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Surfing the Web
At ImproveCareNow we surf the web to find stories, research, and resources to share with you. Recently we were delighted to come across an online forum for IBD - with a thread about ImproveCareNow. Parents wanted to know more about us and how to get their kids enrolled in the program! Did you know by reading and sharing CIRCLE, you are helping to spread the awareness!
Jill's Story of Self
Jill Plevinsky is Chair of the Patient Advisory Council. In a recent LOOP blog post Jill gave a glimpse into what drives her to advocate for patients and families with IBD. Read more Compete w/ Crohn's
Carrie Johnson has not allowed Crohn's to get in her way athletically (Olympic kayaking) or academically (pursuing Veterinary Medicine). Carrie makes her own accommodations to ensure she can compete in sports and school. Read more |
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Ginger.io is collaborating with the C3N Project to help Crohn's & colitis patients track their health data.
The ultimate goal of the Passive PRO innovation is to help predict IBD flares before they happen!
Interested? Learn more
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Are you an empowered young IBD patient who feels inspired to make a change in the health care system? Are you looking to connect with a great group of peers? Join the Patient Advisory Council.
Contact Jill Plevinsky for more info & to sign up!
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As a parent you want your child grow to successfully manage their IBD on their own.
Visit www.ibdu.org, a useful website for older teens with IBD. The website includes info about IBD; tips on diet & lowering stress; and methods for dealing with IBD at college or work. It's also a great resource for the transition process. You can read other patients' stories and share your own. Useful link: Self-Management |
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Greetings!
Welcome back to our CIRCLE and to summer! The kids may be enjoying their time off, but here at ImproveCareNow we are already thinking ahead to the upcoming school year. Families managing Crohn's disease and ulcerative colitis should be too.
It is no small task to prepare and send kids with IBD off to school, but planning for accommodations that your child needs to succeed will help make their school experience easier and more productive, now and in the long run. Accommodations are things like extra help in classes, adequate time to complete assignments and make up tests, unrestricted restroom access, permission to keep a drink in class, flexibility to take their medications on time, etc.
In the Director's Notes section guest author Dr. James Berman writes about the value of pursuing a 504 Plan early. In the Living with IBD section two parents share their experiences with school accommodations for kids who did not have the option for 504 plans. As usual with IBD, there is no substitute for being prepared and proactive.
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Director's Notes
504 Plans - A New Language for Parents of Children with IBD Beyond the challenge of dealing with the symptoms of a child's diagnosis of IBD, parents must deal with a bewildering world of "Doctor Talk". Families must learn the alphabet soup of lab tests like CBC, CRP, MRI and TPN and drug names like Infliximab, Asacol and 6MP. Just as those are getting mastered they often must deal with an educational system that has its own "secret code," including terms like 504, IEP, FAPE, IDEA, multidisciplinary conference and testing accommodations. Background In 1973, Congress passed the "Rehabilitation Act" to extend civil rights to people with disabilities and allow them to more fully participate in society. The law requires that any organization or agency that receives federal funds must comply with its provisions. This, of course, includes public schools. One section of the law, "Section 504," requires schools to provide reasonable accommodations for children with disabilities. This means that the school must do whatever it can, within reason, to allow a student to participate in regular classroom activities with their fellow students. Certain medical conditions, including Crohn's disease and ulcerative colitis qualify under this law. It is important to note that 504 Plans are not identical to Special Education services even though they might include some of the same classroom modifications for the student. What kind of accommodations might a child with IBD need? An accommodation is a change that the school makes in its usual routine to help a student. There are four types of accommodation under 504 plans. The first type includes changes in how a student is tested. For example, allowing a bathroom break during a test or having the test room closer to bathrooms. The second involves changes to the environment like seating assignments, hall passes and lower stress classrooms. Next, students might need changes in the context of their teaching, including extra time for assignments, notes from the teacher, or catch-up tutoring. Lastly, a student with IBD might need changes in their schedule including a fixed time each day to go to the nurse's office for medication. How do I get the 504 process started? Exact rules vary by school district, but both teachers and parents may make a referral to the school. The magic words for parents to start the referral process are, "my child has a medical condition that is affecting their ability to get an education. I would like a meeting to discuss setting up a 504 plan for my child." The school is then required to set up an initial meeting and assemble a team to review possible accommodations with you and your child. When should I think about a 504 plan for my child? Anytime your child is likely to miss out on his/her education because of their IBD it is important to seek a 504 plan. It becomes especially important at the end of 8th grade to make sure that your child is going to be able to handle the high school environment of crowded hallways, limited bathroom breaks and frequent standardized testing. The organization that administers the ACT and SAT makes decisions about extended time on those tests, based on their own criteria along with a letter from the school. They are less likely to offer extended time, bathroom breaks or other necessary accommodations if the student has not had the same accommodations during high school. Likewise, colleges work on a different system of deciding about accommodations, but are more likely to be persuaded by what has happened during high school. The bottom line is that you should not wait until the last minute to seek special accommodations for your child.
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Living with IBD
Tania Moon and Cinda Lemont are parents of children with IBD. They are working professionals, active participants on the Quality Improvement Team at Nationwide Children's Hospital and members of the ImproveCareNow Parent Working Group. Here they share what they have learned about high school accommodations.
Tania: The 504 plan wasn't an option for my family since my kids are in private school. However, we were able to make various accommodations for Tyler during high school. First, I emailed all of his teachers (and copied the principal to keep him in the loop) and explained that he had Crohn's disease. I explained exactly what Crohn's was because so many people don't understand the disease. Then, I explained what it meant for the teachers as far as having Tyler in their class.
I was clear that Tyler needed to have unlimited restroom access. I worked with his school counselor so that this notation was made accessible in their computer systems - so that everyone could see it. I also provided the school a doctor's note explaining that he was under the care of a Pediatric Gastroenterologist for Crohn's disease. This way they had documentation, should they need it, to explain absences, etc. I also asked that he be allowed to have water or Gatorade in class. I made sure that the teachers knew how to contact myself or my husband should they have any additional questions or concerns. On days that Tyler was going to be out of school or if he was in the hospital, I would not only contact the school office but also send an email to the teachers so they knew. This really helped keep the dialogue open when it came to missing assignments, missing a test and making sure that Tyler had adequate time to make everything up.
It can be scary for a child (especially a teenager) who is not ready to talk openly about having IBD - to risk their privacy by telling teachers and school officials. Be very clear and up front about your expectation of privacy when you first start talking with teachers, guidance counselors, the school nurse and other officials.
Cinda: Tips for patients who don't qualify for a 504 plan include notifying every teacher and coach (remember to include extra-curricular and co-curricular activities), the guidance counselor and the school nurse up front every year. I offer to send each person a copy of the CCFA brochure for teachers. Get your child into the habit of notifying the school in advance of scheduled absences (i.e., Remicade infusions, doctors' appointments, etc.) and of requesting their work early.
The attendance office at our school allowed us to submit a letter from the doctor and then we didn't have to turn in medical excuse forms. Sometimes you can request that your child be granted a "permanent bathroom pass" so they do not need permission to leave the classroom. Some students have also gotten permission to use a staff restroom where there is more privacy. I have found the school staff was always receptive as long as we were proactive in getting our accommodations set up.
Would you like to know more about Tania and Cinda? Click here for an interview on their involvement with ImproveCareNow and Nationwide.
Are you interested in learning more about the Parent Working Group for ImproveCareNow? Send an email to social@improvecarenow.org to get connected with the group.
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