School & Work
It is important that the people responsible for your child in school including the principal, school nurse and teachers be well informed about. Good communication with educators can prevent potential problems and unnecessary stress. Request a meeting before school starts in the fall to ensure that everyone is on the same page. Publications like Cystic Fibrosis in the Classroom, Day-to-Day School and CF and the CF Foundation’s A Teacher’s Guide to CF website are good resources to distribute at your child’s school.
I’m worried that my child may be treated differently if the school knows he has CF.
This is a concern parents of before their child starts school. For the most part, children with CF attend school just like every other child. However, students with CF are entitled to modifications in school to ensure that they are successful. Parents should arrange to meet with school officials before the school starts to discuss any modifications that may be needed.
What if another child at school has CF?
If more than one child with CF is attending the same school parents should discuss the infection control plan with the school principal. Most schools can arrange for children with CF to not be in the same classrooms. The challenge is at lunch and in the nurses office. The rule of thumb is that children with CF should be separated by at least 6 feet.
Can my child carry his enzymes with him at school?
It depends. Each school system has its own rules about medications in public schools. If your child goes to a private school, there’s a good chance school administrators make decisions on a case-by-case basis. In public schools, enzymes are considered medications and may need to be kept in the nurse’s office. However, if your child has a 504 plan or a medical Individualized Education Plan (IEP), you can request that your child be able to carry his own enzymes as a modification. The 504 plan and medical IEP fall under federal law and supersede state laws.
My child doesn’t have enough time to eat lunch.
Request that your child be permitted to leave a couple minutes early from his last period before lunch so he can pick up his enzymes from the nurse’s office and still have enough time to eat. This request can also be made for children on a 504 plan or medical IEP.
What do I do if another student provides misinformation about CF to my child?
Use this as an opportunity to educate the class about CF. You as a parent can do the presentation yourself, or with your child. Perhaps your child would rather do it alone. But you may not want your child to be present because children can ask questions that may be harsh for your child to hear.
My CF child is older now and entering college. What should he be aware of?
Just like elementary and high school students, college students with CF are also entitled to certain rights. If they have a 504 plan and are attending a public college or university, then the 504 plan still applies. All students with CF should identify themselves with the Disabilities Office on campus. While your 504 plan entitles you to certain rights, the professor usually has the last word. This is when the Disabilities Office can be of great assistance. Children need not attend a college close to home. If they go to school in another city or state they should contact the local CF Center and schedule an appointment early in their freshman year so the care team can aid with any medical issues that may arise.
Individuals with CF must be more selective in finding employment than people without a chronic illness. This often requires more research on the employer and benefits prior to accepting a new job. In some cases, it may make sense to accept a job that pays less but has better health insurance. Also, persons with CF need to be in an environment that is not a health risk, for example, free of smoke or irritating fumes. If you have any questions about environmental risks, please ask your CF team. Full-time employment may not be right and a part-time position may better suit your health needs.
Typically, employers will not be very supportive of a new employee who is out frequently due to hospitalizations and/or other medical problems. If you are considering a change of employment, you will want to be as healthy as possible when starting the new position. Talk with your CF team to see if they have any recommendations.
Once you have established some longevity with your employer, you may want to consider talking with your supervisor about CF and how it affects your health. Today, more people than ever with CF are in the work force. An increasing number of companies are flexible about allowing employees to administer medications, including IV antibiotics, at work. Some supervisors will also allow employees to work from home when they are recovering from infections.
When starting a new job and selecting benefits, look into the possibility of short-term and long-term disability insurance. These benefits can be very helpful if you need to consider leaving work on permanent disability. Many times this benefit will see you through the months that it takes for Social Security to be approved and checks to begin arriving. Some people with CF have used their short-term disability as a test for themselves, to determine the need for permanent disability.
For anyone who is considering applying for Social Security Disability, there are several categories applicable to CF. The most common one relates to lung disease. The reviewers will review an applicant’s lung function over the past year, as well as other factors like hospitalizations and the need for IV antibiotics. The other potential areas to justify disability are digestive problems and bone disease. Your CF team should be able to help provide you with data that is helpful when filling out the disability application. The entire process may take several months or longer, so it’s imperative that you have a plan to support yourself through this lengthy procedure. The social worker from your CF team can help you explore the options for financial assistance in your community.