Cystic Fibrosis in the Classroom

Cystic Fibrosis is categorized under the handicapping condition of "Other Health Impaired." According to the Cystic Fibrosis Foundation, an estimated 70,000 children worldwide have this disorder. It is a serious hereditary disease that affects the respiratory and the digestive systems. If both parents are a carrier of Cystic Fibrosis, then a child is at risk of inheriting this disease.

Cystic Fibrosis affects the sweat glands and the mucus. As a child gets older, he may experience bronchitis, a collapsed lung, or pneumonia. Thanks to the advancement of medical treatment for Cystic Fibrosis, most of these individuals are able to live well into adulthood.

Because of the serious health concerns, a child with Cystic Fibrosis needs to be identified by the Committee on Special Education (CSE) and an Individualized Educational Plan (IEP) needs to be devised. Treatment of Cystic Fibrosis is long-term and regular checkups are crucial. Thus, a child with this disease is apt to miss a fair amount of school for doctor appointments. Although there may be additional areas of concern that need to be addressed, the IEP must address the physical needs of the child and how education will be provided if the child isn't able to attend school regularly.

Some common practices to help meet the needs of a student with Cystic Fibrosis include:

- Provision of a 1:1 aide. The aide can be trained to look for symptoms and to know when to take the child to the school nurse. Symptoms may include coughing, shortness of breath and digestive issues.

- Scheduled times for treatments. If necessary, the child may need to be seen by the school nurse throughout the day to receive exercises/treatments to loosen and promote mucus drainage.

- Modified worksheets and notes. If the child is having a challenging time physically and is fatigued, then work expectations should be modified. It might mean having the child complete every other problem or receive copies of notes taken by another student.

- Carry a water bottle. The child may need to frequently drink water to keep his throat clear and will need to have easy access to water.

- Adaptive Physical Education (APE). The extent the child can participate in the general physical education class is largely dependent on how he/she is feeling physically. The APE instructor can modify curriculum, revise class rubrics, reduce the activity level, etc.

- Home instruction. An alternate plan needs to be in place to provide home instruction when the child is too ill to attend a full day of class, but is able to handle one or two hours of instruction.

Because the child is likely to miss a lot of school, he/she can easily feel disconnected from classmates. It might be beneficial to ask the child's parent or doctor to talk about Cystic Fibrosis with the class. When the child needs to be hospitalized or put on home instruction, find ways to help him/her stay connected--have students make cards, make a class DVD, provide copies of lesson plans, or visit the child.

There are varying degrees of severity in Cystic Fibrosis children. Some children may need a lot of support, while others will need minimum support. Yet, symptoms can fluctuate from day to day, and faculty/staff need to be educated on how to recognize symptoms and the protocol for assisting the student.

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Cystic Fibrosis in the Classroom

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