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Going to School with Cystic Fibrosis

What You Need to Know


Updated July 26, 2009

When children with CF reach school age, some things need to be set up to make sure they have the educational experience they deserve while maintaining the physical care that they need. Treatment routines must be followed throughout the day, even when the child is at school. Follow these steps to be ready to send your child off safely.

Public or Private?

The first thing you will have to do is decide if you want your child to attend a public or private school. Start researching schools six months to a year before you will be enrolling your child so you have plenty of time to explore your options.

When deciding between public and private, it is important to know that public schools are required by law to accommodate your child’s special needs but private schools are not unless they receive federal funding. If you are considering a private school, the first question you should ask them is if they are willing to make the necessary accommodations. If they are not, move on. The Americans with Disabilities Act does require that public places make accommodations for disabled people, but private institutions are not required to admit students with disabilities.

Know Your Child’s Rights

Your child’s rights to accommodations at public school are protected by the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973. The IDEA requires schools to offer children with special needs an Individualized Education Program Plan (IEP] and the Rehabilitation Act requires schools to offer what is known as a 504 Plan. Both of these plans are written agreements between parents and schools that outline how medicines, absences, treatments, and other things that may interfere with learning will be managed.

Be Your Child’s Biggest Advocate

Before the school year begins, contact the school board or your private school administrators to develop your child’s IEP, 504 plan, or other accommodation agreement. You know your child and his or her needs better than anybody. Make sure that all of the needs are accounted for in the plan. Contact the school to schedule a meeting to revise the plan if your child’s needs change throughout the year.

Protecting Students with Disabilites.(2005). United States Department of Education. Office of Civil Rights.

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