The Importance of Planning


Patients, caregivers, and parents of school-aged children with IBD should think of all the things that can and will happen before they do in order to avail themselves of the maximum protection afforded by law. Of course, not everything an IBD patient deals with can be planned for, but certain things can. When planning is possible, you should make every effort to ensure that you won’t be blindsided.

Health Insurance for Your Child with IBD?

All health insurance plans that allow coverage of dependents terminate coverage when the dependent reaches a certain age.  Under the Patient Protection and Affordable Care Act, children can be added or remain on a parent's health insurance policy until the age of 26.   Coverage can continue even if your child is not attending school, married, not living with you or not financially dependent on you.  To learn more visit: www.healthcare.gov.

Planning For Work Absences

Another area where planning is critical is in the context ofwork. Whether you are a working patient or a working caregiver of an IBD patient, you can count on some absences during the year. Absences can run from a surgery and recuperation period to a one or two day absence every eight weeks for medication infusions. Regardless of the length or frequency of absences, under the Americans with Disabilities Act, you can be fired for absenteeism, even if you are absent due to a chronic illness. How can you avoid being fired? The answer is to take leave under the Family & Medical Leave Act (FMLA).

The FMLA provides up to 12 weeks of unpaid leave time in a 12-month period for employers with 50 or more employees. Some states have less restrictive laws, providing FMLA leave for smaller employers and/or for longer periods of time. The catch, though, is that you have to request FMLA leave in advance; you can’t wait until it looks like you are about to get fired because you have missed a lot of work. Once you have FMLA leave, you cannot be fired for using it. This is the only protection against job termination due to absenteeism of which I am aware.

Every person who might need FMLA leave should apply for it at the beginning of every year. Some employers will ask you to fill out a form; for others, you just submit a written request in the form of a brief note. You also must provide a medical certification, but you do not have to provide detailed medical records. Your employer has the right to select which of several ways the company will count the 12-month period—it can be the calendar year, the fiscal year, or a rolling 12-month period established by the employer. You should be very aware of how your employer counts the relevant 12 months.

In addition, your employer may make you use your paid sick and vacation leave during an FMLA leave. In general, FMLA leave is unpaid. However, your employer is not required to give you 12 weeks of FMLA leave and an additional two weeks’ vacation time. Your employer can require that you apply your paid vacation and sick time to your FMLA leave.

You do not have to wait for a crisis before asking (in writing) for FMLA leave. You can do so at the beginning of the year on the basis that you have a chronic illness and, thus, some absences can be anticipated each year. You may or may not use up your 12 weeks of leave every year. You lose nothing by not using up all of your time.

FMLA leave ensures that you cannot be fired as long as you do not use up more than 12 weeks of leave time. If you plan in advance, you can protect your job; if you don’t, you can be fired for absenteeism. Planning is the key.

Section 504 Plans for School- Aged Students with IBD

Finally, all too often, I get calls from parents whose child has made it to final exams, but the child has a flare during exams and the school refuses accommodation because it was not sought earlier in the year. Designing a section 504 plan at the beginning of every school year can protect against this sort of last- minute crisis.

Section 504 of the federal Rehabilitation Act addresses disparities in education faced by children with physical disabilities. The standard for determining if a child is disabled is the same as the test under the Americans with Disabilities Act. Although the courts are by no means unanimous, most children with IBD will be found to be substantially impaired in the major life activity of disposing of bodily waste, which would render them disabled in the eyes of the law.

Although most children with IBD will not need special education services, they may need accommodation due to their disability. For example, they might need “stop the clock testing,” which means that the clock stops when the student goes to the bath- room, and starts again when the student returns to continue work on the exam. These sorts of accommodations are negotiated and put in writing in the form of a section 504 plan.  Download a sample “template” section 504 plan letter for children with IBD. Please note that the template is intended to cover the universe of issues that might face children with IBD. No one student should need the entire template as his or her actual section 504 Plan.

Once Again

Whether you’re concerned about a gap in insurance coverage for your child or yourself, an extended leave from work, or that your child gets the best education possible, the best advice remains the same: plan ahead. Resolving many of these issues will take persistence and patience, no matter how early you start, but the more time you allow for the process, the greater your chance of reaching an acceptable resolution. More information on all of these topics is available in Know Your Rights: A Handbook for Patients with Chronic Illness at: www.ezpromostore.com/ccfaretail/bookstore/

This information was adapted from the article The Importance of Planning, by Jennifer C. Jaff, Esq.  



For further information, call the Irwin M. and Suzanne R. Rosenthal IBD Resource Center (IBD Help Center): 888.MY.GUT.PAIN (888.694.8872).

The Crohn’s & Colitis Foundation of America provides information for educational purposes only. We encourage you to review this educational material with your health care professional. The Foundation does not provide medical or other health care opinions or services. The inclusion of another organization’s resources or referral to another organization does not represent an endorsement of a particular individual, group, company or product.

About this resource

By: CCFA
Published: May 1, 2012

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