapy and on the faculty of Tufts University. She has many years of experience at the interface between schools and families, "knows" uveitis, and can help you understand barriers you may encounter. What an extraordinary resource.
HELP!!!!
Sharon,
My name is Carla, my son's name is Alex and has uveitis with a rare disease called tubulo interstitial nephritis and uveitis (TINU). When he became ill with this disease, he was unable to attend school for a whole trimester. I feel the school let us down in helping us, rather making life more difficult for us( while dealing with this devestating disease) they would not provide homebound support which was needed-of all things they requested that we homeschool Alex-(I was in shock).They wanted fail Alex for all classes that trimester-due to being absent.I had to fight to have them give him 0's so it would not affect his gpa.
This year he is a senior, they have a minimal iep on him with provisions for absense due to lots of doctors appointments. He is on the maximum dose of cellcept 3 grams. Yesterday he was diagnosed with shingles.(Probably due to the cellcepts immunosuppression.
Today I visited with the dean of students at the high school. I wanted them to have a heads up incase he would need to go homebound. The Dean told me that he could not go homebound unless he was special ed. He takes a class called work co-op and works at a movie theatre. The dean said that he will fail this class if he misses more than two weeks of work. His last trimester requires him to take a pass algebra,PE and English. Please help me I am so frustrated with this school system. We live in Texas. What is ironic is that pregnant girls qualify for homebound. I want my son to graduate so he can get on with his life and go to college. Should I contact the TEA? Please help.
Thanks,
Carla
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