Going to school
Parents are the advocates for CF children in the classroom. Teachers are required in today’s world to accommodate children with a wide variety health and academic needs utilizing more resources at a time when classrooms are crowded, aides are scarce, and the school nurse serves many schools. It is important for parents to understand some of these limitations. Communication is the single most important tool parents and teachers share. There should be discussion with parents, teachers, school nurse, and other appropriate faculty about what accommodations or modifications may be necessary prior to the child starting school. It should also be discussed who should be informed about the child’s condition. Some patients and parents are open about their disease while others prefer total privacy. As with any school issue, confidentiality is important. Understanding a child’s rights, building communication with teachers, and anticipating and outlining any modifications that might be necessary are all factors to a child’s success in managing class work and feeling comfortable in the classroom.
CF is a genetic disease affecting approximately 30,000 children and adults in the United States. People with cystic fibrosis (CF) may not appear to be severely ill. CF is a chronic disease and is characterized by a defective gene, which causes the formation of abnormally thick, tenacious mucus. The presence of this mucus leads to severe respiratory and gastrointestinal complications. CF does not effect one’s intelligence or ability to learn. CF is not contagious and affects each person differently. For instance, one student with CF may be well enough to attend school either full or part time while another student is limited by the severity of their disease to attend school regularly. Each student with CF should be assessed on an individual basis for physical and emotional health.
Students with CF may have the following symptoms: Persistent wheeze or cough, recurrent respiratory infections/pneumonia, excessive appetite but poor weight gain due to difficulty in digesting food, and small growth stature. People with CF follow a daily treatment regimen to control their disease. Respiratory treatments that help clear the abnormal secretions in the lungs include chest physical therapy (CPT). CPT is usually performed 2-3 times a day routinely. Once before school, after school, and before bed. Some children may benefit from having their CPT done during school to help breathe more easily. Students with CF will also inhale a variety of medicines each day. These may also be needed during school hours. To defend their lungs and prevent harmful mucus buildup, students with CF will cough frequently. This should not be discouraged, as any attempt to suppress the coughing could be health risk. Pointing out this condition may also be embarrassing for the student. If you accept the coughing, other members of the class will too. A student with CF may need to keep tissues at their desk to cough or clear their throat into. They also may need additional water fountain privileges. Remember CF is not contagious.
The gastrointestinal complications of CF occur in digestion and malabsorption of the fats, proteins, and carbohydrates. Students with CF will require special pancreatic enzyme supplements to aid digestion, a special diet with increased calories and protein, and vitamin supplements. Pancreatic enzymes are taken prior to meals and snacks. These enzymes help the body absorb nutrients from food and reduce the number and bulk of stools, the amount of gas, abdominal pain, and distension. These medications are not habit forming or mood altering. Enzymes are a naturally occurring product derived from an animal source. Most children have been taking their enzymes since infancy and can take them on their own. There is no need to lock these medications in a desk or store them in an office. Students can carry their enzymes in their lunch box and take them with their meals and snacks. Parents can be responsible for the number of pills and for a proper storage container. Some students may feel embarrassed about taking pills in front of their classmates. Some may hide, forget, or throw away their enzymes. If a student neglects to take this medicine, they will experience abdominal pain and need to go to the bathroom more than usual. If this is a problem, the student may need supervision while taking medication. Students with CF need frequent restroom privileges, as flatulence can be odorous and embarrassing. They may also need additional snacks or dietary supplements during the day for weight maintenance. As with the coughing, the less attention drawn to the students diet and pill taking, the more comfortable the student will feel.
Teachers can play a role in assessing if a child is falling behind academically and may be exhibiting more health problems such as fatigue or workload seems too difficult. This may be a sign of worsening in the child’s health. Ten years ago the life expectancy of a person with CF was an average of 18 years. Advances in research and treatment have helped extend median survival to greater than 33 years. As a teacher, you have an important role in encouraging a child with CF to pursue their academic goals and prepare for adulthood as we hope the survival age will continue to increase.
Physical activity helps in clearing mucus from the lungs. Include a student with CF in all games and activities in which they are able to participate. Exercise is not only healthy for maintaining strength, endurance, and mobility, it promotes a sense of wellness and being part of the group. It is important to remember the extent of a CF student’s participation may be limited by their tolerance level depending on disease severity. The child with CF also has reduced tolerance to heat and loses an abnormally high amount of salt through their sweat. You even see salt crystals on their faces after playing or P.E. This puts them at risk for dehydration, electrolyte imbalance, and even heat exhaustion. Students with CF should be allowed to carry water or sports drinks, and eat salty snacks during hot weather.
Students with CF often miss school for frequent doctor’s appointments, short periods due to stomach ache, or fatigue. When necessary, the doctor will admit the child to the hospital for a week or two in order to control a lung infection with IV antibiotics. Tutorial support must be instituted in a timely manner for the homebound or hospitalized child to prevent the student from falling behind. It may take the student with CF longer to complete assignments due to fatigue and home health-care regimens. It is important for the school and parents to work together.
