|5 easy accommodations for a student with cystinosis|
As a student with cystinosis, an advocate at the school can be a big help. A guidance counselor, nurse, or teacher are all good options for this role. Identify this person at the start of the school year. Your advocate should be someone physically present at school who can answer questions, handle problems, and offer you guidance.3
To make the most of your relationship with a student advocate, it helps to:
- Create a schedule that allows you and your advocate to meet as often as you need, maybe even once a week.
- Write down any concerns or issues ahead of your meeting so you know what you want to talk about. These topics might be academic, social, or medical.
- Educate your student advocate about cystinosis during your first meeting, and offer regular updates on your health, but discuss only the details you’re comfortable sharing.
Individualized Education Programs and 504 plans
An individualized education program (or IEP) is a written document that guides the education of a student with a disability. Because each IEP is designed for a single student, it is truly an individualized plan.10 504 plan refers to section 504 of the Rehabilitation Act. It is a civil rights law that ensures that a child with a disability has equal access to education.11
It is not uncommon for a student with cystinosis to have both an IEP and a 504 plan in place. It can be confusing to have separate plans for one student, and it’s not necessary. The IEP can be more comprehensive, more detailed, and more prescriptive.12 Whether you have an IEP, a 504 plan, or both, these plans should be simple and easy to follow. They must include the important information that will enable school staff to implement the necessary accommodations to meet your individual needs. Some modifications and accommodations that could be appropriate for you include:3
- An emergency medical plan involving the family, school, and doctors
- Modified physical education requirements
- Extra time for homework, tests, and other assignments
- Being allowed to demonstrate mastery of a subject in different ways besides completing all assignments
- A quiet place to rest during the day
- An extra set of clothes to be left with the school nurse
The U.S. Department of Education provides a guide to the Individualized Education Program, including what to include in an IEP.
Many IEP templates are available online. The above link to the U.S. Department of Education gives a comprehensive list of what should be included. Before getting started yourself, it’s a good idea to speak with an administrator at your school who may have a template he or she likes to use.
- Brodin-Sartorius A, Tète M-J, Niaudet P, et al. Cysteamine therapy delays the progression of nephropathic cystinosis in late adolescents and adults. Kidney Int. 2012;81:179-189.
- Levtchenko EN, van Dael CM, de Graaf-Hess AC, et al. Strict cysteamine dose regimen is required to prevent nocturnal cystine accumulation in cystinosis. Pediatr Nephrol. 2006;21:110-113.
- Cystinosis Transitioning Guide, Cystinosis Research Network website. Available at https://cystinosis.org/research/article-library/transition. Accessed August 20, 2015.
- Goodyer, Paul. The history of cystinosis: Lessons for clinical management. Int J Nephrol. 2011:1-7. Available at http://www.hindawi.com/journals/ijn/2011/929456/. Accessed August 20, 2015.
- National Institutes of Health, MedlinePlus. “Photophobia.” Available at http://www.nlm.nih.gov/medlineplus/ency/article/003041.htm. Accessed July 30, 2015.
- Nesterova G, Gahl WA. Cystinosis: The evolution of a treatable disease. Pediatr Nephrol. 2013;28:51-59.
- Langman CB, Greenbaum LA, Sarwal M, et al. A randomized controlled crossover trial with delayed-release cysteamine bitartrate in nephropathic cystinosis: Effectiveness on white blood cell cystine 1120. Clin J Am Soc Nephrol. 2012;7(7):1112-1120.
- Gahl WA, Thoene JG, Schneider JA. Cystinosis. N Engl J Med. 2002;347(2):111-121.
- Cystinosis Parent Handbook, Cystinosis Research Network website. Available at https://cystinosis.org/images/research/article-library/overview/CRN_Parent.pdf. Accessed August 20, 2015.
- US Department of Education. A guide to the individualized education program. Available at http://www2.ed.gov/parents/needs/speced/iepguide/index.html. Accessed August 21, 2015.
- Wrightslaw. Discrimination: Section 504 and ADA. Available at http://www.wrightslaw.com/info/sec504.index.htm. Accessed August 21, 2015.
- Wrightslaw. Does a child need an IEP and a 504 plan? Available at http://www.wrightslaw.com/blog/?p=122. Accessed August 21, 2015.