Preparing for a Healthy School Year with CF

 

Amy Boggess is the Educational Liaison who serves the cystic fibrosis population at Riley Hospital for Children, Indiana University Health.  She is available in clinic for questions about education and CF

Communicating with Your Child’s School

I suggest that families meet with the school principal, guidance counselor, or special education coordinator prior to the start of the school year to discuss your child’s CF-related needs. 

Riley offers a special letter that families can give to schools to help with this conversation.  This letter explains what CF is and what types of things your child might do to stay healthy at school.

With your physician’s permission, this letter can also be customized to include special accommodations that you would like to request the school make for your child.  This can be everything from handing out enzymes to special bathroom or recess privileges.

To obtain a copy of this letter for your child’s school, email me at aboggess@iuhealth.org.

Documents to Support Your Child’s Needs

Some families find that a legally-binding document helps ensure that the school accommodates their child’s healthcare and academic needs.  There are two different kinds of these documents.

A 504 plan can be customized to your child’s specific situation and can cover everything from snack and bathroom accommodations to recess and hand hygiene requests.  Because a 504 plan is less formal, I recommend that most families begin with this plan first.

An Individualized Education Plan (IEP) is similar to a 504 plan, but it also includes academic  accommodations. To qualify for an IEP, your child must be academically struggling because of his or her CF.

Both of these plans are legally binding by the state of Indiana, meaning that any public school has to follow them.  Once a plan has been set up, families will meet with the guidance counselor, school nurse, and other school staff on a regular basis to address any questions or concerns.

Finding out What Works for You

What works well for one family may not work for another.  Some parents request that their child’s desk be sanitized before each use.  Others simply ask for a bottle of hand sanitizer to be available as needed.  Over time, you will find the approach that works best for you and your child!

Many kids with CF participate in after-school sports.  With lots of water or Gatorade and salty snacks at hand, sports are encouraged to help work out the lungs!

Many teenagers in our clinic have headed off to colleges within the state and across the country.  For special tips on preparing for a college move, contact me at aboggess@iuhealth.org.

Additional Tips

Looking for more tips for a healthy and happy school year with CF?  Cystic Fibrosis in the Classroom is a small booklet with helpful information for both families and schools.  Download it today at http://www.cfri.org/pdf/cfintheclassroom.pdf.

    Spring 2019 CF Clinic News

Care Team News:

  • Please welcome Erin Newbill, our new clinical care coordinator! Erin joins us from 8 West, where she worked as a pulmonary nurse for many years.

  • Bacteria culture results are now available on the My IU Health Portal. 

  • We are now sending pre-visit planning messages one week before clinic visits to all families who are on the My IU Health Portal.  Please reply to the message if you have questions or concerns that you want to have addressed at the clinic visit.

    Reminders:

  • The CF Center at Riley continues to be very active in CF clinical research.  Visit the Clinical Trials Finder on the Cystic Fibrosis Foundation website to see if your child is eligible for any new research studies. https://www.cff.org/Trials/finder

  • Our clinic phone number is 317-948-7208




This newsletter was created by the Cystic Fibrosis Parents Advisory Board in conjunction with Amy Boggess





 

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