What to tell your peers
At some point, everyone with CF has to decide when or if to tell someone they have CF. Some people worry they will be treated differently or that people won’t want to be their friend. Teachers should discuss this issue with the family as some parents do not want the child’s condition known, and this should be respected. Teacher’s may also be mindful of what exactly the child knows about their illness as some parents may not have told the child certain details such as infertility or a shortened life expectancy. Most CF physicians, social workers, and psychologist suggest being open and matter-of-fact about CF. This doesn’t mean a child won’t occasionally face an inconsiderate person who might say something hurtful, but it’s a lot easier to go about life without trying to carry around secrets. After all, close friends will care and want to know. Friends knowing about CF will avoid awkward situations like when taking pills before eating, needing to go the restroom more frequently, or coughing spells.
(information provided by the CF Foundation’s Advocacy Manual: A Clinician’s Guide to the Legal Rights of People with Cystic Fibrosis)
There are two laws available to help parents advocate for children in the school setting. The first law is called the Individuals with Disabilities Education Act (IDEA). It states any public school must provide a free and appropriate education for students with disabilities. Some schools interpret this law to mean students with learning disabilities, and you may hear the term Individualized Education Plan (IEP) that makes accommodations for disabilities. But IDEA is also meant to protect children with Other Health Impairments (OHI). A child with CF will qualify for protection under this law as long as their health issues may impact their ability to learn. To qualify under this law, you must prove necessity. Teachers, school nurses, or administrators may not realize that this law encompasses OHI and unknowingly deny a child accommodations under IDEA If this happens, seek protection under section 504 of the Rehabilitation Act of 1973 which offers the same modifications. This law states that agency that receives federal funding must make accommodations for people with disabilities and cannot discriminate against a person for their disability. The advantage of this law is that it covers children in environments other than public schools. A private school that receives any federal funds must also accommodate for a child with disabilities. With either law, the parents, teachers, school nurse, and administrators meet to develop a plan that modifies a child’s current or future needs. Even in a child that is currently healthy, it is best to set up IEP under IDEA or 504 in case child becomes ill.
Sample modifications for elementary/secondary education might include:
- Child carries and takes own enzymes
- Child is moved away from other classmates who are sick
- Child is allowed to eat snack in class
- Child does not need to ask permission to go to the bathroom or to get a drink.
- Physical education (heat intolerance, physical limitations, etc)
- Homework sent home during absence
- Tutoring after 3 days absence
- Second set of textbooks for home
- School nurse will administer aerosolized medication if required
Section 504 also applies to colleges, graduate schools, and any other institute of higher education that receives federal funds, which is nearly every one. Under Section 504, institutes of higher learning cannot refuse to accept students based on their disabilities. The school must provide accommodations if the student is accepted. Most colleges will have an Office of Students with Disabilities that can assist in obtaining modifications or at least a person assigned to assisting students with disabilities. There is not requirement to register with Office of Students with Disabilities if student chooses not to request any modifications. Some schools do request that students complete health profile forms so that the school is aware of any potential health problems. You may want to assess a school’s attitude about providing modifications to students with disabilities prior to applying, some may wait until after they are accepted. A school may require that students take a certain number of hours to be eligible for financial aid or scholarships. Students may be able to request modification if they are unable to take required number of hours due their medical condition. There is no legal requirement that a college or university prepare a written plan of modifications provided to the student, however it is recommended that the student have the school formally acknowledge the accommodations in writing.
Sample modifications for higher education include:
- Provide specific type of living arrangement, such as private dorm room, a room with air conditioning, or private bathroom
- Decrease in required number of class hours per semester
- Modification in class attendance requirements
- Modify physical education requirements
- Generate a plan for when assignments, projects, or test due if student becomes ill
- Establish plan to have notes or audio recordings of class available to student if absent due to illness
- Provide student opportunity to complete course work after course ended if student misses part of semester due to illness
- Provide parking on campus
Scholarship and Financial Aid Opportunities
(information provided by the CF Foundation’s Advocacy Manual: A Clinician’s Guide to the Legal Rights of People with Cystic Fibrosis)
Cystic Fibrosis Scholarship Foundation
2814 Grant St.
Evanston, IL 60201
Applicants must be enrolled in a 2-4 year college, graduate program, or vocational school. Amounts of $1,000-2,000.00 are available and sent directly to educational institution. Awards are based on academic performance, leadership, and financial need. Applications are due in March.
CREON Family Scholarship Program
Solvay Pharmaceuticals, Inc.
901 Sawyer Road
Marietta, GA 30062
(800) 354-0026, x5898
Applicants may be in high school, college, or graduate school. Eligible students will receive $2,000.00 per year for up to 4 years. Awards based on academic performance, financial need, and leadership qualities, and ability to serve a s a role model to others with CF. Applications are due in June and awards made in August.
The George Washington University HEATH Resource Center
2121 K Street, NW, Suite 220
Washington, DC 20037
Contact HEATH for a publication titled “Creating Options: Financial Aid for Students with Disabilities”, which provides contact information and background about financial assistance opportunities.
Federal Student Aid Information Center
P.O. Box 84
Washington, DC 20044-0084