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. Your CF care center can help same way outlined for the IDEA. you document your or your child’s At the least, parents should be told needs in order to request school of a denial, have access to school accommodations. You can request records about the student and be changes like those found in an IEP allowed to work with the school or 504 plan; however, the request to solve the issue. Parents also can will not necessarily be granted as use mediation or request a due private schools legally do not have process hearing. Violations of to follow an IDEA or 504 plan. Section 504 can be reported to A private school that does not get the U.S. Office for Civil Rights. federal funding may decide not to A lawsuit can be filed; however, accept a student because of the this can be difficult and costly. need for accommodations. It is Private against the law for a school that gets federal funds to refuse to Schools accept someone because of request- If you or ed health accommodations. But, it your child could happen. You do not have to chooses to disclose health needs unless and attend a pri- until you need or request accom- vate school, modations. talk to school Do what you feel works best for administrators, your situation. You can tell the teachers and other students to school about your health concerns, learn how flexible the school is in or you can wait to tell them until meeting the needs of people with you need accommodations made. CF or with other health conditions. Your CF care team can help. Private schools that do not get fed- Getting Changes When Denied: If eral funding do not have to follow you and the school cannot agree the IDEA or Section 504. But, the about the needed changes, you can

4 file a complaint with has no such office, the United States there should be some- Department of Justice one in the school’s (www.usdoj.gov). administration who To learn more about helps students obtain education laws or accommodations scholarships, call the because of a disability. CF Foundation at Call the school to (800) FIGHT CF or learn about the help visit www.cff.org. available for students with disabilities. You College, Accommodations also can meet with University and that may be someone at the Vocational requested when school to talk about living at school your concerns. Training 1. Provide student certain You do not have to After finishing high type of dorm room, tell the school that school, some students like a private room, or you or your child has with CF may decide room with private CF. But, you will need to get a college and/or bathroom or air con- to tell them about CF university degree or ditioning, if needed if you request accom- learn a vocation. The because of health. 2. Change the student’s modations that you joy and pursuit of required number of or your child needs learning should be class hours per semes- because of CF. If ask- encouraged. People ter. However, this ing for accommoda- with CF should seek change could affect tions, get a written new options to learn the student’s health agreement with the and plan for their insurance coverage. school that lists the future. 3. Change class attendance rules, giving changes to be made. Colleges, universities, student other options You may request an vocational training like Internet, video, etc. accommodation from centers and other 4. Change student’s the school at any places of higher physical education time. If you or your requirements. education that get 5. Plan to change project child leaves home to federal funds are due dates or test dates attend school, contact covered by Section if student is absent the CF care center 504 and cannot refuse due to illness. nearest to the school to admit a qualified 6. Plan to give student at the beginning of student solely because notes from class or the school year so the student has a dis- class audiotape if they can help you ability like CF. Most absent due to illness. with any treatment 7. Give student a chance colleges and universi- to finish coursework for health problems ties have an Office after the course has during the year. Your for Students with ended, if much of the CF care team can help Disabilities that can semester was missed you determine the help students get due to illness. needed accommoda- accommodations that 8. Give on-campus tions and work with are needed. If a school housing or parking. the school. of higher education

5 Getting Changes When Denied: If you cannot get changes from Getting Accommodations a college, university or vocational in School school, you can file a complaint • Goal is education for with the school. Your CF care you or your child team can help with this process. • Request and work with the They can help with the forms school to get a written IEP and letters you may need from • CF care team can help a doctor during the complaint • If changes are denied: process. You also can report - Public school – violations of Section 504 to the contact your state education U.S. Office for Civil Rights. If the agency and request mediation school is still unwilling to meet - Private school – your or your child’s needs, you contact U.S. Department of can file a lawsuit in federal court Justice and file a complaint to try to get the needed changes; - College, university and however, this can be difficult vocational training – contact the school and file and expensive. a complaint or report a In summary, people with CF violation of Section 504 to the can enjoy learning at all ages. U.S. Office for Civil Rights The laws described in this pamphlet can help you or your child obtain accommodations in the school system to meet your or your child’s changing health care needs. Do not be shy about asking for these accommodations. They will help you enjoy learning—and life—more fully.

