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Day to Day School and CF

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Day to Day School and CF Day-to-Day School and CF earning opens pamphlet only applies Ldoors to new to the accommodations worlds and helps students may need prepare young peo- because of CF. In ple for a bright general, par- future. Many ents of a child people with cystic with CF and fibrosis (CF) have adults with CF become doctors, should try to lawyers, teachers, work with homemakers and their school engineers, or have to have their pursued careers CF needs met. in other fields. Your CF care Learning is a vital team can help part of life at all you learn more ages. Schools help about the rights of people to live, learn students with CF and enjoy each day, and how to work whether to prepare for a with your school. career or just to enjoy the process. When people with CF attend Day Care school, they may need special It may be hard permissions, services or changes for you to from the school to maintain their find day care health. For instance, some people for your child with CF may need to take medi- with CF, as cines at school without going to some day-care the nurse’s office. Others may providers may need to have a single room in a not feel confident in their ability college dorm or be permitted to to care for your child. The park their car close to an entrance. Americans with Disabilities Act (ADA) may help if you are having a hard This pamphlet tells you about the time finding day care for your laws that allow students to have child or if you are experiencing their medical needs met when they discrimination. Under the ADA, a attend day care, elementary and day-care provider cannot refuse to high school, college and university care for a child simply because the or get vocational training. This *Words that appear in bold italic are defined at the end of this pamphlet. child has a disability, public elementary and unless it is an undue secondary schools hardship to bring the give free and appro- child into the day- priate education to care setting. This is children with disabili- determined on a ties. Section 504 is a case-by-case basis. federal law that pro- To find out more hibits discrimination about the ADA, see against a person the “Private Schools” because of a disability section of this pam- Sample IEP by any group that phlet. You also can accommodations gets federal funds. An contact the ADA at 1. Give time during IEP or 504 plan out- (800) 514-0301 or school day to take lines how absences or visit their Web site medicines or do air- medical treatments, way clearance therapy. at www.usdoj.gov/ 2. Adjust school rules to like taking enzymes, disabilities.htm. If allow child to take will be managed by the day-care center own medicines, like the school. An IEP gets federal funding, pancreatic enzymes. or 504 plan can be you may have options 3. Have plan to get requested for many under Section 504 of homework or tutor reasons. the Rehabilitation Act when child is ill or To get an IEP or 504 of 1973, discussed in in the hospital. 4. Give audio or video- plan, or a review of the next section. tapes of missed classes. your child in prepara- 5. Adjust or waive Public Schools tion for one, contact attendance rules. your child’s school. It 6. Give access to private Elementary School is best to do this at and High School bathroom, perhaps in a nurse’s office. the start of each Many children with 7. Don’t limit access to school year. Contact CF find that attending bathroom or water. the teacher, adminis- school with their 8. Have a school medical trator or school nurse, emergency plan. friends prepares them and ask for an evalua- for the future. If your tion of your child child goes to school, under the IDEA or it is vital to work with Are you disabled? Section 504 of the the school to help Many people with CF Rehabilitation Act. meet your child’s work hard to stay healthy Your CF care center daily health needs. and active. They may not has a sample letter wish to think of them- To do this, you may that your CF doctor selves as “disabled” to need an Individual can use to write to the qualify for changes at school to explain how Education Plan (IEP) school. Most laws are CF affects your child under the Individuals based on someone’s with Disabilities health status or being and to identify some Education Act (IDEA) identified as having a “dis- school accommoda- or a 504 plan under ability.” See what options tions that may help. Section 504 of the you have, and consider Your CF care team identifying yourself as dis- Rehabilitation Act of also may have ideas abled to be eligible for about how the school 1973. The IDEA is a changes you may need. federal law that makes can help you meet 2 your child’s learning and health from your CF doctor and any other care needs. records that show why your child needs certain accommodations. If Not all parents want to have a the IEP or 504 plan does not meet written IEP or 504 plan. Instead, your child’s needs, do not sign it. you may have a verbal agreement You have the right to stop and with the school so your child reschedule the meeting if you need can take medicines at school. to learn more about your child’s But, without a written plan, the needs before a plan is done. Your school does not have to honor CF care center has a copy of a the agreement. sample plan if you would like Under the IDEA, students qualify help in making an IEP or 504 plan. for services if their disability affects The IEP or 504 plan should be their ability to learn. Missing reviewed at least once a year to school is one way an illness can see if changes are needed. affect your child’s ability to learn. The school may not agree that This may qualify your child for your child is qualified for services services, like a tutor, when your under the IDEA. It may state that child is absent from school due to CF does not affect the child’s an illness. But, ability to learn. Then, you can ask you need to that your child be evaluated under have an IEP Section 504 of the Rehabilitation or 504 plan in Act of 1973. Section 504 requires place before your the student to have a disability child is absent that substantially limits a major because of an life activity. Many people with CF illness. If you do qualify for services because their not, it may take ability to breathe or digest food weeks to get help is limited. So, Section 504 should from the school. If a plan is in give your child the changes place before your child gets sick, needed to benefit from school. the school can start the plan and get a tutor in a few days when Getting Changes When Denied: you tell the school that your child Working with a school to get is absent due to illness and will accommodations for your child need help. can be challenging. Keep in mind that you will be dealing with the Once a student qualifies for servic- school for many years, and your es, the school will hold a team final goal is to get the education meeting with the family to make that your child is allowed by law. an IEP or 504 plan. The plan says what the school will need to do The IDEA provides help for parents to meet your child’s needs. You, who cannot get needed accommo- the school’s IDEA coordinator, dations or services for their child. the teacher and people who know Your CF care team can help with your child’s needs should attend the appeal. If the school will not the team meeting. Students age 14 make needed changes, you may and older often are encouraged to file a complaint with your State attend. Bring a copy of the letter Education Agency. You may need to 3 request mediation with the school ADA may help students with CF and a mediator from your State get changes or accommodations at Education Agency to solve the a private school. The ADA protects issue. If this does not work or is a person: who has a physical or not offered in your state, ask the mental impairment that substantial- school to have your complaint ly limits one or more major life heard by a hearing officer or activities; who has a record of administrative law judge or have impairment; or who is regarded as the United States Office for Civil having an impairment. It applies Rights look into the issue. If this to schools, day-care centers, public does not work, you can file a law- buildings and other places that are suit in federal court alleging viola- open to the public. tions of the IDEA; however, this Most students with CF meet the can be complicated and expensive. ADA’s definition of a person with a Section 504 allows each school to disability because they are substan- create its own way to appeal a denial tially limited in major life activities for accommodations or services. such as breathing and digesting But, some schools may use the food.
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