Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
To help ensure your child's needs are being met at school, you may consider requesting an Individualized Education Program (IEP) or a 504 plan.
As the parent of a child with cystic fibrosis, you play an important role in working with his or her school to help ensure your child's needs are being met. To do this, you may consider requesting an Individual Education Program (IEP) under the Individuals with Disabilities Education Act (IDEA) or a 504 plan under Section 504 of the Rehabilitation Act of 1973.
The IDEA is a federal law that requires public elementary and secondary schools make free and appropriate education available to children with disabilities. Section 504 is a federal law that prohibits discrimination against a person because of a disability by any group that gets federal funds. An IEP or 504 plan outlines how absences or medical treatments, like taking enzymes, will be managed by the school.
IEPs are generally used for students whose health conditions affect their ability to learn, while 504 plans are used for students who need accommodations in order to access their education. School personnel will generally recommend the type of plan that will most benefit your child. Some schools will recommend 504 plans since CF does not cognitively affect a student's ability to learn. However, many schools will recommend an IEP since missing school due to an exacerbation affects the student's ability to learn.
Families, a school health coordinator, a care provider, and a social worker talk about partnering with school staff to accommodate the specific needs of students with CF, including 504 plans.
Some schools will recommend an IEP or 504 plan even before a parent suggests one. However, some will not, so it is a good idea to check in with your child's school about their policies. If a school does not recommend an IEP or 504 plan, you can request one. It can take some time to put an IEP or 504 plan into place, so it is best to approach the school about an IEP plan early.
To get an IEP or 504 plan, or a review of your child in preparation for one, contact your child's school. It is best to do this prior to the start of each school year. Contact a teacher, administrator, or school nurse, and ask for an evaluation of your child under the IDEA or Section 504 of the Rehabilitation Act. Ask your CF care center for a sample letter that your doctor can send to the school, explaining how CF affects your child and identifying accommodations that may help. Your CF care team also may have ideas about how the school can help meet your child's learning and health care needs.
Under the IDEA, students qualify for services if their condition affects their ability to learn. Missing school is one way an illness can affect your child's ability to learn. This may qualify your child for services, like a tutor, when your child has an extended absence from school due to an illness. But, you need to have an IEP or 504 plan in place before your child is absent because of an illness. If you do not, it may take weeks to get help from the school.
Once a student qualifies for services, the school will hold a team meeting with the family to make an IEP or 504 plan.
Not all parents want to have a written IEP or 504 plan. Instead, you may have a verbal agreement with the school so your child can take medication at school. But, without a written plan, the school does not have to honor the agreement.
The IEP or 504 plan documents how the school will meet your child's needs. Before writing the plan, you, the school's IDEA coordinator, the teacher, and the people who know your child's needs should attend a team meeting. A member of your CF care team may also be able to join via conference call to provide additional medical expertise. Students ages 14 and older often are encouraged to attend. You can also ask a friend or colleague to accompany you to the meeting for support. Bring a copy of the letter from your CF doctor to the meeting, along with any other records that show why your child needs certain accommodations.
If the IEP or 504 plan does not meet your child's needs, do not sign it. You have the right to stop and reschedule the meeting if you need to learn more about your child's needs before a plan is completed. Ask your CF care center for a copy of a sample plan if you would like help in making an IEP or 504 plan.
The IEP or 504 plan should be reviewed at least once a year to see if changes are needed.
The school may not agree that your child is qualified for services under the IDEA. It may state that CF does not affect the child's ability to learn. If that is the case, you can ask that your child be evaluated under Section 504 of the Rehabilitation Act of 1973. Section 504 requires the student to have a disability that substantially limits a major life activity. Many people with CF qualify for services because their ability to breathe or digest food is limited. So, Section 504 should give your child the changes needed to benefit from school.
Schools are also mandated to provide students who have IEPs with transition IEPs. Transition IEPs help students begin to think about career goals, independent living, and post-secondary education. Schools may not integrate the child's health conditions into the planning process.
In some states, transition IEPs go into effect when the child is 14; in other states, they go into effect when the child is 16. You can help by letting the school's IEP or 504 team know about restrictions on careers that affect breathing, and the need to balance career goals with attention to CF care. You may also want to consider ways in which the school's transition process and your CF team's healthcare transition process can work together to prepare your child for adulthood.
Watch families, a teacher, and other school health specialists talk about the transition from elementary to middle and high school, fitting in day-time treatments, and managing school work while in the hospital.
If working with a school to accommodate your child becomes challenging, keep in mind that you may need to work with the school for many years to get the education that your child is allowed by law. The IDEA provides help for parents who cannot get needed accommodations or services for their child. Your CF care team can help with the appeal.
If the school will not make needed changes, you have some options:
Section 504 allows each school to create its own way to appeal a denial for accommodations or services. But, some schools may use the same way outlined for the IDEA. At the least, parents should be told of a denial, have access to school records about the student and be allowed to work with the school to solve the issue. If you and the school cannot agree about the needed changes, you can file a complaint with the United States Department of Justice.
If your child attends a private school, talk to the school administrators, teachers, and other students to learn how flexible the school is in meeting the needs of people with CF or with other health conditions. Private schools that do not get federal funding do not have to follow the IDEA or Section 504. But, the Americans with Disabilities Act (ADA) may help students with CF get changes or accommodations at a private school.
The ADA protects a person who has a physical or mental impairment that substantially limits one or more major life activities, who has a record of impairment, or who is regarded as having an impairment. It applies to schools, day-care centers, public buildings, and other places that are open to the public.
Most students with CF meet the ADA's definition of a person with a disability because they are substantially limited in major life activities, such as breathing and digesting food. Your CF care team can help you document your child's needs in order to request school accommodations. You can request changes like those found in an IEP or 504 plan; however, the request will not necessarily be granted as private schools legally do not have to follow an IDEA or 504 plan.
A private school that does not get federal funding may decide not to accept a student because of the need for accommodations. If the school does receive federal funding, they cannot legally refuse to accept someone because of requested health accommodations. But, it could happen.
You do not have to disclose health needs unless or until you need to request accommodations. Do what you feel works best for your situation. You can tell the school about your health concerns, or you can wait to tell them when you need accommodations made. If you are uncertain or have questions, your CF care team can help.
If you have questions or would like more information about IEPs, 504 Plans, and school accommodations, contact CF Foundation Compass for a referral. Call us at 844-COMPASS (844-266-7277) Monday - Friday, 9 a.m. - 7 p.m. ET, or email us at email@example.com.
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