6 GLOSSARY

Accommodations: Changes that are Major life activity: Activities that a healthy needed for someone to participate in person usually does and that are major or an activity, like “no smoking” rules vital in life; these activities include, but Administrative law judge: Administrative are not limited to: breathing, walking, law judges, also called hearing officers seeing, hearing, speaking, eating and or adjudicators, make decisions for learning government agencies. They hold Mediation: The process of two parties hearings, decide eligibility for Social solving a problem, using a third person Security benefits, enforce health and as a guide who acts as a mediator safety rules and address discrimination Mediator: Someone unbiased who helps Alleging violations: When it is suggested two parties solve a problem that there is evidence that a person at Qualify for services: To be eligible for an institution, such as a school authority, services through a program has broken the law Rehabilitation Act of 1973, Section 504: Americans with Disabilities Act (ADA): A A federal law that prohibits discrimination federal law that prohibits discrimination against a person because of a disability in public settings against a qualified by any group that gets federal funds. person because of their disability This law applies to day care and to public Appeal a denial: A process to ask for a and private schools that get federal funds. review of a request for accommodations For the educational plan, which comes that has been refused under Section 504 (see Individual Disability: A physical or mental impair- Education Plan) ment or problem that substantially limits Section 504: See Rehabilitation Act of 1973, one or more major life activities. This Section 504 definition is for the ADA and Section 504. State Education Agency: The government “Disability” may be defined differently office that oversees education in a state under Social Security or other government assistance programs Substantially Limits: To decide if an impairment or illness affects or limits Disabled: When a person has a disability a person’s ability to do something, it (see Disability) depends on: the type or degree of Discrimination: Excluding a person from impairment; the actual or expected a program or making a decision about length of time the impairment lasts; and them based on race, color, religion, the known or expected permanent or sex, age, disability or country of origin long-term impact of the impairment Hearing officer: See Administrative law Undue hardship: Under the ADA, a public judge agency does not have to make changes Impairment: A decreased ability to do to a program or facility if doing so would something, such as a major life activity be an undue hardship, which is defined (see Major life activities) as very costly Individual Education Plan (IEP): A plan United States Department of Justice: A between a child’s family and a school department of the federal government to help meet the child’s learning needs; that examines complaints of discrimina- the plan tells how the school will manage tion under the ADA and other laws things like absences or medical treat- United States Office of Civil Rights: A part ments at school, such as taking enzymes of the Department of Education that Individuals with Disabilities Education Act ensures equal access to education (IDEA): A federal law that makes public Violations: When someone breaks the law elementary and high schools give free Vocational training: An education program and appropriate education to children that trains people for a job position, like with disabilities an electrician or mechanic

7 Resources Besides your CF care team, there are • National Association of School many other resources to help you Nurses: www.nasn.org/ sort through the issues to get the positions/positions.htm best education for you or your child. • National Information Center • The CF Foundation: for Children and Youth with (800) FIGHT CF or [email protected] Disabilities: www.nichcy.org • Your CF care center has the • Neighborhood Legal Services – Advocacy Manual: A Clinician’s appeal process resources: Guide to the Legal Rights of People www.nls.org with Cystic Fibrosis as a resource • Parent Advocacy Coalition for • Americans with Disabilities Act Educational Rights (PACER): (ADA): (800) 514-0301 or (952) 838-9000 (in Minnesota, www.usdoj.gov/disabilities.htm call (800) 537-2237) or visit www.pacer.org • CREON Family Scholarship Program from Solvay • U.S. Department of Education: Pharmaceuticals, Inc.: www.ed.gov/index.jsp (800) 354-0026 ext. 5898 or • U.S. Department of Justice [email protected] www.usdoj.gov • Cystic Fibrosis Scholarship • U.S. Office for Civil Rights: Foundation: (847) 328-0127 or www.ed.gov/offices/OCR/ [email protected]

• Colorado Department of Contributing Authors: Education: Fast Facts: The Role Beth Sufian, J.D. and Responsibility of a School Sufian & Passamano Nurse: www.cde.state.co.us/ Attorneys and Counselors at Law cdesped/nurse.htm Houston, TX • Federal Student Aid Information Suzanne R. Pattee, J.D. Center: (800) 4-FED-AID or Vice President of Public Policy www.fafsa.ed.gov and Patient Affairs Cystic Fibrosis Foundation • To learn more about federal Bethesda, MD government programs and laws, Leslie Hazle, M.S., R.N., C.P.N. visit www.firstgov.gov/ Director of Patient Resources • HEATH Resource Center for Cystic Fibrosis Foundation financial aid for school: (800) Bethesda, MD 544-3284 or www.heath.gwu.edu ©2004 Cystic Fibrosis Foundation

(800) FIGHT CF Educational support provided by Chiron www.cff.org Corporation, manufacturers of TOBI® [email protected] (Tobramycin Inhalation Solution, USP). 6931 Arlington Rd. Bethesda, MD 20814